Dr. Mom's Spot

Neighbor Problems

2011-03-07T17:34:00.004-05:00

Despite my telling my downstairs neighbors when they were moving in that my son is autistic and apologizing ahead of time for his not sleeping and his head banging, they are not understanding. I feel bad that my son is noisy, but if there were something I could do, I would have done it.

Our son's behavioral therapist suggested that we put a radio in his room to help him to sleep. Unfortunately, last night he was playing with it in the middle of the night and turned it up loud. As soon as we heard it, we turned it off. I've since removed the radio, which he's very upset about. It's not like we were having a party or it was on for a long time. It's also a little radio, not a big sound system or something, so it wasn't THAT loud.

Ugh. I just hope they don't make our lives miserable by trying to get us evicted or filing a lawsuit or calling the police or something. I wrote a letter of explanation even though it's none of their business, just to be nice. I'm trying to take the high road. I scanned a copy of the letter he wrote and the reply I wrote so I can show it to someone if I need to. I may bring it down to the office just to be proactive in case they file a complaint. One of the people who works in the office used to live in their apartment, so they know exactly what it's like to live there, and they were very kind and understanding of our situation. Not these folks.

Well, I guess we'll just pray for them.

Four Months?

2011-02-25T09:13:00.003-05:00

Julia Child's Boeuf Bourguignon

My son's Valentine's Day Card

Daddy's Birthday Card from the kids

My naughty daughter caught in the act

Oh gee. My son hasn't been sleeping, so I haven't been sleeping. Sleep deprivation is horrible. I have no short term memory. The worst thing is that if I at least kept up this blog, I could look back and see what we've been doing.

Our babysitter moved away, so I haven't had help. My husband is always working, and I'm just dog tired. Worn out. Burnt out. Next month at some point my husband will be starting a new job, and he'll be home more often. I'm hoping that we'll both be able to make it to the gym and feel a little better and have some time to ourselves. We'll also have our weekends back and be able to go hiking and have some family time. I'm also hoping to find another babysitter. It would be nice to have some help again and maybe see my husband alone once in awhile.

We're looking into a special bed for my son called a Noah's Bed, but it's $5,000, and takes forever to get through insurance. We're also looking at a bed tent, but I'm not sure it's going to be strong enough for a nearly six year old boy. We got a disco ball to try to appease him so he could watch something spin that wasn't the microwave dish, but it burns out so fast we've gone through four bulbs in a week and a half. He still drums and bangs all night long, and my daughter doesn't always take a nap. When she does, it's short, so I don't really get to catch up on any sleep and I don't keep up with any cleaning. My cousin offered to come over and hang out with the kids so I can clean, but it's so messy I feel like I have to clean before she comes over to help me clean, so I haven't had her over yet.

My son actually fell asleep at a decent hour for once last night, but my daughter wouldn't sleep. Figures.

I'm trying to stay happy and cheerful and patient. Not easy. Not doing all too well at it either. Guess this is why I don't like to update. I feel like I don't have a lot of happy things to write about so I don't want to write.

My son is sweet and affectionate and my daughter is adorable. She's a non-stop talker. She loves storms. She says, "Storm comin' Mom. It's a big one. It comin' for YOUUUUUU." She's a silly goose. "I NEEEEEED snuggles Mom". And "NO".

We were going to go out for Valentine's Day. The folks at church were going to watch the kids. But they got sick, so I cooked. I made Julia Child's Boeuf Bourguignon. It was absolutely delicious.

We had a nice party for my husband the other day for his birthday with just the four of us. The kids had fun making his card and decorating. We just had a pizza party. It was fun. We had ice cream cake. My daughter wanted more cake, but I told her to finish what she had on her plate first. So she got up, took her fork, and went over to the cake and took some more saying, "I got more cake". Naughty girl.

Too Cute

2010-10-14T08:07:00.004-04:00

I just love my kids. The day before yesterday, my daughter sat in a chair facing my husband, my son, and myself and had a detailed, animated conversation. The only words I understood were yes and no, but she certainly had a lot to say. We were hysterical. She loved the audience. We treasure every single utterance and every single no after having to wait five years to hear our son speak.

Then she decided it was kissy time. So, she came over, climbed up on the couch and said, "Daddy's turn!" and kissed my husband..."Mommy's turn!" and kissed me...and then did the same thing with my son...over and over. We were all laughing, and my son was giving wonderful kisses back to his sister. It was great.

Yesterday my little girl turned 2. She woke up very early, and we sang Happy Birthday to her. She came downstairs to put big brother on the bus, and then we snuggled and she fell back to sleep. I got a lot of housework done, and then when she woke up, we went to Weight Watchers, she played on the ice cream truck toy in the mall, and then we went out to lunch with a good friend of mine at my daughter's favorite restaurant...Chez McDonald's. By the time we got home, it was time to get big brother off the bus and they played outside for awhile until my son threw a large stick at my face. Then I brought them upstairs and my son had a horrible tantrum that went on and on resulting in more wall dents and several bumps on his head. Horrible. The only way I could stop him was by physically holding him on the couch so he couldn't hurt himself anymore. Not nice. He eventually calmed down, thank goodness, because my daughter needed attention too and I have to ignore her when we're in crisis mode. Not good. Then they played nicely and I made dinner for them. Then the babysitter came over and my husband and I went out for our marriage workshop at our church. I felt a little bad going out on my daughter's birthday, but there are only 8 classes, and it's important that we keep our marriage strong. So, we're going to have cake tonight with the behavioral therapist. :) Then we're having a family party on Sunday. I'm going to be making brunch food. I can make almost everything ahead, so it'll be easy to cook and I won't have to worry about missing church. We love going to church.

So, that's what we're up to. :)

Behavioral Therapy

2010-10-12T07:50:00.003-04:00

We started behavioral therapy a couple of months ago. I wish we had been able to get behavioral therapy a lot sooner. I know that some behavioral therapy is done at school, but I sure could have used the help at home.

Disciplining a child with autism is extremely difficult for several reasons. First, it can be difficult to tell the difference between bad behavior and autism...what can't they help doing, and what can they help doing? Second, many autistic kids just don't understand many discipline methods. This is very frustrating.

We have always tried to expect good behavior from our son, and have always been consistent. I always give a tremendous amount of positive reinforcement, follow through on threats for punishments, and I always try to make sure that the punishment fits the crime. However, this doesn't always help because many times my son just doesn't seem to "get it".

Also, he can be aggressive toward himself and me. He bangs his head when he is angry, frustrated, or afraid. Trying to get him to do something else is extremely difficult. This is the second thing the therapist is trying to address.

Other things we're working on are sitting at the dinner table, potty training, and transitions.
The therapist uses something called ABA therapy. That stands for Applied Behavioral Analysis. We've actually been using many aspects of ABA without evening knowing it.

Basically, ABA breaks down tasks into minutia and the child receives a tremendous amount of positive reinforcement in order to get them to display desired behaviors. The hard part is knowing what tiny steps to break the activity into, and focusing only on positive reinforcement because these kids DON'T get traditional discipline. The negative reinforcement is withholding the positive reinforcement. This is extremely challenging and takes an immense amount of patience and energy. It's absolutely exhausting. By the end of the day I'm often feeling very burnt out, and this takes a lot of attention away from my daughter.

Steps we're taking are using picture schedules as well as using lots of pictures for communication, giving stickers for taking medications, and giving positive reinforcement like saying good job or giving a high five every few seconds that my son is seated at the dinner table (and getting up dozens of times to put him back into his seat during dinner...right now we hate dinner time). Potty training involves getting to watch Chitty Chitty Bang Bang for 20 minutes if he spends as much as one second sitting on the potty, and we've limited the choices of what to do instead of bang his head down to just one thing that he can do...stomp his feet.

ABA combined with his new medication has been somewhat effective, but anything in autism takes a lot of time...often years. Some things never happen. However, we have to have high expectations in order for my son to achieve his highest potential. So, that's what we're doing.

Lastly, my nephews gave my son a drum set from the video game Rock Band. It's quiet, and my son loves it. We've tried all sorts of other drums or other things to get him to bang on because he needs to bang constantly. He ruined so much furniture and broke lamps and hit others constantly, and it drove us crazy. Now he has an appropriate outlet for his drumming, and everyone is happy.

Patience, time, consistency, repetition, reinforcement. ..difficult but worth it.

Where Has the Time Gone?

2010-10-04T08:52:00.007-04:00

Playing horseshoes at the family picnic

Playing volleyball with the cousins at the family picnic

Rides at the community day fair

Nature hike at the harvest festival

Cool mushroom we found on our nature hike

Oh my! It's been a month since my last post. It's been a busy month with kindergarten starting for my son and all of us passing around a cold. It's my turn right now. Yuck. At least my son didn't get horrifically ill this time. Usually when he gets a cold, he winds up with asthma and on antibiotics for MONTHS. He still has a runny nose and coughs once in awhile, but that's it. At least we dodged one bullet. :)

Since my last post, we went to my girl friend's wedding, which was wonderful. They provided daycare at the reception, and so my husband and I were able to relax, eat, spend time together, and talk to all our friends at our table. It was wonderful. After the wedding, they had a bonfire and fireworks. My daughter said the fireworks were "cool". She's too much.

Then kindergarten started. I'm not fond of the bus driver. She's unfriendly and drives too fast. Other than that, my son is doing extremely well. He's talking more, he has told me twice about things he's done in school, and his teacher says he's doing very well in the class. We're still working on toilet training. We went through a lot of confusion with where to send my son's medical forms, immunization forms, and therapy prescriptions because he's going to a school outside of our district, so the district and the school both needed the forms...we eventually worked everything out.

We started behavioral therapy with my son. The therapist has given us a lot of great tools that have been very helpful. I'll have to write a separate post just about that.

Our babysitter is back from being home in NJ over the summer. We had another babysitter who was very good, but we just connected with her more. As a matter of fact, she stopped over yesterday with her boyfriend to drop off little pumpkins and apples for us and the kids. She's just a really nice girl, and we love her.

She still comes occasionally during the day to hang out with the kids so I can catch up on some cleaning, and she's coming over Wednesday nights so that my husband and I can attend a marriage workshop at our church. Although we're doing well, we want to keep it that way. :) Especially with how difficult it is to be parents of an autistic child and how easy it is to get so wrapped up in parenting and get so tired that you forget your relationship with one another.

We also love our church. That was a huge decision, and I suppose that's another post too. We had gone on a Tres Dias weekend, and since then, we've really had God as the center of our lives more than ever before, and it's made such a difference. That's another post too.

My son just started a new medication. It's similar to the one he's been on, but this one is extended release so it's not supposed to make him as tired. So far, it's only been two days, but he doesn't seem too tired and he seems a little more focused. Time will tell.

My husband's parents were up for a visit, and we got to see them a couple of times. We had the annual family picnic, which was a lot of fun, and then we spent another day over my sister in law's house just hanging out and eating way too much. My WONDERFUL nephews gave my son one of their drum sets from Rock Band, which my son has been using every single day...it's so nice to have something for him to drum on that's not the table, the lamps, my head...

I also got to go out to lunch again with my cousin, Carole to the CIA. That's another post too. We're going out again this week for lunch with my Mom and her Dad.

Sheesh, I have a lot of catching up to do.

I really should update the blog a lot more often. It's so nice to go back and read about things. It's like a journal. There are even services where they'll print out your blog as a book.

Well, I'll post more later, but at least that's a little bit of what we've been up to. :)

Dutchess County Fair

2010-09-02T13:08:00.004-04:00

Well, it is sad, but this is my first entry about someplace we actually went this summer. It's been a quiet summer focused on school, therapy, taking care of my son, and church.

I was really hoping that the fair this year would be more fun than last, and it was. My son is still fixated on very few things. He spent almost the entire day playing in a little bin of dried soybeans and small toys. We had to wrestle him out to see the old-time machines which he likes because they spin. We had to force him to sit through a high diving act, and he wasn't even very interested in the construction vehicles they had out for the kids to climb on. My daughter was interested in more things, so my husband and I split up. My daughter and I went to the little zoo, the little museum, and to see the animals and the butterflies. Mostly we stayed by that bin. I truly hope my son's interests will expand a bit and the tantrums let up so that we can have more fun.

I think I'm ready for summer to be over. I usually like summer, but this year has been a bust. It's been the hottest summer ever, my son's been sick the entire time so we couldn't go in the pool or much of anywhere else, my husband works long hours most days of the week so I don't see him very often, and there's just no time or money to go anywhere.

Still, we're grateful for what we have. We have our health (for the most part), a comfortable home, two cars, plenty to eat, clothes to wear, and good friends and family. What more do we need, really?

General Updates

2010-08-31T21:32:00.003-04:00

We started working with a behavioral therapist who has provided us with picture schedules that we've been using, and this has been very helpful with transitions. My son likes to know what's going on during the day. My daughter likes them too. We have a strip on the wall by his bed where I put the pictures, and I also have flip cards so that I can bring the pictures along wherever we go so that I can prepare him for transitions while we're out too.

The therapist has also been working on getting my son to sit through a meal, and he's doing very well. He still gets up, but the length of time that he's sitting is getting longer and longer.

We're also working on getting my son to keep his seatbelt on, and he's been doing well with this too.

The head banging continues, despite all efforts to curtail it. Sigh.

Our new neighbors moved in, and they seem nice. They're also a family of four with a son and daughter who are 14 and 11...same age difference as mine. The mother is an aid in the local school system, and she works with an autistic boy. My husband's coworker calls this a "God-incidence". I like that term.

Kindergarten starts on September 8th. I like the program my son is in, and we've been to visit the outside of the school. There's a big playset that looks like a fire engine on the playground, and this was a big hit with my son. The school is a regular public school in a nearby school district, but my son will be in a self-contained class with other autistic children. There will be seven students, a teacher, two assistant teachers, and a speech therapist in the room. The program is very similar to the preschool program he just finished, and I think he will do well.

He still has diarrhea, and the doctors still can't seem to figure out why.

My daughter is talking up a storm, and her pronunciation is getting clearer. She's just too darned cute.

I'm sure I'll have more time to write when my son goes back to school. He takes up a lot of time...but it's a blessing that I have so much time to spend with my kids.

When My Son Doesn't Get His Way...

2010-08-13T23:08:00.004-04:00

When my son doesn't get his way, he bangs his head. Unlike normal kids, autistic kids will bang their heads until they hurt themselves. Despite this, he still doesn't get his way. I'm hoping that he'll eventually learn that banging his head does not serve any purpose. Unfortunately, we're on hole number two in the wall from the head banging.

We have been very blessed to have very understanding downstairs neighbors, and very kind maintenance workers who are willing to come and fix the holes and who understand that autistic children do these things and are not surprised or judgemental.

Thank you God.

Kindergarten Placement Update

2010-08-13T22:57:00.003-04:00

Well, after much prayer and being a pain in the neck, we finally have my son placed in a kindergarten class for September that I'm happy with!
The coordinator of special education is filing a variance to open up a 7th spot JUST FOR MY SON in one of the classes for autistic children in a district school So, the ratio will be seven students, one teacher, two teacher's aides, and a speech therapist. That's a smaller ratio than he has now, as he's in a similar situation but with 8 children. I visited the class, and the children are similar to my son in level of functioning. The class is similar to the class he is in now, but with academics that closely follow the regular academics of the school. The class is in a local grammar school, so there will be plenty of interaction with "typically developing" (that's the PC term) children. There will also be lots of opportunities for mainstreaming. AND he will be eligible for any after school activities offered including instrument lessons, chorus, sports, or whatever he may be interested in. He will also have the opportunity to be mainstreamed into academic classes as well, should he excel in a particular area. So, I'm very happy. Also, the school is only 20 minutes away, which I'm more comfortable with. It's in a nice, quiet little area, and the playground has a big monster truck for the kids to climb on. My son is very excited about this.
Today was his last day of school, and I was happy to be able to let his teacher know where he'll be going.
We still have to work on potty training, which has been difficult because he's had diarrhea for six weeks now, and none of the doctors or specialists seem to be able to figure out why. This is bad for toilet training because he doesn't make a lot of urine because most of his fluids come out in the bowel movements. This means there aren't a lot of opportunities for him to succeed in making pee pee on the potty, and this means he doesn't have success to motivate him. This is not a good thing, but I explained the situation to the special ed coordinator, and this is not going to break the deal for my son being in a district class. So, we'll just keep trying. He has a medical condition, and he can't help it, so I'm glad they wont' hold it against him. If they did, I would have insisted they get an aide for him. I guess I've been enough of a pain in the neck for them. :)

Kindergarten Placement

2010-08-05T20:08:00.003-04:00

Well, we're in the midst of looking for the best placement for my son in kindergarten. He was initially placed in a program within an institution that treats the most severe cases, with many violent children with a ratio of 6:3. I didn't feel it was appropriate for him.
Then we looked into a district school with a class specifically for autistic children also with a ratio of 6:3, but there were no spaces.
I told the district that they'd have to find some other options for my son, and if they don't have any openings, then I want him to be placed into a higher ratio class with an aide.
Then we looked into another institution that is for multiply handicapped children with a ratio of 12:5. He fit in a bit better here, I wouldn't have to worry about him being injured, but the school is 45 minutes away. Also, the children are much more severely handicapped than my son. So, I'm not completely thrilled with this placement.
Then today, I got a phone call saying that they were willing to create an opening for my son in a district school in one of the classes for autistic children. I THINK that this would be ideal, as he would be in a regular school, close to home, with more opportunities to integrate with normal, ah, er, typically developing children. It would then be easier to move on to mainstreaming and inclusion.
So, we'll see.

A Book to Share at School

2010-07-23T08:06:00.006-04:00

I made a book for my son to bring to school that told of his experience. He had me read it about a hundred times this morning while we were waiting for the bus, and by then he had it memorized and he was reciting it while looking at the pictures while he sat on the bus. He is talking MUCH, MUCH more, but he is still hard to understand, and his vocabulary is still limited. So, sending in a book is a good way for him to share what happened to him, and he likes seeing his experience in a book too.

DS Met Too Many Yellow Jackets

DS was playing by a pine tree.

All of a sudden, DS felt a poke. It was a yellow jacket.

Yellow jackets are not like bees. They make nests in the ground and get very angry if someone comes near. A bee can only sting once, but a yellow jacket is a wasp that can sting many times. That is what happened to DS.

Soon, many more yellow jackets were stinging DS. Daddy came and brushed them all off. He got angry right back at those wasps.

DS got a lot of boo boos. They hurt a lot. Mommy called 9-1-1. Three trucks came just for DS-an ambulance, a police monster truck, and a fire truck.

DS got a shot. He didn't like it, but it made him feel much better. Mommy snuggled with DS, he slept a lot, and by the next day, his boo boos didn't hurt anymore.

An exterminator came and got rid of that wasp nest. Now DS can play by the pine tree again.

The End.

My Son's Ordeal...

2010-07-20T22:52:00.003-04:00

My son was finally able to go back to school today because he got clearance from the doctor that he doesn't have anything contagious. So, the next step, since he still has diarrhea, is to go to the GI doctor. That's a tummy doctor. After he got home from school today, he took a nap, and then we went to get his new glasses. He looks so handsome in them! My husband got home just a few minutes after we did, so he stayed outside with the kids so they could play, and I went upstairs to cook dinner. While slicing onions and boiling pasta, I heard a horrible screaming coming from the stairwell, so I ran over to see what had happened. My son was covered in wasp stings.
My son had been playing near a pine tree, and apparently, there was a yellow jacket nest there, and they attacked him. As he was being stung, he then got attacked by my husband who was smacking all the wasps off and killing them as they stung our son. He was stung by well over a dozen insects, and each one stung him numerous times. He was covered with welts and screaming in pain. I got out all the stingers that were left over from the wasps my husband killed while they were stinging our son. Then I took him right to the car to drive him to the hospital.
He got very quiet, so I called 911 and pulled over into a nearby parking lot. The fire department, police department, and EMS came. My poor son was in too much pain and too upset to be at all excited about the trucks. The EMS persons observed him for a few minutes, and since they didn't see any allergic reaction, they said that we could either choose to have him looked at in the ER or take him to the local pediatric ER. So, we chose to take him to the local pediatric ER to forgo the hospital experience since there was no immediate danger.

On the way there, he was screaming for us to turn the pain off. It was horrible and pathetic. We stopped off at home on the way to the doctor and I gave him some Tylenol with codeine that we had left over from a surgery he had last year. It did nothing for his pain. When we got to the doctor's office, they gave him a shot of morphine, some benadryl, and a prescription for percocet. He's resting comfortably now. We have the baby monitor in his room so we will be able to hear him if he wakes up.

Poor thing can't catch a break. I'm just glad he's going to be okay.

It Took Awhile, But...

2010-07-16T22:46:00.003-04:00

I finally got my son to look under his pillow, and he was very happy to see Sir Topham Hatt there. When my husband got home from work, I asked my son to tell his Daddy who gave him Sir Topham Hatt, and he pointed to his mouth and said tooth. I guess he couldn't remember the word fairy, but he got the idea! It was very cute to see. He took Sir Topham Hatt with him everywhere today, and then took him to bed. How cute.

My Son Lost His First Tooth Today!

2010-07-15T22:56:00.004-04:00

This is a little Sir Topham Hatt in his car...The Tooth Fairy confided in me that this was what she'd be leaving under my son's pillow tonight...

My son lost his first tooth today. My husband was the one who noticed that the tooth was loose. He said that it looked like my son's tooth was growing in sideways. I said I never noticed, and when I looked, it looked perfectly straight...hmmm...strange. So I thought, "Maybe it's loose!" When I was brushing his teeth, I was very gentle, and I did notice it moving. Then today I noticed that he had blood on his cheek. I was looking and looking for a cut, but I couldn't find anything. Then, at the same time, my husband and I said, "Tooth!" Sure enough, there was a space where one of his bottom front teeth used to be.

I spoke to him about his tooth being loose because I'm sure it hurt, and I wasn't sure if it might have frightened him. I told him that a grown-up tooth was growing in and pushing the baby tooth out, and that it was a happy thing and meant that he was growing into a big boy. We haven't found the tooth. My son probably swallowed it. We think it probably came out while he was eating an apple. I checked the apple and the floor around where he was eating the apple, but no tooth. The tooth fairy will be visiting nonetheless. I don't think he would understand money, so we requested that the tooth fairy bring a small toy. We told our son to look under his pillow in the morning to see if the tooth fairy brought him a present for losing his tooth. I'm really not sure exactly how much he understands, but I am sure that he will understand Sir Topham Hatt. :)

Tornado?

2010-06-26T23:04:00.005-04:00

No, it wasn't a tornado, but it sure seemed like it at the time. The same storm did spawn a tornado in Connecticut. This damage is just from a down burst with wind speeds around 100 miles per hour. I was just turning into our apartment complex, and the sky suddenly darkened dramatically. The wind hit the car like a bullet. I pulled into the parking lot by the local deli right in the middle away from any trees. I was proud of myself for keeping a clear head. Huge trees fell all around us as the wind roared and the rain flew sideways all around the car. My daughter was in the car with me, and she was screaming and reaching out to be held. I stroked her leg instead, knowing that she would be safer in the car seat. Of course the safest place would have been in a basement somewhere, or laying flat in a ditch, but it came on so fast that there wasn't time to do anything, and thankfully, it wasn't a tornado. It blew through in just a couple of minutes and then the sun came out. As I pulled out of the parking lot and drove down the driveway toward the apartment, I had to drive over the grass as trees had fallen across the road and onto other people's cars. Huge trees were pulled out by the roots and snapped in half. Some trees were sheared at the top. I was grateful that nobody was hurt. Everyone who saw the storm was sure it was a tornado, because that's what it looked and felt like, but according to the National Weather Service, there was no rotation. It was sure scary though. I'm grateful to God for keeping us safe. The down burst occurred at 1:30 pm when my son was safely in school, my husband was safely at work. Thank God!

Where has the time gone?

2010-06-17T14:58:00.004-04:00

Oh, it's been so long since I've posted. So much has been going on. I helped my Mom move from our old home to her new apartment, I went on a Tres Dias weekend (http://www.tresdias.org/), my son has become aggressive again, my pocketbook is gone for the second time in a month, and my husband has had shingles. I really need to sit down and post some of the interesting stuff that's been going on. I haven't been home, or I've been taking care of sick folks, or I've been trying to keep my son from injuring my daughter. Busy, busy, busy with little time to sit at the computer.
We did manage to fit in a couple of fun outings which I will also post about. I tried to post some pictures, but the website just isn't letting me. :(
You'll hear more from me soon. :)

Behavioral Techniques

2010-05-22T14:40:00.001-04:00

In addition to medication, we are using a number of behavioral techniques to help my son adjust to changes in his environment.

My son is a very visual learner, so we have pictures taped up all over our apartment. We use pictures for the calendar, we use pictures for schedules, we use pictures for communication, and we use pictures to help my son express and handle his emotions. These techniques are somewhat effective and can help to relieve my son's stress, which helps to alleviate everyone's stress.

Since my son's speech still sounds like babbling, he can be very difficult to understand. We use pictures for communication so that he can point to a picture to help explain what he's trying to say. He also uses some sign language, and is also smart enough to sing, or make pantomime to show us what he's trying to tell us.

Picture schedules help him to anticipate what is coming next so that he is more relaxed when his environment changes. Unfortunately, last minute changes to the schedule or complete abandonment of the schedule due to something like my daughter teething or my son having a difficult day full of tantrums still cause difficulty.

The newest thing we're doing is using picture boards to help decrease my son's head banging. This has been the least effective, but we still keep trying since learning disabled kids can take a very long time to learn a new skill. The pictures are supposed to help him to identify why he is hitting his head and provide him with an alternative behavior.

So, these are just some of the behavioral techniques we use with my son. We're all learning together. My son responds extremely well to positive reinforcement and loves receiving as well as giving affection, so that makes everything better.

Preschool

2010-05-21T23:23:00.008-04:00

Part of what I do at home is teach preschool for my daughter and my son when he's home. I don't do it every day, but I do it at least a couple of days per week, which is probably enough for a 19 month old. I always do it on Saturdays when both kids are home and my husband is working all day. It passes a couple of hours, and I'm sure it's good for them. They like it, anyway. Some days my son has a bad day and we never make it all the way through because I have to deal with too many tantrums, but that's all part of having a child with autism.

I taught special ed preschool during the summer between high school and college, so I learned a lot during that time. So, we do the calendar, circle time (story time and singing), the alphabet and counting, and arts and crafts, coloring, or a worksheet.

I also learned a lot while my son was receiving early intervention at home. So, I've learned a little occupational therapy, a little speech therapy, a little special education, a little feeding therapy, and a little physical therapy. So, I try to do whatever I can with the kids. I'm hoping this helps reinforce what my son is learning in school, and my daughter is learning like a sponge.

Teething

2010-05-21T23:02:00.005-04:00

Ugh. I haven't been sleeping much, my house isn't very clean, and I'm tired. My daughter is teething. Poor thing is getting a lot of teeth at once and to top it all off, she has allergies. So, she's pretty miserable. It's 11 pm, and I should be in bed, but I get in the mode where I can't relax because I'm just waiting for her to wake up again. So, that's what I've been up to the past few days...feeling like a zombie. :) I'm having flashbacks to when she was a newborn...all the way up to 13 months old when we finally used the Ferber method to get her to sleep.

Well, I'm going to try to get some sleep. At least my son is sleeping with his Melatonin. I stole one, so hopefully, that will help me.

Birthday Cake Toy

2010-05-15T06:36:00.004-04:00

I was shopping for a first birthday gift, and I came across this adorable birthday cake toy. We're still working on getting my son to blow. We work on this using bubbles, whistles, harmonicas, and real candles. He has something called dyspraxia (like apraxia) where he has trouble carrying out movements that take a lot of planning or need to be performed on demand. It affects him most in his mouth and makes it difficult for him to eat and talk, but he has trouble with any complicated movements and balance. For example, he can't ride a tricycle or stand on one foot.

Anyway, this toy has five little candle lights that light up when you press the star button, and counts the candles and plays, "Happy Birthday", and then says, "Blow out the candles!" And when you blow on the candles, the lights go out and you hear clapping and cheering. There's a sensor in the middle of the candles that detects the blowing to get the candles to go out. However, after about five seconds, the candles still go out and you still hear clapping and cheering, so even though my son can't actually blow out the candles yet, he doesn't get frustrated. He played with this cake for HOURS yesterday. He brought it to the supermarket and played with it the entire time. My daughter loves this toy too. She figured out how to do everything on her own, and she can blow out the candles like a pro already.

So, if you're looking for a great gift for a young child or know a kid who needs practice blowing, this is a great toy. It's just adorable and a lot of fun to play with. It's also small... just the right size for little hands.

By the way, this isn't a paid post; I just really like this toy!

"I Know Exactly What You're Going Through"

2010-05-14T08:23:00.004-04:00

Rosie, one of Thomas the Tank Engine's friends
People are always telling me that they know exactly what I'm going through, and I think, they have no idea. Unless they have a disabled kid or an autistic kid, they have no idea.

Yesterday afternoon was really rough. What got me through is that I had some decompression time beforehand. Also, I now know that my son will not always be so difficult whereas he had been difficult all the time to the point where I was completely burnt out before we started the meds.

Yesterday I totally forgot about my son's neurologist appointment even though it was on my computer desktop. Somehow, I hit snooze and it didn't come back up, and I just totally forgot about it. My son came home from school, and I took off his shoes and jacket and he put his favorite toy, Rosie, one of Thomas the Tank Engine's friends, down in a location unknown to me.

Then I looked at the computer and saw that he had to be at the neurologist in a half hour. Doh!

So, I had to get his shoes and jacket back on, which he was not prepared for since he was in stay home mode. That means, he kept running away from me, slamming his head into the wall, collapsing on the floor, screaming, thrashing around, and doing everything he could to make sure that it was impossible for me to get his arm through even one sleeve. Having lots of experience with this, I was able to wrangle on his jacket. I swear sometimes I should be dressed in chaps and boots for this task. Then the shoes. He kept throwing his shoes and kicking. It took a very long time for me to get his shoes on. During all this, I also have to be aware of what my 19 month old daughter is up to as well so that she doesn't get into trouble while I'm distracted or get hit with a shoe.

Then we couldn't find Rosie. I didn't know where my son had put her. Later we found her on the kitchen counter, but I didn't think to look there. So, I had to try to get him out of the house without Rosie. He was screaming and crying pathetically for "Woe dee" and worked himself up into hysterics. But we had to go, and I tried to calm him the best I could with a quiet voice and tried to get him to take another toy, but to no avail. He was fixated, and I couldn't redirect him.

Then I had to get him down the stairs. Because he was upset, his sister was upset too. They both started flopping and screaming and crying and it was like trying to lead two large strands of spaghetti down three flights of stairs. But, I did it.

Then I had to get them into the car. My son was constantly pulling to run back inside to find Rosie, so I had to hold both of their hands in one hand so that I could use the key to unlock the car door because they both wanted to get away from me. Then I had to keep my daughter trapped between my legs inside the car door while I got my son into his booster seat, making sure that he didn't kick her with his flailing feet as he was still devastated at the absence of Rosie. He kept trying to pull the seat belt off while I was trying to get it on, and my daughter was trying to wiggle away. But I did it.

Then I got my daughter into her seat and we drove to the neurologist's office with the two of them screaming inconsolably. Then we got to the office and I had to get them out of the car and into the building. My daughter had calmed down by this point, but not my son. His tantrums can go on for hours.

I had to carry my five year old son and my daughter to get them inside and to the elevator. My son didn't want to go on the elevator, so I had to try to keep him in a semi-upright position as he tried to fling himself away from me. The elevator finally came, after what seemed like forever, and we went up to the third floor. We got off the elevator, and my son collapsed on the floor kicking and screaming because he's afraid of the height. The building is designed in such a way that there is a central atrium, and the offices are around the perimeter with glass railings so that you can see down into the atrium. He wouldn't move and tried to kick me away every time I got near. I was finally able to get him to walk to the office, screaming and pulling. We got into the office, and he was still upset and asking for Rosie.

Thankfully, we got called in almost right away, and then we had to deal with screaming, kicking, and collapsing because they wanted him to stand on the scale and use a stethoscope on him. In the meantime, he was trying to pull apart the blinds, play with the computer, pull all the wires on the computer, and play with everything on and around the desk. I dealt with this while still having to watch my 19 month old as well.

After the appointment, we had to get out of the office, and he kept hooking his feet on the door frame so I couldn't get him out. I eventually did and had to carry him to the elevator thrashing around again.

So, is this REALLY what folks with normal kids go through? Do you REALLY know what it's like to do that all day long every day? Really?

So, things have been much better since my son is on meds. This used to be my life every day with my son head banging my face and my daughter. Now it's only sometimes, and he never hits me or my daughter. It's still exhausting. I pray for strength and patience every single day.

So if I'm ever late, or I ever look like I just went through a war, now you know why.

Another Great Morning!

2010-05-13T09:16:00.003-04:00

This morning my son was awake before I went in to wake him up, but he was laying in bed quietly sucking on his fingers and his sleeve (so cute). I went in to get him ready for school and gave him some tickles (gentle stroking, not to make him laugh) to wake him up a little more and got him dressed without a single act of fighting...no screaming, kicking, trying to run away...nothing. He didn't want to brush his teeth right away, but after I asked him a couple of times, he stood nicely for me so I could brush his teeth wash his face and brush his hair. He complained slightly about putting on his jacket, but I just said, "It's okay," and he put it on without any further trouble. Then he picked which choo choos he wanted to bring on the school bus, and went very nicely downstairs to wait for the bus. He sat on the stairs and sang and played with his trains and I sang one of his favorite songs to him...I love you a bushel and a peck. Then he said, "I love you" and hugged me! It was unbelievable. He was excited when the bus came and I could just keep up with him when he made a run for it. It was great. That's two days in a row now of mornings that never happened before. Maybe one or two things would go smoothly, but not everything...and not two days in a row. His teachers and the bus driver report that he seems happier and he's been singing a lot. I'm so happy. I hope he continues to feel good on the Melatonin.

My Daughter's M's

2010-05-12T22:40:00.003-04:00

A drawing with embedded m's done just today by my very talented daughter.

Recently, we were sitting at a restaurant table waiting for our food. My daughter and son had their kiddie menus and crayons and were being very well behaved coloring and drawing. My daughter started saying, "Emmmmm. Emmmmm." I thought it was very cute. Then I looked at her paper and saw little m's all over it. She just loves to draw m's. I've been practicing writing her name with her, and she's learned the M. They're not the most perfect m's, but they are definitely m's, she is consciously making m's while she is saying, "emmmm", and she's just 18 months old, so I think she's really cool, and I am pround of her m's. :)

Melatonin!

2010-05-11T22:42:00.005-04:00

I don't know what took me so long to try melatonin for my son. Everyone I've spoken to with an autistic child swears on it for helping to get their kids to sleep.

Usually our evenings are consumed with going into my son's bedroom dozens of times over the course of several hours to see why he's frustrated and banging his head and trying to calm him down...even involving a trip to the emergency room. Usually he doesn't fall asleep until 11 or 12. Tonight he was asleep before 9. No tantrums. No head banging. Last night he fell asleep around 9:30. He woke up without any grogginess. In fact, he was happier this morning than I've seen him in ages. It was even relatively easy to get his jacket on this morning, which is usually a huge fight.

I'm always leery about using over the counter meds, but my son is closely followed by many specialists, so everyone will be looking out for any possible negative side effects. The most common ones are hormonal fluctuations, but his hormones are constantly monitored, so we'll be keeping an eye on that.

All of the scholarly articles I've read about treating children on the autism spectrum who suffer from sleep difficulties with melatonin report nothing but positive outcomes. In fact, beyond just the children falling asleep earlier, sleeping better, and sleeping longer, studies have noted a decrease in obsessive compulsive behaviors and happier parents. :) They report that negative side effects are commonly associated with very high doses and that the doses recommended (under 10 mg) appear benign.

So, after feeling so bad about medicating our son, he's doing pretty well. He can control himself better, he's happier, he's getting more sleep, my daughter is no longer in danger, I'm not covered in bruises, and we can enjoy our son again.

Wonderful Mother's Day!

2010-05-09T23:46:00.003-04:00

Well, I had a wonderful Mother's Day! I got the most beautiful cards from my husband and children, and then we all went to spend the day with my Mom. We went to mass and had lunch and then went window blind shopping for my Mom's new apartment.

I got chauffeured back and forth by my husband, and he changed all the poopy diapers, served my dinner, picked up the toys, emptied the dishwasher, got the kids ready for bed, and rubbed my feet. I don't think it gets any better than that!

Thank you Sweetheart for a wonderful day!

Never Enough Patience

2010-05-06T22:15:00.005-04:00

I pray continually for more patience, but it doesn't always come. I have a very bad trait in that I get very grumpy and impatient when I'm tired. Very often my son won't fall asleep until after midnight, and sometimes I'm up until 2 because I don't start housework until after he goes to sleep because I have to constantly go into his room because he bangs his head. Or, I get stressed out from all the tantrums, and I can't fall asleep. So, I've been getting about four hours of sleep per night over the last few nights. Tonight I vowed to go to bed early, but I hate to go to sleep before my son in case he needs me.

Also, I'm feeling horribly guilty. He always seems to want a toy I can't find, and until I find it (or my husband does), he will scream and smash his head into the wall. I got angry because I couldn't find the toy he wanted, and told him he just had to go to sleep. It was nearly 10 pm, and I was tired and just needed the day to end. Both kids have basically stopped napping, I haven't been sleeping, and I yelled at my poor son for doing something he can't help, and that of course got him more upset. My wonderful husband found the toy my son wanted, and my son quieted down. I felt horrible.

I went into his room and held him and rocked him and cried feeling like a horrible mother and thinking in my head that I was so sorry he didn't get a better Mommy. I told him how sorry I was that I lost my patience and I tucked him in and rubbed him.

My son being the sweetheart that he is forgave me without a moment's hesitation and just enjoyed being rocked and rubbed.

Why can't I just be more patient? Why is it so hard?

If you've ever watched 19 Kids and Counting, the mother, Michelle Duggar, had a baby at 25 weeks gestation, and has been at the hospital with the baby ever since. She didn't sleep for weeks when things were touch and go, and still with all the stress and lack of sleep, she remained cheerful. She never yells. I don't know how she does it.

Guess What? I Love You!

2010-05-04T23:19:00.003-04:00

My son surprised me today. I never know exactly how much information he understands or retains. Today, I observed some evidence that some of what I say is definitely understood. This, I think, should give hope to anyone who is waiting for their child to speak.

I must tell my kids a thousand times a day how much I love them. I have lots of different ways I like to do it. One way is I start out with, "Guess what?" Then I say, "I love you!" Today I said, "Guess what?" And my son answered, "I love you!"

I can't tell you how happy this made me. I even got a kiss. There's nothing like hearing your child say, "I love you"...especially when they've been essentially non-verbal for five years.

For all those people who have told me that I'd be sorry when my kids started talking because they'd never shut up, I am so happy to hear every word, and I hope they never stop.

CPSE-CSE Meeting

2010-04-28T16:19:00.007-04:00

CPSE stands for the Committee for Preschool Special Education, and CSE stands for the Committee for Special Education, which encompasses the next 12-16 years of school. These meetings are held annually to discuss student progress, and next steps. They can be intimidating and emotional.

The meeting was headed by the assistant director of pupil personnel services. She was joined by a special education teacher from the school district, a regular education teacher from the school district, my son's teacher, me, a school psychologist, and another person from the preschool, whose position I can not remember.

There were three parts to the meeting. The first part was the annual CPSE meeting, which would discuss whether or not my son would be eligible for the Summer Program. The second part was the preschool summary meeting, which would evaluate how much progress my son has made during his two years in preschool. The third part was the CSE meeting, which would discuss my son's classification, and where he would be placed now that he was entering the public school system.

The CPSE meeting reviewed my son's progress over the past year, and that he has started to eat some fruit, drink from a straw, take off his coat, and talk, although most of his speech still sounds like babbling. Because of his severe delays and his tendency to regress when he's absent from school, it was decided that he was indeed eligible for the Summer program. That was good.

Then part two of the meeting evaluated how he had progressed throughout his preschool "career". It was a little like the Newlywed Game. The teacher and I had to pick a number from 1-7 to describe how well my son was able to do something, 1 being not at all, 3 being an emerging skill, and 7 being a mastered skill. Then the meeting leader would tell us what my son's score was during his initial evaluation before beginning preschool. All of the scores remained exactly the same except for self help, since he can finally tell me if he's hungry and request a bottle, some water, or some fruit. This was the only area where there was improvement, where my son went from a 1 to a 4. This was disconcerting, upsetting, and sad. Then it was on to part three.

The third part of the meeting was the CSE meeting. The first order of business was to discuss how my son would be classified. Because he is on the autism spectrum, and also has dyspraxia, growth hormone deficiency, and other muscular and neurological issues, as well as very little ability for self-care, he has been classified as a child with multiple disabilities. Because he is so very delayed and needs so much assistance to do absolutely anything, he can not go to a regular school, not even a special education class in a regular school. The best ratio in a school is 15:1, and this is not good enough for my son. So, it was suggested that he be placed in a BOCES (Board of Continuing Education Services) school program for children on the autism spectrum. The ratio there is 6:1:2...six students, one teacher, and 2 assistants. He will be able to continue to receive speech therapy, feeding therapy, occupational therapy, and physical therapy in addition to behavioral and psychological services. His case will continue to be reviewed annually, and depending upon his progress he will either be moved to a regular school, or he may remain in this program until he graduates high school, which he has until he is 21 to do. Should he remain in this program, he will not be required to take state exams or regents, and will graduate with an IEP diploma. IEP is Individualized Education Plan, and is a course of action used to evaluate the requirements and progress of special education students. An IEP diploma is not the same as a regular diploma or even a GED. It's basically a certificate of completion only. The program does provide counselling and job training and placement, however, so that he would be able to work in whatever capacity he was able.

He will be in a school with other children like himself, and will have every opportunity to succeed at the best of his capabilities.

The school is 1/2 hour away, and he would be on a special bus with a matron, and would receive door to door service. Because he's little, he will also be getting a car seat. These are also very good things.

It was upsetting and gratifying at the same time. I know what his issues and problems are. I couldn't imagine him going to a regular school and riding the bus with all the other "normal" kids who could be very mean, and without a bus matron to supervise him. I couldn't imagine him going to a regular public school, even with a special education class, and then mixed in with other classes. I didn't know about the BOCES school, and I was so happy to hear of a place that I think would be just perfect for him...a place where he would be with other kids just like himself, getting all the services, help, and supervision he needs. I was also a little sad, because it's always difficult to have to focus on your child's problems, and to have a qualitative record of his lack of progress. There's always a bit of a period for me when I mourn my son's struggles, and imagine the future, and think how are we going to get through all this?

Then I see his smiling face, and remember to take everything one day at a time, one hug at a time, and know that love and faith will get us all through.

Tent!

2010-04-26T07:58:00.004-04:00

I bought a tent for my son several years ago because it's supposed to be a great developmental toy. Now he and my daughter love playing in it together...and around it...well, just running in and out and around the tent is great fun. The best part is to see the hair-dos created by the static electricity that builds up running through the material. Apparently, there's just nothing better than a tent.

Busy Week!

2010-04-20T11:49:00.004-04:00

Drumming! My daughter running around at my son's kiddie party with her "Minnie"... she calls all animals, stuffed and real, "Minnies" after our cat Minnie. LOL

My son coming out of a jumping toy at his party.

My daughter coming out of the same toy.

Well, since my son's birthday, we've all had colds. We were feeling particularly miserable Thursday and Friday, but by the weekend, we were feeling a little bit better and still did the things we were planning for my son's birthday weekend.

My son LOVES drums. Our baby sitter's boyfriend plays the drums. We're very blessed to have found a babysitter who loves our kids! She told her boyfriend about my son, and he offered to bring his drum over. So, I thought that in return, I'd cook dinner. I told my next door neighbor about it, and she said she'd love to come over with her husband and daughter. So, it turned into a regular little party.

My baby sitter's boyfriend and my son played duets, and my son followed his rhythm. My daughter and next door neighbor's daughter also played the drum.

I made a lasagna for dinner with salad and garlic bread, and my next door neighbor made Emeril's Chocolate Cream Pie which was TO DIE FOR. Here is the recipe.

It was a great night and everyone had a wonderful time.

Sunday we went to church as usual (well, lately anyway we started going again before Easter), and the children were HORRIBLE...the worst they've ever been. We were even locked up in the back of the church behind closed doors, but when they opened the doors to let people go up for communion, my son booked up the center aisle right up onto the altar. So, I had to chase him down and retrieve him. Well, it's a children's mass, and by now everyone knows my son because he's impossible to miss seeing and hearing, so I doubt anyone was terribly surprised.

Then in the afternoon we had a little kiddie party with some boys from his class at a local place that's filled with inflatables to jump on and climb on and slide down...the perfect place for a bunch of hyperactive boys. Everyone had a great time there too. My son refuses to take off the participation bracelet they gave him when we went in. LOL

It was a great weekend!

My Boo is Five Years Old Today

2010-04-13T21:30:00.004-04:00

The fire engine cake I planned to make for my son for his birthday.

My failed attempt at the fire engine cake...the poor thing disintegrated and collapsed. :(

My son turned five years old today, and we had a great day. My husband and I woke him up by singing happy birthday, and he loved it. I baked cupcakes for his friends in school, and he was so excited by them! There have been so many times when he didn't pay any attention to gifts or birthdays or Christmas or any other holiday, so the fact that he was excited by the cupcakes is a huge deal! He even counted the M&M's on the cupcakes...there were three on each one. He was adorable. Then when he came home from school, there were a couple of cupcakes left over, and he wanted one!!! So, he and his sister had cupcakes for snack. He didn't eat it, but he did lick the frosting, which is also a big deal!

I had planned on making him a fire engine cake, and found what I thought would be an easy one to make by Betty Crocker. However, it was not easy, and my cake disintegrated into crumbs until it collapsed. So, I called my husband and asked him to pick up a cake on the way home, and we had ice cream cake instead.

My son wasn't feeling very well because he has a cold, and in fact, we all have colds. My husband feels worse than any of us, poor guy. So, we didn't have the neighbors over for cake like we planned, but I did bring them over a few pieces.

My son loves having happy birthday sung to him, and he tried really hard to blow out his candles. He even opened up his birthday card and present...which he also never does. So, we were so happy! He loved listening to his happy birthday song message from my mother, and Then my brother called to wish him a happy birthday, and he said, "Hello Uncle R..." and thank you. Wow. It was a great night. :) What a great birthday for my Boo.

Happy Birthday sweet boy. Mommy loves you.

A Serious Case of the Giggles

2010-04-12T00:36:00.004-04:00

With all the toys and other items of amusement my kids have, who would have thought that this shirt hanging on a hanger on the coat closet would be what the kids played with most tonight.

They had a serious case of the giggles. My son was making my daughter laugh until she couldn't breathe by spinning this shirt around the doorknob. She would count to three, and he'd give it a whirl, and oh boy, was that funny. If it spun off the knob and fell on the floor, well, that was just too much. My husband videotaped most of it. The video is all shaky because he was laughing so hard.

It's moments like this I remember when things get difficult. :)

Walk Softly and Carry a Big Stick

2010-04-11T10:26:00.004-04:00

We went hiking yesterday. It was a little windy and cool, but it was still a beautiful day. My son did not want to go. He wanted to stay home. So I forced him to go. I had to nearly drag him down the trail...after about five minutes, he was just fine, and then it was nearly impossible to get him to leave afterwards. As any typical boy, he was always on the lookout for a good stick to carry, and so long as he didn't swing them around, I let him. He found a pretty large branch that he dragged behind him like a rake. His little sister, always looking up to her big brother, also found herself a suitable stick to carry. They had a lot of fun, and how cute!!!!!

Daddy Was a Very Good Boy

2010-04-01T23:21:00.004-04:00

My daughter loves stickers. Since we got to a lot of doctors for my son, she also gets stickers at the end of the appointments for being a good, patient girl while we pay attention to her brother. So, whenever stickers are available, she loves to put them all over us and herself. She just loves my husband, and even has a little "Daddy Dance" that she does when he gets home. I just got one sticker, but Daddy must have been a really good boy because he got lots of stickers. How cute is she? I can't stand it...ohhhh and those curls!!!!!!!!!!

Annual Reports/ CPSE/My Silly Kids

2010-04-01T00:16:00.005-04:00

CPSE stands for the committee for preschool special education. Each year they are required to meet with the parents using the annual report prepared by the teachers and therapists to discuss services the child is eligible for during the following year. The first meeting I attended was during the transition from early intervention, where my son received therapy at home, to preschool, where all of his services would be provided in an educational institution. Now we're already working on the transition to kindergarten.
Reading the annual report is always difficult. By necessity, it focuses on the negative because all of the problem areas (or as Avis Rent a Car always used to call them...areas of opportunity) must be identified and strategies must be suggested.
Progress is painfully slow with my son. In two years he progressed from being 12-18 months developmentally to being 18-24 months developmentally. Everything is difficult for him.
However, he's still my little boy, and while I was feeling all upset about his report, he came over to me, leaned his head on me and said, "Ahhh Mama." That made my day.
I just love him so much. I always tell him "I don't know what to do with you" followed by, "I guess I'll just have to kiss you." He thinks that's funny.
He has such a wonderful sense of humor and loves to laugh. He and my daughter are always cracking each other up until they are absolutely hysterical. Today we went out to eat at Applebees with a gift certificate my husband received for his birthday, and the people in the booth next to us were laughing. So, my son became hysterical just enjoying laughing along with them. This of course made my daughter laugh too.
My daughter is picking up words left and right, and also has an incredible sense of humor. We're laughing here all the time. Everything is funny. Today when we asked her where we ate, she said, "Applebees". She loved the big apple on the sign and exclaimed, "Apple! Apple!" She's a pure joy.
Someone walking by our table in the restaurant said we had such well behaved children. They really were very good. We were grateful.

EKG Results/ Tenex

2010-03-26T22:31:00.005-04:00

Sorry I was gone so long. We've been sharing a horrid stomach virus all week.

Well, I called the doctor to get my son's EKG results, and she said they showed he was a little tachycardic. That means his heart rate was too fast. I told her he was screaming his lungs out, and she said that then the EKG was normal. So, we decided to start the Tenex.

Tenex is actually a blood pressure medication, but it is also used to treat children with ADHD and autism to decrease aggression, increase attention span, and help them fall asleep at night. The side effects are dry mouth, dizziness, and drowsiness.

Just filling the prescription was a little bit difficult because it only comes in pill form, so I was trying to discuss with several different pharmacists how to administer it to my son since he will not take a pill and he doesn't eat any food so crushing it into applesauce isn't an option. They had no suggestions. Ugh. So I asked if I could get a bottle of flavored syrup so I could mix each crushed half pill into a little syrup and give it to him with a syringe. However, for reasons that have escaped me, they can not dispense the liquid without a medication dissolved into it, and they can't dissolve pills into it, and Tenex does not come in liquid form. So I told them to fill the prescription, and I said I'd figure something out. I bought a pill splitter and a pill crusher, and then went to the grocery store for inspiration. I thought about syrups. Sundae toppings seemed too thick to use with a syringe, and then I thought about grenadine. Grenadine is pomegranate syrup used to make Shirley Temple drinks, and it's delicious and has a low viscosity or thickness. So, I bought that.

I went home, split the pill, put half of the teeny tiny pill into the pill crusher, and the pill was really too small for the crusher because it never became a powder. Then I poured a little bit of grenadine into a medicine cup, which somehow splashed and stained the counter and the floor. I poured in the crushed pill, but some of it stuck inside the crusher. So, I used a knife to try to scrape out the medicine and mix it in with the liquid. Then I sucked it into a syringe, but some of the pill got left behind. So I crushed the rest of the pill with the end of the knife, put some liquid back, and sucked it back into the syringe. Then I went to give it to my son and told him it was yummy. He still spit some of it out. So, I don't know exactly how much he got.

I tasted it, and it didn't taste bitter at all. He just doesn't like anything. It was so frustrating.

Still, I hoped he had gotten enough of the medication in him, and was looking forward to him falling asleep easily and then having an easier day today. However, he was up banging his head just as late as usual, and had just as much of a tough time today with aggression and frustration.

I thought maybe if I give it to him a little earlier it would have more time to work before he went to bed, so I gave it to him late this afternoon. I didn't even bother with the pill crusher. I just smooshed it in the medicine cup with the tip of a knife. I was extra careful with the syrup, and despite my best efforts, he still managed to spit out some of the liquid. Arghhhh. I didn't notice any difference at all. I don't know if it takes time for Tenex to build up, if the dose is too low, or if he's spitting out too much, or if it's just not working.

I was so disappointed. I wasn't expecting a miracle, but I was hoping for a day that was at least a little easier than usual, and I didn't get that. Oh well.

We have a followup with the neurologist in six weeks, so I'll discuss it more then. I believe Tenex also comes in patch form, so that may be another option for us to try.

We'll see.

EKG Went...Okay, I Guess

2010-03-21T00:00:00.005-04:00

I won't get the results for a few days, but we were able to complete the test. My son was in no way cooperative. He started to tantrum while we were still registering for the test. By the time we got into the room, despite the fact that all he needed to do was sit for a few minutes with some stickers on his chest, he was screaming, kicking, and thrashing around. What may be simple for some folks is not simple for him. It was terrifying for him. The technician and my daughter were absolutely shell-shocked. I went into Mom Mode. I remembered our experience at the dentist and started giving the tech directions. I told him to get the chair at his desk and bring it over to face me. Then I told him to sit and face me in the chair, and put a pillow on his lap. I sat my son on my lap facing me, and then laid him back onto the pillow, and I held him there gently and sang to him while the tech did what he needed to do. It wasn't perfect because my son was screaming and wiggling throughout the whole test, and it lasted longer so they could get a decent reading, but we got it done with no drugs, and in one visit, so that made me happy.

That night I was in bed by 7, absolutely tuckered out.

EKG Tomorrow

2010-03-18T22:25:00.004-04:00

Well, we're going to try to get my son an EKG tomorrow. I don't know how they're going to get him to sit still...I have a feeling he's going to freak out and we'll have to get a prescription from our pediatrician for some sort of mild sedative...we have to be careful because sedatives can skew the results. So, we'll see. My son also needs more blood work done tomorrow. We got half done last week, and have to finish the rest tomorrow. They couldn't take all the blood at once, and the blood needs to be drawn a week apart. The tests take a long time to complete, so we have to have the blood drawn as soon as possible so that the tests are completed by the time we return to the geneticist. I know it's a lot to do in one day, but the tests are very quick, so maybe it'll be okay...we can even go to the playground in between to break things up. We've been through much worse. It's best not to make a big deal out of something that isn't a big deal.

Then we can enjoy a lovely weekend of warm weather, our responsibilities taken care of.

Have a great weekend!

Living with PDD-NOS in the Family

2010-03-15T08:17:00.005-04:00

I found out a friend of mine from high school has a child with PDD-NOS (that's pervasive developmental delay, not otherwise specified, which is on the autism spectrum). Her son is 12. I was looking at pictures of him on her Facebook page, and saw my son older. Her son looks like mine and wears glasses like mine. She gave me her phone number and I will be calling her soon to talk about her experiences with medications and therapy and advocacy. It will be nice to talk to someone who's been there.

Yesterday my son head butted my 17 month old daughter hard enough to knock her down and leave a bruise on her head. I hope that medication helps. He still needs to get his EKG first because the medication, Tenex, is a high blood pressure medication that's used "off label" for autistic and ADHD kids to help them calm down, sleep, and decrease aggression. The therapists and teachers at school are dead set against it, by I have to protect my daughter too.

Just getting ready in the morning is difficult for my son. He usually doesn't want to get up (although this morning he woke up singing) and bangs his head. He doesn't like to have his diaper changed, so he bangs his head. He didn't want to go to school today, so he banged his head. He wouldn't let me put on his shoes, he insists on wearing his boots. So, I gave in. He won't wear his spring jacket, he insists on wearing his winter coat, but he wouldn't even let me put that on. His not wanting a coat on has been going on for a week or so. I've tried singing, coaxing, having him try to put it on himself, choosing which coat to wear, and asking if he wants it on at the top of the stairs or the bottom of the stairs, but I always wind up having to wrestle and force his coat on. If we go out, he only wants to go in one of our cars. If we want to take the other car, he has a huge tantrum. If we're on the way home and have to stop someplace on the way, he gets upset because we're supposed to be going home. Everything is difficult. Everything takes tremendous patience.

I was talking to a friend yesterday who works with my husband, and she told me how tired he looks. He works three jobs so that I can stay home with the kids. He makes a lot more money per hour on the weekends than I could ever make, and that's why he works and I stay home. We are each other's only source of respite, and we're completely drained. I have a mother's helper come over for two hours a week so I can catch up on cleaning, but my husband and I never have time for ourselves. We've only been out alone twice in the past three years, and that was just for dinner. We're both tired. He works all the time, so I'm home alone all the time. I felt so guilty that he has to work so hard and he's tired. If my son could go to daycare, or if there were someone who could watch him and my daughter during the day when they are sick or, when I have to go to therapy meetings, or when they have to go to specialist appointments, then I could work. I'm very grateful for how my husband works so hard every day, and then he comes home and plays with the kids so I can cook dinner. He's a wonderful husband and father, and I am absolutely blessed to have him in my life.

Aries - The Ram

2010-03-14T08:21:00.008-04:00

I'm not a believer in astrology, but I think it's ironic that my son is an Aries (the ram), and he head butts almost constantly. As my son's head banging has increased in both frequency and intensity, we've been investigating solutions to keep him from hurting himself and us.

We've been working with the neurologist and are looking into trying medication, and we are also working with the entire team at his school to explore behavioral modification techniques. I personally think it's going to take a combination of both, but of course the neuro thinks the meds will work and the school team is dead set against them.

The behavioral modification techniques take time, and because my son bangs his head very hard, bangs his head into glass, and bangs his head against other people, I'm not going to give it a whole lot of time out of safety concerns. I think I'll give them a month and see how it goes. Then I think I'll try the medication if we need to.

The medication the neuro prescribed is Tenex, which is a blood pressure medication. In kids with autism or ADHD, it decreases aggression, increases focus and attention, and has a calming effect. Unfortunately, it can make the kids very tired. It also can dangerously decrease blood pressure, and before it can be administered, my son has to get an EKG. So, that's a little scary. Also, it only comes in pill form, so that will be a challenge to deliver as well.

It's difficult to be judged by the school team who are clearly anti-meds, but I tried to get my point across that I don't want him to put his head through a window, and that he's already injured me, and I'm afraid he'll hurt my daughter. I don't think they get it.

I will do what I've done ever since I've had children; I will go with my gut.

My Son Has the Best Cow Licks

2010-03-12T13:11:00.003-05:00

My son has fabulous morning and hat hair. I love it. He has huge cow licks all the time. I don't know what he thinks when I tell him that I don't know how a cow got into his room. LOL

Today when I was brushing his hair, I put in a little spray conditioner first and got it all to stand on end. When I showed him in the mirror, he was hysterical. My son has a wonderful sense of humor.

When he was a newborn, his hair stood straight up too, and I used to brush it straight up on purpose because it was just the cutest thing. Ah, my Boo.

Parade!

2010-03-10T05:59:00.005-05:00

My son actually ate a little bit of pretzel. Waiting for the parade to start. Another view.

Fire engines!

St. Patrick Himself.

My son loves parades. This is a little confusing to me because he's terrified of dogs, the vacuum, and my hair dryer because of the noise, but has no problem with sirens and drums. Go figure. However, we always have problems getting him into the bathtub, but he has no problem running straight into the ocean. I guess that's one of the reasons people think of Autism as a puzzle...

Anyway, we went to the largest St. Patrick's Day Parade in Dutchess County, and got there nice and early so that we could get a good view. The parades upstate are geared toward children. Many years ago, I seriously considered moving to the Midwest because of how different the lifestyle is, how people seem more considerate, how important community is, and how they gear community events toward children. I'm very happy to find a similar atmosphere where we live now.

Where there might be a lot of public drunkenness at other St. Patrick's Day Parades, not so at the Dutchess County parade. It is geared toward children. Children make up a large number of the marchers, and the marchers throw candy and costume jewelry to the children on the sidelines. As far as I could see, everyone was very well behaved, including my son, and it was really nice.

My son has a tendency to run away from me, so I wrote my cell phone number on his arm and told him to show someone his arm if he gets lost. I didn't want to keep him cooped up in the stroller, but I'm terrified of him getting lost because he can't speak. However, he stayed right next to me throughout the entire parade, and didn't go so far as a single step away from me. I was so proud of him.

There were lots of bands, bagpipes, drums, fire engines, floats, Clydesdales, girl scouts and boy scouts, and local businesses and radio station personalities. Even St. Patrick Himself was there, and if my camera would always work the way I wanted it to, i.e. actually take a picture when I press the button, I would have had a picture of the front of St. Patrick instead of his back. Oh well.

One of the best things that happened is that my son ate a little bit of pretzel! I always offer him whatever I'm eating, and he always says no. That day he said yes! I was so happy!

I also met a few Girl Scout Leaders who gave me information about a local boy scout leader who is particularly good with special needs kids. My son is turning five, and will be able to enter Boy Scouts, and I think it would be great for him.

So, all in all. a great day.

The Geneticist Who Says Ni!

2010-03-05T10:48:00.005-05:00

For anyone who is unfortunate enough to not know of the Knights Who Say Ni, I have embedded a couple of scenes from Monty Python and the Holy Grail with the Knights Who Say Ni. I highly suggest seeing the whole movie as it is one of the funniest movies of all time.

Yesterday I brought my son to a new geneticist. From what I've read about him, he seems excellent.

The only problem with the appointment was that throughout the entire time, all I could think of was that the doctor sounds like the head of the Knights Who Say Ni! I was certain I heard him whisper, "Ni! I say to you!" I feared that I might be forced to find a shrubbery...or worse, two...or even worse, he would ask me to cut down the mightiest tree in the forest with a herring! Oh dear. Luckily, he just sent us off for blood work.

Like many doctors, he didn't have much of a bedside manner, but I'm really there for a diagnosis, so I don't care.

I really didn't learn anything new yesterday. We're going for more tests. The doctor is starting out with looking for metabolic syndromes because they can be associated with many of the problems my son has.

The results of the tests take months...most genetic tests take a long time. So, we'll see what happens. It would be nice to find some reason why my son has so many problems and to maybe get some sort of prognosis, and to be sure that there aren't any related conditions that we haven't been looking out for. We'll see.

Horror

2010-03-03T15:26:00.004-05:00

I didn't finish cleaning my terrace after having our food outside, and we had sherbet that had melted. I didn't realize that it had leaked out of the container. When I came inside this afternoon from getting my son off the bus, I was horrified to see a little bird struggling in a pool of syrup...it was completely stuck to the floor, it couldn't move, and in its desperation, its movement was pulling out its feathers. I didn't know if it had broken its wings, and I really didn't think it was going to live.

My mind went immediately to a commercial on television for Dawn dish detergent where they were washing a duck that had gotten stuck in an oil slick. So I got a little cup of warm water and put a little Dawn in it, and poured a little bit over the poor bird. This loosened his feathers, and he was able to move. I then poured some plain warm water over him to try to dissolve the rest of the syrup in the feathers.

The poor thing hid in a corner, and I thought for sure that it was hiding so that it could die.

I went into the apartment to get a bucket of warm soapy water and a brush to clean the terrace so that I wouldn't torture another poor birdie, and the bird disappeared.

I finally found him in the fallen tree outside. This was a good thing...it meant it could fly. As the bird preened and preened, I could see that it was a tufted titmouse. He's been back to the feeder, and I think as long as he can fly and eat, he should be okay. I put a shallow bowl of water outside in case he should like to take a bath, but he hasn't used it. I really hope he's okay. I love birdies, and the last think I would ever want to do is hurt a birdie. I feel so guilty that it was because of my own negligence that the birdie was hurt, but I am happy that I think I managed to save the poor thing.

Winter Weather Advisory - Yeah, Right

2010-03-02T10:43:00.009-05:00

Well, we had a winter weather advisory, but we wound up getting about 2 feet of very heavy snow. The tree outside our terrace fell...although I will miss our tree, its shade, its birdies, and the privacy it provides, I'm just glad it fell away from us and not on us. Here is our fire escape.

I was very concerned about the roof collapsing from all the heavy snow, but it didn't. I did hear that a roof on another condo complex did collapse, however. I hope it's not true.

Here is our shower. We had no electricity, no heat, and no hot water. We did have a trickle of freezing cold water, for which I was very grateful as many people had no water and had to melt the snow. I heated water on the stove and we used a cup to pour the water over us like a shower. It worked, but boy oh boy was it cold once we were wet!!!!!

This is why we had our trickle of water....Our water pumps are electric, so a water company came to fill up their trucks with water from a fire hydrant and deliver the water to our water tank. They worked all through the night and most of the day to do this.

When the snow finally stopped on Saturday, it was time to play, "Let's Find the Car"!

Then we drove around looking to see what the damage was like and found many more broken and fallen trees.

We had a crank radio, which is one of the best presents we ever got from my Mom, which we used to keep contact with the outside world (well, and our cell phones still worked).

Except for some difficulty with the adjustment for my son who intermittently banged his head repeatedly against the floor or wall because nothing happened when he tried to turn things on, the kids had lots of fun. We blew up some gloves into balloons, the kids helped crank the radio, we sang, we read books, and the kids ran around with lanterns in the dark.

It was so cold in our apartment that it was difficult to sleep. We put the kids in a lot of layers and bundled them under deep comforters. I think we did okay.

I'm glad it's over, though. Being in the dark and cold is really not pleasant, and having to use cold water all the time just makes the chill even deeper. We shivered ourselves to sleep at night, and I kept thinking about "The Long Winter" by Laura Ingalls Wilder and was glad that we didn't wake up with snow piled on us, we were cranking a radio and not a grinder to make bread, their only food, and that it was only four days and not seven months. I was grateful that it was winter and we could put our food on the terrace so it didn't spoil, if we did lose water there would be snow to melt, and we could keep putting more clothing and blankets on where as if it were hot, you can only take off a certain amount of clothes before there's nothing left to do. I was also glad that we had a home and weren't outside and homeless.

So, I'm really looking forward to Spring in a big way, and am grateful that we made it through all home together safe and sound even if a little cold and tired for just a little while.

We JUST Got Power Back

2010-02-28T16:40:00.003-05:00

We've been without electricity, heat, and hot water since Thursday. I used to think Little House on the Prairie was such a romantic time, but I would have made a horrible pioneer, I think.
Will post more later...going to revel in being able to flick a switch and have the lights go on, and celebrate not having to shiver myself to sleep and think about my kids doing the same. :)

Snow!

2010-02-25T21:43:00.008-05:00

I think all the boots lined up look so cute.
My son trying and failing to walk in the snow.

My daughter not even having success walking on the sidewalk.

Well, we're getting hammered by snow. We took the kids out to play in the snow today, and on the grassy areas, it's just about two feet deep and they can't walk in it. It was very difficult to try to make a snowman, and after a few minutes the kids were miserable so we came back in. Oh well. At least we were out.

The snow is very wet and heavy and dangerous. There are a lot of trees and branches down around here. My husband thought it was a good idea to bring our daughter under a tree so she could walk around because there was very little snow, but I reminded him about the branches surrounding him and how another could fall on them at any second, so out they came. We keep losing power...whenever figure skating comes on. Skiing, which I really don't want to watch, is all I get to see.

My son has been home from school for two days now, and school is already closed for tomorrow. My husband's job isn't expecting him in, so that's a good thing...I don't have to think about him traveling on bad roads, and I'll have help with my son.

My son has been having a rough few days. I'm not exactly sure why. He's been getting very easily frustrated and upset, and has been banging his head a lot. His forehead is raw, and I may have a broken nose because he head butted me very hard. I'm icing it, and there's not a lot to do for it besides that. It may be time to look into meds. If he can injure me, he can injure my daughter.

Autism is hard on everyone.

Maple Sugar Tour

2010-02-24T14:41:00.014-05:00

This is the syrup they had for sale at the nature preserve where we took our tour. It's available for purchase from Justus Asthalter Maple Syrup Inc.

We went on a maple sugar tour at a local nature preserve. This weekend we were still sick, but not too sick, and it was the first nice days in ages...temperatures were in the forties and it was sunny. Also, it was my husband's birthday weekend, so we wanted to spend some family time together.

The tour began with story time around a fire. The storyteller told two American Indian stories about the origins of the use of maple syrup.

The first one is about how maple syrup used to drip from the trees and the people sat under the streams and got fat and lazy. Manabohzo, a Native American Hero thought this just wasn't right, and poured water into all the trees so the people had to work hard to turn the sap into syrup.

The second story was about a chief who threw his axe into a tree out of anger, and sap poured out. His wife caught it in a birch bark bowl, and used it to cook because she thought it was water. The food became very sweet, and that is how they discovered that the "water" could be turned into sweet syrup.

Each child received a small pouch that they wore around their neck, and with each stop on the tour, they received a small, laminated picture to remind them of the stories they learned. Here they received a picture of a birch bark bowl.

Here we learned to identify a sugar maple tree. We need to look for ovals, faces, and "Y"'s. The silhouette of the sugar maple is oval. The bark of the tree is shaggy, and you can see faces in it. Every branch forms a Y all the way from the trunk to the smallest twig. Here, the children received little twigs to put into their story pouch.

My husband is in the plaid jacket carrying our son in this picture.
Then we learned how to tap the sap. A hole is drilled that can only go about 2 inches deep so as not to hurt the tree. A hollow piece of wood or metal is put into the hole. A pail is hung or placed underneath, and the sap drips out. A cover is put onto the pail to keep out water and critters.

Here is what the sap looks like. It looks like water. We even got to taste some, and it tasted like slightly sweet water. Sap is 97% water, and only 3% sugar, so it takes a lot of sap and time to make maple syrup.

Here the children received a picture of a drop of sap for their story pouches.

Here is the heating element they use to boil down the sap into syrup. They keep it over low heat until the water evaporates. Different grades of syrup from Grade A Fancy to Grade B are achieved by using sap from different times during the season (there are grades in between these as well). Grade A Fancy is a light amber syrup from sap collected early in the season (right around now), and Grade B is from sap collected near the end of the season, which lasts for about 4-6 weeks.

Here is where the heating element is located, in the Sugar Shack.

After the tour, I bought some maple sugar candy and maple syrup. I am going to make up a story board for my son's class and send in the maple sugar candy so they can all taste it. Then we went out to dinner for pancakes and waffles, and I brought in the maple syrup. Boy, it was delicious! If you've never tasted real maple syrup, it has a thinner consistency than pancake syrup, it doesn't have the sickening sweet smell, and it has a wonderful depth of flavor, so you don't need to use as much. It's much more expensive because it's so labor intensive, but for a treat, it's wonderful.

It was a lot of fun to go on the tour, and great to get some fresh air for a change. Boy oh boy did we have cabin fever. If you have a chance to go on a maple sugar tour, you should definitely go! :)

Oh, Has it Been a Week?

2010-02-13T22:33:00.003-05:00

My son was sick, my daughter got sick, I have been sick, and now my son is sick again. He's coughing so badly. My husband just gave him a nebulizer treatment a few hours ago, and I'm thinking about giving him another. I know this will wake him up and then I'll have to get him back to sleep, which is no easy task, so I'm going to wait to see if he stops coughing. I feel so bad for him. He also vomited several times today and had a fever. Oh, the never ending cycle.
So, that is why I have been absent, and will continue to be until I can afford to spend time on the computer instead of in bed trying to get better or with my kids. Alas. :)

Lunch with Carole at the CIA Part 2

2010-02-07T13:49:00.008-05:00

Last Thursday I went out to lunch with my cousin Carole from Carole's Thoughtful Spot, and you can read the first part of my post here, and Carole's posts here and here.

Once we placed our orders and paid for them, we found a table and got a high chair for my daughter. When you place your order, you get little number cards that you place in a little holder on the table so the students know where to bring your food.

A student came first with my Coke, which was in a bottle. I always order soda without ice because it takes me awhile to drink it and it gets watery when there's ice in it, and I think that's yucky. I also like to pour my soda in a glass to get some of the bubbles out. Usually, when you order a drink in a cafe, it comes in a glass, so I thought it was a little odd that the waitress just brought a bottle. Then she asked me a question that I'm so glad she asked. "I dropped the bottle. Do you want to just wait awhile to open it, or should I bring you another one?" I'm glad she asked me so that the soda didn't explode all over me, but why was this even a question?????
"I'd like a new bottle please, and may I also please have a glass?"
"Oh, you want a glass?"
"Yes, please." That's why I asked for it.... hmmmm. LOL

So in the meantime, my cousin and I talked and laughed. I'd tell you what we were laughing at, but I think it was one of those "you had to be there" moments. But we had a good laugh. My daughter was as good as can be and played happily and drank her sippy cup while my cousin and I talked. Finally, my food came. I had to wait awhile to taste it because they took even longer to bring my cousin's meal.

Then, it was time. This is what I got:

Braised Beef Short Ribs
Slow-braised beef short ribs served with sautéed Brussel sprouts, pearl onions and deep-fried potato croquettes.

Except there were baked mashed potatoes instead of the croquettes...which was A-okay!

So, first I took a bit of the mashed potatoes. There was a crunchy crust with a cheesy, mass of decadence beneath. I gave some to my daughter, but she didn't want any. ?! Then I sliced off a piece of the short ribs. I really didn't need a knife. The meat just fell apart. It melted in my mouth, mingled with the flavors of wine, salt, onion, and spices. Delicious. The pearl onions were cooked perfectly, soft but not mushy. The Brussels sprouts were also perfect, tender inside and caramelized with a bit of crunch on the outside.

It was a perfect meal. I couldn't finish the whole thing, so I asked for a to-go box to pack it up in. Since my daughter wasn't interested in anything I was eating, I took out a jar of baby food for her. She was also uninterested in this. So, we went to the default...french fries. This was a hit. She ate while she transferred the fries from their container to my to-go box and back. Unfortunately, at some point, someone took my food away, so I had no leftovers to bring home in my box. Alas.

My cousin said she'd go up and get the desserts and coffee while I stayed at the table with my daughter and watched our bags. It didn't occur to me that this meant that she would be treating me and I didn't think to say anything until she got back! So, Carole very nicely treated me to:

Praline and Caramel Gâteau
Praline mousse layered with almond cake, house-made praline, and coated in dark caramel glaze.

It looks like a little mousy, doesn't it? It's so cute! And those are 24 karat gold leaf "whiskers" on the "nose".

I also had cappuccino with a chocolate biscotti. You can't really tell, but they shape the foam on the cappuccino into an apple.

You can also see in this picture all the layers of the cake. It was very creamy, and I could taste all the different flavors. The praline in the top layer of praline mousse added a nice crunchy texture within the creaminess.

As you also tell from the picture, the dessert aroused my daughter's interest (and one of the cats scratched her hand). She swiped the chocolate curl from my gateau, and enjoyed some herself. She has a sweet tooth like her mother and her great grandfather. Later, unnoticed by me, she also stole my biscotti. Well, she needs it more than me...I'm sure it felt good on her teething gums.

So after a wonderful meal with wonderful company, I was warm and full and happy. Then my daughter began to cry. She was tired. She had been an absolute angel the whole time, and it was time to go. She was out cold almost as soon as I got her into her car seat.

If you're ever in the Hudson Valley, Hyde Park area, I highly recommend visiting the Culinary Institute of America. If you're short on time and funds, breakfast or lunch at the Apple Pie Bakery Cafe is a great choice since you don't need reservations, the food is as good as any of the fancier restaurants, and you can enjoy an entire meal for about $20.

I Want to Talk to My Son

2010-02-06T22:41:00.005-05:00

There's an extremely powerful scene in the move "Mr. Holland's Opus" where a mother, Iris Holland is talking about learning sign language because she is unable to communicate with her deaf son, Cole. She is discussing sign language classes with her husband Glenn Holland, while Cole is trying to tell her what he wants. Iris can't understand Cole's request, and he grows increasingly frustrated to the point of tears. She holds him and rocks him while he cries, and begins to cry herself explaining to Glenn Holland that she wants to tell their Cole that she is his mother and that she loves him. In desperation she cries, "I don't know what he wants, I don't understand what he's trying to say. Don't you get it? You go to school every day with all these children who are normal. I can't talk to my son! I don't know what he wants or what he thinks or what he feels. I can't tell him that I love him, I can't tell him who I am. I want to talk to my son! I don't care what it costs, I don't care what the stupid doctor says is right or wrong. I WANT TO TALK TO MY SON!"

(At the end of the movie, the father sings "Beautiful Boy" by John Lennon to his son in sign language. It's another beautiful and moving scene. I sing this to my son all the time too, and he just loves it. )

This was always very moving even before I had a son, and now that I have a son with whom I have great difficulty communicating, even more so.

I was reading another blog site written by another mother with an autistic child called "A Parent's Autism Experiences" . She also had a failed attempt at using sign language with her son, but decided to try one more time. Here is a link to her post. She bought a set of DVD's, and, well, this is what she wrote:

"We tried [teaching our son sign language] again about six months ago, and what a miracle. Our little clam has opened up in ways that we never expected. He has gone from not understanding or at least not being able to communicate what he understands to having some semblance of normal communication with his parents and siblings.

We made the plunge and spent over $300 and got the “Signing Time” DVD collection. Now I’m not selling them and I could care less if you run out and buy them or not, but they have literally opened up a whole new world for us.

We have two other children, one nine and one four. All of the children love the videos and as parents we are learning the signs as well. Now our little boy can identify all of the foods he likes, as well as a variety of other activities and objects. It is so much easier to be able to say it is bed time than to have to show him the bed etc. "

I found a set on E-Bay for $200 (it's listed at $750 on the Signing Time website...whoa). I wonder if my son would do as well trying sign again. He's been starting to use more signs including the sign for "mother" and "moon", and "drink", and he's doing them correctly. He always used to only approximate signs, and sometimes still does. However, maybe he's ready. He also will sit long enough to watch a video, so now might be the right time. My daughter, I'm sure, who is 15 months old could certainly benefit too. My son's speech still sounds like babbling, and it is incredibly frustrating to try to understand what he's trying to say most of the time. He is throwing more and more tantrums, and hurts himself. He screams, "Momma, help!" But he can't tell me what he needs help with and he screams and cries and smashes his head into the wall or floor or furniture to the point where he has contusions on his head. It's horrible.

I love my son so much. I wish I could see a little bit more into his world and I think it would mean the world to him to be able to communicate with more than a very few words. So, I think I'd like to give it a try. It's expensive, but what price can you put on talking to your son?

I want my son to be able to talk to me, and I want to talk to my son.

Lunch with Carole at the CIA Part 1

2010-02-05T14:31:00.017-05:00

Cool Chandelier at the CIA

Yes, I had lunch at the CIA. I'll bet you never knew they were known for their food. The first time I ever ate at the CIA was with my uncle who took my husband and me there as a thank you gesture...a VERY nice gesture that I have never forgotten and never will. I didn't know what to expect, thinking about eating at the CIA. I figured they must have Top Secret food. I soon found out that CIA stands for the Culinary Institute of America. That's where Bobby Flay and Chef Duff graduated from, in addition to many other famous and not so famous amazing chefs. It's a renown culinary school in Hyde Park, NY. It is absolutely beautiful, and it has several wonderful restaurants both upscale and casual.

As a matter of fact, I met my cousin Carole from Carole's Thoughtful Spot for lunch at the CIA yesterday. She wrote an absolutely wonderful blog entry all about the school and the restaurant where we had lunch with wonderful pictures. As I was carrying two bags and my daughter, I didn't take any pictures until we were inside, so please visit Carole's entry to see beautiful pictures of the CIA, stunning views of the frozen Hudson River, and pictures of the restaurant.

I was so thrilled to be meeting Carole for lunch because we have always had so much fun together, and also because I had been cooped up at home with sick children for weeks.

The last time we met for lunch, we were very health conscious and had Lean Cuisine frozen pizzas with Crystal Light and Weight Watchers ice cream bars for dessert. Yesterday, we did not think about one single calorie. It's a good thing too, because we probably would have needed a good accountant to figure out how many calories we consumed.

The goal of the day was to get out, relax, laugh, eat delicious food, enjoy ourselves, and revitalize. We chose the Apple Pie Bakery both because of the menu and because I could relax and not worry about my daughter making noise or a mess.

I'd been to the Apple Pie Bakery once before. Confronted with the delicacies, delights, and temptations, I ordered an egg white omelet and water. The Apple Pie Bakery really is the worst place to order an egg white omelet and water. There is a plethora of artisan breads, rich meals, and display cases full of artistically prepared desserts of every kind. You can see a slide show of the Apple Pie Bakery as well as the other items they offer here and the cafe menu is available here and the dessert menu is here. Take a look and see what you would order...you just might be taking a ride, sail, or flight over to Hyde Park within the next couple of minutes. Anyway, I wasn't about to make the same mistake twice and felt my arteries begin to harden just thinking about what to choose from the menus.

So as not to spoil Carole's surprise, I will end my post at this point as well and reveal what we had for lunch and dessert and how much fun we had in my next post. You will also get to see more relevant pictures, since the silly picture of the chandelier is the only picture I took (because I was laden with child and bags) that does not reveal what I am not yet ready to reveal.

To be continued...

"Dear John" by Nicholas Sparks: A Surprising Look at Autism

2010-02-02T23:15:00.007-05:00

"Dear John" by Nicholas Sparks - Courtesy Barnes & Noble Books

I just finished reading "Dear John" by Nicholas Sparks. I chose this particular book just because I like Sparks' books, even though they are usually heart wrenching. This book was no exception.

What I didn't expect, and what I didn't see in the book reviews or movie trailer is that it has two autistic characters. I don't want to give anything away, but a very large part of the story is the development and change of the relationship between two of the characters as one realizes the other is autistic and comes to understand and accept the character's behavior and why their relationship has remained so limited.

If you're interested in reading a synopsis of the book full of every possible spoiler, you can do so here.

It was really a beautiful story, but like so many of Sparks' books, doesn't have a happy ending.

I wonder if the movie is going to be true to the book or if it's going to cheat and end the way anyone who read the book would want the book to end. I wonder if they're going to portray autism as it was so beautifully portrayed in the book.

I know I won't be seeing it in the movies, so if anyone sees it, please let me know how it is!

My Daughter is Sick Now

2010-02-02T13:29:00.003-05:00

Ugh. My son is feeling better, and now my daughter is sick. She had a temperature of 102 the other day, and has been coughing, had a runny nose with terribly thick mucous, and has been generally miserable, poor thing. So, I will post as soon as I can. :)

Asthma Attack

2010-01-30T15:16:00.003-05:00

My son had his first asthma attack yesterday. We were reading Whinnie the Pooh and he started coughing. The coughing got worse and eventually, he couldn't breathe in anymore. It was scary. I was very grateful to God that we had the nebulizer and I gave him an extra treatment, and that helped. Today we went to the doctor and she added a second medication to his nebulizer treatments called Pulmicort in addition to the Xopenex he's already getting. This makes for a very long nebulizer treatment...almost a half hour of my son having to sit. So, we watch Chitty Chitty Bang Bang, but it's still a long time for him. Whatever is helpful.
So long as he can breathe!

Potty Training!

2010-01-29T15:03:00.004-05:00

Well, after four attempts, I have finally found a potty that interests my son. He is very excited about going pee pee on the potty! I have pull-up diapers, and I set a timer for ten minutes. Every ten minutes, he sits on the potty and I read a potty story. For the first time, he is actually sitting on the potty for more than a few seconds...a necessity for success.

We've been working on trying to get him to potty train for quite awhile. I didn't try very hard after his sister was born because frankly, I was too tired. So, I have lollipops at the ready for when there's pee pee in the potty, or at least for dessert. :) I keep telling him how proud I am of him and what a good job he's doing sitting on the potty!

My daughter is also interested in the potty and has practiced sitting on it with her clothes on. Maybe she'll be ready to train soon too. We'll see. She's only 15 months old.

I have a lot of patience, and I'll just keep encouraging them.

Nebulizer, Nebulizer, Rah, Rah, Rah!

2010-01-28T13:20:00.004-05:00

My son gets asthma whenever he gets a cold or cough, so we give him a nebulizer treatment three times a day. A nebulizer is a device that turns a liquid medication into a vapor so that it can be breathed in. My son won't let us put a mask over his face, so we just hold the nebulizer up to his nose and mouth, and it does the trick. In order to get him to sit (well, mostly), we put on a video. I love You Tube because they have videos of things we've been to that other people have filmed and saved on there. Today we watched one of the parades we saw while we were in Disney World over the summer. He loved it.

The only problem we had today was that he got into a fit of the giggles, which caused him to cough and wheeze uncontrollably and probably limited how much medication he was getting into his lungs. I let him pretend to fill up the nebulizer with an empty medicine vial, and for some reason saying, "Put the medicine in the nebulizer" really cracked him up something fierce today (maybe it's genetic...his father thinks the horrifying scene from The Silence of the Lambs where the kidnapper tells Catherine, "Put the lotion in the basket" is funny). My son's other favorite saying is, "Nebulizer, nebulizer, rah, rah, rah!". When it's done, I let him pretend with the nebulizer. He likes to do it himself and do it to his sister. So, I let them play for a few minutes before I put it away. Whatever helps the process.

Here's the video we watched today of the parade we saw over the summer at Disney. It's Move It, Shake It, Celebrate It. It was lots of fun. I love Disney.

Surprise Snowstorm!

2010-01-28T12:04:00.006-05:00

My son is feeling much better today. He was actually feeling pretty well yesterday, but I kept him home. I was going to send him in to school today, but the bus never came. We got a surprise snow storm that nobody predicted, and they didn't delay or close any schools until after 9 am.

My husband came home from trying to drive to work just a few minutes after he left because he slid into the intersection while pulling out of our complex...he thanked God for not letting any other cars be there, and then he turned around and came back home. So, I called the bus company and told them I was keeping my son home. Just a few minutes later we got a call from his bus driver saying that she was stuck behind several accidents and that's why she never made it to us. By that time, there still wasn't even a school delay. A friend of my husband's from work picked him up in her SUV. It took them almost 1/2 hour to go 7 minutes away, so they stopped for brunch. They eventually made it to work nearly two hours later.

My Daughter Took a Picture

2010-01-28T00:15:00.004-05:00

She had a little bit of help, but my daughter took this picture of our cat, Mickey, sleeping on my husband's shirt. She was very pleased with herself!

My Favorite Song Right Now - Magnificent

2010-01-27T00:01:00.005-05:00

My cousin thinks that live musical guests on talk shows are horrifically boring...not me! I wish I had seen this one!
This is my current favorite song. I love the music, I love the rhythm, I love the lyrics. I hope you enjoy it too.

Magnificent performed live by U2 on the David Letterman Show.

Magnificent
Oh, oh, magnificent

I was born, I was born
To be with you in this space and time
After that and ever after
I haven't had a clue only to break rhyme
This foolishness can leave a heart black and blue, oh, oh

Only love, only love can leave such a mark
But only love, only love can heal such a scar

I was born, I was born to sing for you
I didn't have a choice but to lift you up
And sing whatever song you wanted me to
I give you back my voice from the womb
My first cry, it was a joyful noise, oh, oh

Only love, only love can leave such a mark
But only love, only love can heal such a scar
Justified, till we die you and I will magnify, oh, oh
Magnificent, magnificent, oh, oh

Only love, only love can leave such a mark
But only love, only love unites our hearts
Justified, till we die you and I will magnify, oh, oh
Magnificent, magnificent, magnificent

© POLYGRAM INT. MUSIC PUBL. B.V.; UNIVERSAL MUSIC CORP.;

these lyrics are submitted by OarSmaN
these lyrics are last corrected by Katja Olsen

First Hug

2010-01-26T22:13:00.003-05:00

My son gave his first spontaneous hug today...of course it wasn't to me, it was to my husband, but it didn't make me any less happy!!!!!!

I got a hug after asking for one, but he's never just given a hug before. My husband was putting "Chitty Chitty Bang Bang" onto my son's little personal player because my son is not feeling well (again), and my son climbed up onto the chair where my husband was sitting, put his arms around him, put his head down on his shoulder, and gave a big squeeze. It was amazing.

Please never take a hug from your child for granted.

New Princess Chair

2010-01-25T22:26:00.001-05:00

My daughter loves her new princess chair. It's perfect for her, and she loves to sit in it and read. Here she's reading a riveting Target coupon book. I guess you can't start savvy shopping too young. :)

Never Get Behind ANY Wheel When You've Been Drinking

2010-01-24T21:46:00.006-05:00

There's a local radio commercial that absolutely gets under my skin. It's a lawyer talking about how ANYONE can get charged with DWI and that I should program her number into my phone right now because there are some things worth fighting for. Ugh.

NO, not anyone can get charged with DWI. You have to be driving while intoxicated in order to be charged with DWI. One of her examples is that one of her clients was charged after being pulled over for a license plate lamp that was out. So, therefore, it can happen to anyone. No, it can only happen to someone who is driving with their license plate lamp out and is driving after they've been drinking!

Anyway, my husband and I are not big drinkers at all. We have bottles of alcohol that we have literally had for years...some of them I think we've had more than ten years. When we do drink, we don't drink to get drunk. In fact, we try not to get drunk. Lately, we've been under a little more stress than usual, and last night we decided to break out a game and a bottle of wine that we've had for more than a year. It was a bottle of white zinfandel that was brought to a party last year in honor of my father who passed away in 2008 because it was one of his favorite drinks.

I drank more than my husband...I had three glasses and he had one. Three glasses of wine is more than enough to give me a serious case of the giggles...and since they were three eight ounce glasses, I really had five drinks. That would give most anyone the giggles.

We talked about that horrid lawyer, and I said that even though I was drunk, I knew I was drunk, and I wouldn't get behind the wheel. Then I thought I was just silly and I said I couldn't drive, but that I could certainly position myself behind a wheel. So my husband asked if I wanted to go behind the front wheel or the back wheel of the car. So I asked him if he'd be driving backward or forward. He said backward. So I said the front wheel. Well, wasn't I smart? Then I'd only get run over once, wouldn't I? And we laughed harder than we'd laughed in a very long time.

I think I've proven that one should never get behind ANY wheel when he or she has been drinking.

The Complete Tales of Winnie the Pooh

2010-01-21T22:48:00.012-05:00

This past weekend, my sister gave me a bag full of books that her boys had outgrown. In the bag of books was The Complete Tales of Winnie the Pooh. I had bought the book for her boys when they were very young and written their names inside the book. Except for the missing dustcover, the book is in pristine condition. I'm not sure if it was ever read, and it's a little sad to think that they didn't like it and wouldn't like to keep it for their children now that they are adults.

However, I absolutely love Winnie the Pooh, and I do not have the book, so I'm happy to have it. If you've never read the book, it would definitely be worth a look. I really enjoyed reading the history of the author and illustrator. I was also surprised to find that the reason why it is the complete Tales of Winnie the Pooh is because it is actually two books...Winnie the Pooh and The House at Pooh Corner.

I have been reading a chapter a night to my son since Tuesday. I wasn't sure if he would sit and actually listen as it's not really a picture book, and every chapter is seven or eight pages long, which is a long time for him to sit. So, I decided I didn't care if he sat to listen, and I just read as he ran around, knowing that just because he's moving doesn't mean he's not listening. My son is just about the same age as Christopher Robin, and I add that in all the time while I'm reading. It's such a wonderful experience.

He quieted down near the end of the chapter the first day, and then after that, he sat to listen to the chapters. When I finish a chapter, he asks for more Pooh. He loves Winnie the Pooh! I'm so pleased. I've never read the book myself, so it's something wonderful that we're sharing together. My daughter is not interested yet, but I'm sure she will be some day. She loves books like my son does.

After his bedtime story, he threw a tantrum complete with head banging because he could not get his Fisher Price Little People Bus to balance on the bar at the foot of his toddler bed. I told him we'd work on it in the morning because I couldn't figure out a solution just yet...I don't think I ever will. However, this answer at least stopped the tantrum. This happens all the time. He wants things that are unusual or impossible. I'm working on handling his tantrums better, and for today, I'm doing well. It's a tall order for me, but depending on how I look at it, it can either be frustrating, or amusing.

I suppose I can learn a lesson from the relationship between Christopher Robin and Pooh; it's best to smile and say, "Silly old bear."

Bowl Surfing

2010-01-21T15:13:00.003-05:00

Well, I've been trying to keep track of what has been causing my son to tantrum lately since his tantrums have been escalating. Last night he threw a major tantrum because he was trying to wear a cereal bowl as a shoe, and it wouldn't stay on his foot. I did not see his vision. I told him that it wasn't possible to wear a bowl on his foot because he's a growing boy and his foot is too big.

I hid the bowl to try to get the tantrum to stop.

Then my husband came home, and he saw the vision.

He pushed my son around with his feet in a bowl, and my son was so happy. He was laughing hysterically.

There is always more than one way to look at things. It can either be very frustrating to try to understand how someone else sees the world when you just don't get it, or you can just do your best to indulge their unusual ideas, sit back, and enjoy the ride.

It's difficult watching my son struggle with so many things. However, it is a blessing and a gift that he sees the world in such a different way. I get to see things I never, ever would have thought of otherwise.

Who knows? Maybe bowl surfing will be the next great sport, or maybe my son will invent something wonderful. He certainly has a very different way of looking at the world, and it's a terrific thing.

With Zenni Optical, it IS Possible to Get Quality Eyeglasses for a Low Cost!

2010-01-19T23:18:00.004-05:00

This is a paid post, but I give my honest review.

I have been lucky over the past few years to have vision insurance. However, there were a few years when I did not have any, and my husband and son both wear glasses. I can vouch for the fact that glasses are very expensive, and honestly, even with our vision insurance, we can still wind up paying a hundred dollars or more for special frames or lenses. I am glad that Zenni Optical has been brought to my attention.

Although I have not had any experiences with them yet, I would like to try them. I thought paying $100 instead of $300 for a pair of frames and lenses was a good deal...but through Zenni, a complete pair of glasses can cost as little as $8! If you have a toddler who wears glasses, like I do, you know that the glasses get broken and lost on a regular basis. Also, it's important to protect children's eyes from the sun, but I have not spent the money on sunglasses. Now I can! I can get sunglasses for my husband too, who can now keep a pair at home to use when we go out and a pair to keep exclusively in the car for driving.

There are a few drawbacks, as you might imagine, but I wouldn't expect there not to be for such inexpensive glasses. Of course, you can't try the glasses on first. The glasses are produced in China, so it takes quite awhile for them to come in the mail. As a mother, because of the reputation of products from China, I would also perform a lead test on the frames before putting them on my son, but that is cheap and easy to do.

All in all, in this economy, or for anyone looking to save some money, I think this company is well worth a try.

Check it out for yourself at http://www.zennioptical.com/ or here eyeglasses.

Here is a link for a review by someone who has used the service for eight years -and has written what seems to be a fair review with pros and cons. http://www.examiner.com/x-28795-Brooklyn-Liberal-Examiner~y2009m11d13-Cheap-eyeglasses-are-a-reality-Check-out-Erics-review-of-Zenni-Optical.

Myself Belt Giveaway at Autism Learning Felt

2010-01-19T16:39:00.004-05:00

When I went to visit a blog I enjoy called Autism Learning Felt, I saw a giveaway for a great product called the Myself Belt...It's a belt that kids who have poor dexterity can open and close...themselves! This would be great for my son with PDD-NOS because he has dyspraxia, which makes planning any muscular movements extremely difficult and is the main reason why he speaks and eats very little and can't ride a tricycle, hop, or blow out his birthday candles. Also, because he can't eat, he's very skinny, and he needs a belt. Some pants have adjustable waistbands, which are nice, but not all pants do, and it would be nice to have a belt he could operate to give him some more confidence and independence.

They even have belts with guitars on them...my son would love that!!!!!

Please check out this giveaway here.

My Daughter Needs Cat Detox

2010-01-19T08:20:00.003-05:00

Minnie is a very patient cat.

Adults with Autism

2010-01-17T23:58:00.005-05:00

This is a long post because I've been trying to learn about autism from people who have grown up with it, and it's brought up a lot of thoughts.

I got a mix of wonderful and insightful personal experiences and information mixed with "celebrate neurodiversity". I was fascinated but a bit put off by the concept of celebrating neurodiversity. It's a fine idea, but when there's a safety issue, my son is pleading for me to help him but can't tell me what's wrong, and he's hitting his head hard into the wall or the floor or my head or someone else's head, I must admit I don't feel much like celebrating.

I have been off the blogging circuit for some time spending most of my time caring for my kids and home and celebrating the holidays with family and friends. I didn't have any set day to start blogging again. Then I got a comment on my blog from an adult with autism, and it was so fascinating to me to get a glimpse into how my son experiences the world not from "experts", people who have done research, education advocates, therapists, etc...people who so far have been unable to give me much useful information at all, but from someone who has grown up looking at the world through a similar pair of eyes.

I started looking into other adult voices on the web and found some very interesting videos on You Tube by adults with autism.

My main goal is to understand my son so that I can help him as much as possible, and so that I can understand what he is trying to communicate to me as much as possible. Life is hard enough. He has so many extra challenges that make life even harder.

After viewing various videos on You Tube and reading http://www.rethinkingautism.com/, I gather that, according to some adults with autism's points of view, they do not want to be cured, they do not want to be viewed as a puzzle piece, they do not want to be molded into the form of everyone else in society. They do not appreciate the Autism Speaks movement because of its focus on biomedical research to detect Autism before birth (I suppose so that you can decide whether or not you want the child), and to develop treatments and cures for Autism.

There are apparently no persons with Autism (or Autistics, as they refer to themselves) involved in Autism Speaks. Autism is a part of who they are, and not something that needs to be fixed. They want to celebrate neurodiversity.

As an audiologist, I spent a lot of time learning about Deaf culture, and it is somewhat reminiscent of this argument...they don't want cochlear implants because they view them as an attempt to eradicate Deaf culture, as well as other medical research and treatments. Of course there is no black and white.

My opinion is that to me, my son is a puzzle because I don't understand why he reacts to things the way he does. If he wasn't hurting himself, and me, and others, it might not be such a big deal, but he is. He can't speak. He can't eat. He has trouble learning expressive language no matter what form it is, spoken, sign, or picture, so he has a brain full of thoughts that he can't convey to me no matter how hard he tries. He screams and cries to me in hysterics, "Mamma help!", but can't tell me what he needs help with. If there were some cure for these things to make his life easier, I would love it. I would imagine he would too. It's scary making decisions for a young person, never knowing if you're making the right decisions. Especially when you can't get their input, no matter how much you may want to.

I think EVERY DAY about how what I do will affect him later on in life and hope he doesn't hate me for the decisions I've made and for all the times I've lost my patience and said things I shouldn't have or raised my voice. I always apologize for this, every time it happens because it is wrong for me to yell or say things that are mean, and I can never expect respect from him if I don't show respect myself. But I hate myself every time I fall again into a lack of patience.

I know he can be destructive, loud, and even violent, and fear visiting other people's homes because something may very well be broken, someone may be hit or kicked, or who knows what else might happen. I feel guilty because I don't want to have someone get hurt or have something of theirs broken. The fact is, although I am proud of my son and love him more than words can say, I can not blame someone else for not wanting someone or something to be hurt or damaged. This is also an issue living in an apartment where many other people can hear everything that goes on, and the maintenance company keeps tabs on everything that needs to be repaired and replaced.

I have been blessed by loving and understanding family and friends who take these things in stride and know that my son is not being "bad" and has no malicious intent. I have not had such good experiences everywhere.

I only want the best for my son, and to show him all the love I possibly can.

Head Banging

2010-01-17T11:14:00.002-05:00

Since October, my son has missed more than two weeks of school. This added to the holiday vacation days adds up to being home nearly one out of three months. I'm always concerned about regression, but he did not show any signs of regression, even after missing so much school. I was very happy about that.

He has had various viruses, all involving the GI tract. Since he is so underweight, this is always concerning, because he was unable to eat, and we couldn't even get him to drink. Many times we had to force Pedialyte into his mouth with a syringe so that he wouldn't need to be hospitalized for dehydration. He couldn't tell me when he was going to vomit, so I just held him with a towel most of the time. He had a horrible diaper rash from constantly having so much liquid against his skin in his diaper that he developed open sores. I changed his diaper constantly, but it didn't help. We eventually put layers of cloth diapers inside his diaper and mixed hydrocortisone cream, lanolin, and zinc oxide and slathered it all over his bottom. This helped very quickly, and finally, his tummy troubles ended and he healed. It was horrible for him.

Also during this time, he developed the habit of head banging. He did it every once in awhile, but after being sick for so long, every time he is frustrated, or has to do something he doesn't want to do, he bangs his head hard into the wall or floor repeatedly. He bangs his head hard enough to leave a mark. We don't know if it's sensory seeking or attention seeking, so we're trying to find some sort of a balance. We've tried putting on a helmet, but I'm afraid to leave him alone with it on for fear he'll somehow manage to strangle himself with the strap around his neck. I've tried to put down a pillow for him to hit his head against, but I guess he doesn't get the feedback he wants because he keeps moving to another place. I'm trying to get him to call me and ask for help instead of banging his head, but he can't always express what he needs help with, and this is frustrating for both of us. I don't want to encourage tantrums, but I know that he's frustrated because he has more to communicate with me than he can through speech or sign language or pictures.
We are planning to move this summer to get into a better school district for when he starts kindergarten. One of the things I have heard about this district is that they're quick to pay for alternative communication devices for children, which my son needs. He can not talk very well at all, he hasn't been able to pick up much sign language, and he hasn't had much success with picture exchange communication either. He can only communicate the most basic things. So, he's nearly five, and I'm sure he has a lot to say that he simply can't. If we could use some other means of communication, I know that would help a lot. Alternative communication devices are extremely expensive, and our current school district has not approved any for my son. So, we're hopeful that we'll have a better experience and more help in a better school district.
We've heard from parents of children with special needs as well as various therapists and social workers that this is the best school district in the county for special needs children, and so that's where we're going to go. I hate to move, we'll be further away from family, we'll be in a more country setting and further away from amenities, but who cares if my son will get the services he needs.

Hopefully we can find a way to get him to stop hurting himself.

Back!

2010-01-17T10:31:00.015-05:00

It's hard to go down a snowy slide... My daughter enjoyed opening gifts, but my son was too busy playing his guitar...

The stockings were hung...

The presents were under the tree...three for each child, just like baby Jesus...

My son playing his guitar later on looking all handsome in his shirt and tie...

Our New Year's Eve decorations...

Happy New Year!Celebrating with party hats and balloons...

My son yesterday wearing a very nice hat, which I'm very sorry to say, he somehow later destroyed...

Here are some pictures to catch you up on what we've been up to.

Thank you to everyone who kept dropping cards, posting comments, and reading my blog while I was on hiatus. Both kids have a cold right now, but that's normal in our home. It's nice to be back to some sort of normalcy.

Thanks again!

Sorry for Not Posting

2009-12-26T18:27:00.001-05:00

My son has had one virus on top of another with just a few days in between, and I've been consumed with taking care of him and still trying to get everything else done that needs to be done. So, I hope he'll be feeling better soon so that I can get back to blogging.

Winter Wonderland

2009-12-05T22:57:00.006-05:00

Adventskalender

2009-12-04T20:58:00.010-05:00

The Adventskalender I made for my son

This is what's inside all those packages...except for the scissors and tape, of course. ;)

These are the Adventskalenders my cousin made for her daughter (on top) and her husband made for her (on bottom). Since her husband travels so much, she made one for him with their pictures behind 24 little windows she made in the paper.

This is the Adventskalender my aunt made for my other cousin before she hung the gifts on.

Here it is with the gifts on.

Advent, for those who may not know, is the four weeks prior to Christmas during which Christians spiritually prepare for the coming of Jesus. It's also a time for counting down and waiting and anticipating. While I was growing up, my Grandmother (who was originally from Germany) used to get me Advent Calendars. They were pictures with little doors all over them. Each little door had a number from 1-24 or 1-25. I'd open a door each day to find a little picture and bible quote, and I did this every day until Christmas Day.

I recently was emailing my cousin and Aunt in Germany, and we were talking about Advent Calendars, and they were describing how they made Advent Calendars (Adventskalender in German) for their children and grandchildren. I thought it was so interesting and asked how they made them, and they described them to me.

They have a little trinket that they wrap and number and tie onto something. My cousin uses a garland as well as a piece of cloth with loops sewn onto it. Onto each loop a package is attached. there are 24 loops. My Aunt made these for my cousins when they were children, and still makes them for them. She surprised her son by hanging it in his house while he was out so that he could find it when he came home.

I thought that was such a nice custom, and I decided that we would start the same custom. So, I went to the Christmas Tree Shop, which I call the $2 instead of the $1 store because their things are slightly nicer and only slightly more expensive. I bought 24 gifts, the most expensive one costing $2. I also got a little garland to tie the gifts to. I wrapped the gifts, numbered the gifts, and put them onto the garland. It looked so nice. Then I had to figure out where to hang it. So, I found a blank wall and put up two nails to support the thing, and swagged the Adventskalander over the nails.

I was hoping my son would understand and like it. I put it up while he was at school, and told him when he got home that I had a surprise for him. I brought him over to see, and he looked and said, "Oooooooooo". I was so happy!

And he seems to understand that we can only open one gift every day, and he looks forward to it.
First we have dinner at the table, then I light a candle on the Advent Wreath and read a portion of the Christmas story from the Bible, then we sing happy birthday to baby Jesus, then we (well, I really) blow out the candle, and THEN it's time to open the day's gift.

The first day I got him gel clings that he had a lot of fun putting on the window and then ripping to pieces. The second day he devoured a candy cane. The third day he got a harmonica that I hope (along with blowing out the candles) will help him to learn to blow since he can't do that yet. Today he got a little froggy that lights up when you touch the two prongs on its bottom or when you put it into water. When he opened the present (which he did mostly by himself, which is a completely new skill), he said, "Ooooo a frog!" I could hardly believe it! This is wonderful stuff!

So we sang Five Green and Speckled Frogs and then dinnertime was over.

It was a nice night, and a nice new tradition.

Happy Advent!

A New Pediatric Dentist

2009-12-03T15:48:00.006-05:00

This is a picture from another pediatric dentist in Omaha, NE, Dr. Dan Streeby. This is the position our new pediatric dentist used with my son, and I thought it was wonderful.

We went to a new pediatric dentist today. Our previous pediatric dentist I did not like. Although my son is chronologically 4 and a half, developmentally, he is about 18 months old. When we last went to the dentist about six months ago, the dentist said that my son was a big boy and should come into the room by himself. This made me very nervous, firstly because I know how afraid my son is when we go to medical professionals, and secondly because I don't trust anyone, and my son can't tell me if anyone does something inappropriate to him. So, I followed them and stood diligently outside the door peeking through the little window. The dentist played with my son, having him shoot water out the window with the water shooting instrument, supposedly to have him become more comfortable. However, when the time came, after an hour or so, for my son to sit in the chair and have his teeth examined (this is the real reason we came, after all), of course, my son would not sit. The dentist tried yelling at my son to get him to sit (which of course did nothing but upset my son), and I went into the room and held him on my lap so that he could have his teeth examined and cleaned. I wish this is what we had done in the first place. The dentist explained that he wanted him to become comfortable being there, and that I should bring him in every month for a similar session. He wanted me to pay $85 per month to have my son shoot water out the window...sort of a dental therapy. I can tell you that no matter how much time he plays with the water squirter, he will be no more willing or liable to sit in that dentist chair. I decided to never go back. I will not give the name of the dentist because although he is not the right dentist for us, that doesn't mean he's necessarily a bad dentist.

I looked online at some autism sites where parents wrote about their experiences with pediatric dentists, and found a post written by a mother raving about another dentist. So, I thought I would give her a try. Her name is Anna Simonis, DDS, and she is located in Mount Kisco, NY. She was wonderful. She did something I'd never seen before. In order to examine my son, she had me sit sideways in the dentist's chair with my son on my lap, facing me. Dr. Simonis sat opposite me in the chair, and laid a pillow on her lap. So, while I was still holding my son, we gently laid his head back onto her lap, and in that manner, she examined and cleaned his teeth. He was very upset and afraid, but I sang to him, and so did Dr. Simonis. Her singing instantly calmed him. Within ten or fifteen minutes, we were done, my son had shining white teeth, not one, but FOUR Thomas the Tank Engine stickers, a new toothbrush, new toothpaste, flossers, and he didn't seem any worse for wear. I was very happy.

I will be going back. She was very gentle yet firm and got done what needed to be done without fear. So, if you have a special needs child, or any child for that matter, and you're looking for a good pediatric dentist, I would highly recommend her.

Gingerbread Men

2009-12-02T08:40:00.008-05:00

All ready to bake complete with step stool for my son
Rolling out the dough

My daughter takes a turn making a gingerbread lady because my son has zero interest in making cookies

I finally get my son to make one cookie
The cookie in the middle is my son's Picasso-style gingerbread man cookie

Yesterday, we had planned on baking gingerbread men and decorating the tree. I had been talking to my son about it, and he seemed very excited. He just loves gingerbread men. He doesn't eat, so he doesn't eat them, but he likes to look at them, and he likes to make them out of Play-do. So, I thought he would be very excited.
Well, things don't always go as planned. I had everything all ready to go when he came home from school yesterday, but yesterday turned out to be a tantrum day. I don't know if he wasn't feeling well, if he was just tired, or if it's just part of his condition, but he was a very naughty boy yesterday, and it was a pretty miserable day.
We still managed to make one cookie together though. He made one and my daughter made one. His came out like a Picasso gingerbread man because he tore it apart and threw it onto the cookie sheet. Being positive, I look at this as being creative. :) He had no interest in doing any more and did not want to decorate. My daughter had fun for about 10 seconds, and then she was done too.
I put them down for naps, but my son was just as naughty when he woke up and threw tantrums and pushed his sister over most of the night. We eventually went out and he was well behaved then, but as soon as we got home, he was ornery again. So, it was bedtime. I finished the cookies, and we'll try decorating the tree again today.

Cutting Down Our First Christmas Tree

2009-12-01T08:32:00.013-05:00

We have always wanted to cut down our own Christmas tree, but we just never did it. Then when my son came along, we didn't want to bring a baby along, and then he had so many health and behavioral issues that we were afraid to get a real tree. This year, we decided to go for it.
While driving to the Dutchess County Fair, we passed a huge Christmas Tree farm, and my son became very excited yelling, "Wima Pwee! Wima Pwee!" This to the trained ear translates to, "Christmas trees! Christmas trees!" I promised him we would cut down our own tree this year, and so we did.

Having moved upstate from the "city" (everyone upstate considers any of the boroughs and even Long Island to be "the city", and folks who live in the boroughs and LI consider Manhattan to be the city), we have tried very hard to listen to all advice from folks about living in the northern country so that we are not "cidiots" (idiots from the city who think anything involving mother nature is simple because they're savvy and worldly).

So, I looked to my cousin for advice knowing that she and my other cousin and uncle have been cutting down trees for years. She posted a wonderful post full of advice for those who have never cut down a tree before, which you can read here. She also directed me to a nearby farm where we wouldn't have to worry too much about the possible pitfalls of u-cut trees.

Our trip was very successful. It did involve tantrums, but most things do, so we might as well listen to a tantrum while cutting down a tree and starting a family tradition.

The farm was beautiful, with different types of trees and sizes of trees all mixed together. They did have one section that was completely devoted to baby trees, and they were so cute. The rows were straight, there were no big holes, and the ground was very level. This made it possible to put the kids in the double stroller so that we would be able to cut down the tree without having to worry about the kids' safety. We figured we didn't want to be too picky with two small children in tow, but we really didn't have to be. There were so many beautiful trees, I don't think we could have gone wrong. So we chose a tree that was an appropriate size, and my husband got out the bow saw that we had borrowed from my cousin. He sawed while I pulled the tree away from him. In a very short time, the tree was down, and my husband carried it over to the baler. The baler is a device that compacts the branches and wraps the tree in a netting to make it easier to transport and put up. The man who baled the tree then carried the tree to our car and tied it to the roof rack. This all took less than 20 minutes. We spent the rest of the time at the farm visiting the horse, sheep, bunnies, chickens, and alpaca, and looking for a nice wreath for the front door.

Then we came home and my husband put the tree into the tree stand and we gave it some nice warm water to help keep the sap from solidifying so the tree would be able to drink as much as possible to stay fresh as long as possible. It's a beautiful tree, it smells lovely, and my son is so excited.

He just loves having a tree in the house, and I put the lights on yesterday while he was at school to surprise him when he came home. He came through the door to the sound of Christmas music and the vision of a tree full of lights. He was in awe. That made me very happy.

Tonight we'll be making gingerbread men and decorating the tree. I'm looking forward to it!

Farewell Little Red Car on Volkswagon Rock

2009-11-27T00:22:00.007-05:00

Here is a very blurry enlargement of the only picture I have of the car... This is the original picture...you can see the car up in the right hand corner of the picture.

For as long as I can remember, whenever I rode upstate with my family to visit my extended family, part of the fun would be to look for the red car painted on a rock on I-84. Into my adulthood I had continued to enjoy looking for that little car, as has my family. We all had our own little trick to remember where it was. My husband had since fallen in love with the little car too. I always wanted to take a picture of it because I thought it was so cute, but it's really not in a convenient spot to pull over. I tried taking a picture while I was driving, but it didn't come out very well, as you can see. It had even been repainted when the paint had become faded.

Then one day, I was horrified to find that it was gone. Someone painted over it with gray paint. It was a little work of art. The rock it was painted on was shaped like a little VW Bug. It was perfect.

I hope that whoever painted that little car will paint it again!!!!!

Here is something I found online that has a little unofficial history of the car...

Yet Another Virus

2009-11-24T23:42:00.002-05:00

Oh, my poor son somehow contracted yet another virus. I was very concerned because by Sunday, he was feeling much worse. He's had around a 101 degree fever ever since Sunday. I've called the doctor several times for fear that there was some sort of infection, but they insist that what he has is viral. At least the vomiting stopped, thank God. But every day is a long day. And another thing about adenoid surgery...they write on the paperwork that there will likely be a peculiar odor coming from the mouth, and not to be alarmed. What they don't tell you is that it's not peculiar, it's nauseating.
I hope he will be feeling alright by Thanksgiving. If not, we'll have a small turkey dinner at home.
Poor kid.

What Were They Thinking?????

2009-11-22T22:47:00.003-05:00

This is an 8 oz. bottle of hand soap next to a large bottle of Tylneol with Codeine prescribed for my four year old son...it has 360 doses in it. What were they thinking????? They must have misread the doctor's handwriting...I'm sure that's easy to do. But wouldn't you question 360 doses of a controlled substance for a four year old?????

Anyway, he was feeling so great the first couple of days after his surgery, and now he's feeling really miserable. The swelling in the back of his nose/throat area is bad, and his breathing always sounds like a snore. His fever spiked up to 101.5, and he hasn't been able to hold down anything all day. I was very concerned about him becoming dehydrated. It seemed like he'd take one sip of water, and a gallon of water and dried blood would come back up. Just awful. It was very scary to him, poor thing. He can't talk, so he can't tell me that he's not feeling well...he just comes over to me looking for snuggles, and then all of a sudden, I, the chair, and all the laundry I just folded are very wet. And back into the washer they go. LOL

So, I wound up running out to a 24 hour pharmacy for a medicine to help with the nausea, and that seemed to work. He was able to drink some of his formula and keep that down. He was lethargic and clingy, which is very unlike him, even when he's sick...so I know he's really not feeling well, poor little guy.

I hope he's feeling better tomorrow and that today was as bad as it will get.

Dark Chocolate Benefits During Pregnancy!

2009-11-21T21:52:00.008-05:00

dark chocolate for pregnancy

Intentional Chocolate has some great news about the benefits of dark chocolate during pregnancy! It turns out that eating five or more servings per week of dark chocolate has been found to be incredibly beneficial for pregnant women! This awesome news comes from Elizabeth Triche and her colleagues from Yale University. They studied 2291 pregnant women who gave birth between 1996 and 2000. They researched the connection between how much chocolate the pregnant women ate in their first and second trimesters and the levels of theobromine, a telltale component of chocolate in the umbilical cord blood of their babies. They found that those who ate the most chocolate were at a 70 percent less risk of experiencing preeclampsia. These findings were published in the journal, Epidemiology, and you can read the abstract of the article here.

Well! I wish someone had included me in a study of the benefits of dark chocolate during pregnancy, and I wish I had known about Intentional Chocolate before today!

Intentional Chocolate is a really cool company. They give back 50% of their profits to worthy causes. They have a secret ingredient they put in their chocolate...intention. They actually have experienced meditators, some of whom trained with the Dalai Lama, meditate over the chocolate to instill good intention in the chocolate. Intentional Chocolate even conducted a double blind study that showed that eating Intentional Chocolate elevates mood, energy, and overall sense of well being. And, their chocolates and gift baskets are beautiful and thoughtfully prepared.

So, stock up for yourself! Send a beautiful gift basket for Christmas, to improve the health and well being of someone who's expecting, or to anyone who could use a thought, a prayer, or a blessing in the form of chocolate!

Thoughts Too Short for a Whole Blog Post

2009-11-21T00:06:00.006-05:00

My husband and I played Senet tonight...it's an ancient Egyptian board game just for two. You can read about it here.

I am so sick of strapless bridal gowns...I'm tired of watching, "Say Yes to the Dress" because all the dresses are starting to look the same.

I hate the commercials for Jared jewelry stores...Oh, he went to Jared...yes, he definitely went to Jared...just for those stupid commercials, I will not be going to Jared.

I also hate commercials where they show people doing ridiculous things to convince you that you need a certain product. Oh no! You cut yourself again (commercial shows a woman hacking at her legs with a razor). You need a hair-be-gone safe-t-raze. Puleez.

I'm also tired of Vampires...First Blood, Twilight, Vampire Diaries...yawn.

I'm also tired of anti-Christian shows on television. Family Guy is one of the worst. I'm sick, sick, sick of our Godless society. Holiday Tree at the White House indeed.

I currently have my Facebook language set to English (pirate)...it's very silly. :)

Dairy Queen has some really dysfunctional advertising..."When I'm sad, I get a Blizzard. When I'm happy, I get two." "I sneak out and get a Blizzard when my husband and kids are asleep." "My wife doesn't know I get a Blizzard on every bike ride." I love Blizzards, but that's just weird.

My Son's Surgery Went Well!

2009-11-19T22:28:00.007-05:00

Maria Fareri Children's Hospital

This is a longish post because I go into detail about what it was like for me to go through a surgical procedure with my child. So, if you ever wondered what it's like or what's involved, I'll try to describe waiting, how to explain surgery to a very young child, a very good thing to ask the anesthesiologist, separation anxiety, what it's like to watch a child go under anesthesia, what it's like to leave the OR without your child, and what it's like to watch a child come out of anesthesia.

Last night I had a terrible time trying to relax, thinking about my son's surgery today. Since I knew that my son wasn't going to be allowed to eat or drink anything from after midnight this morning until one o'clock this afternoon, I wanted him to stay up as late as possible and eat as late as possible. A new TGIF was opened nearby, so we went there for dinner. I had a Cosmopolitan, which helped me to relax a little. Mostly we just enjoyed each other's company.
I know that adenoid surgery is a very simple, routine surgery, but it is the anesthesia that always makes me nervous. Partly because something can always go wrong, even during routine surgery on a healthy child, and party because it's difficult to watch my son going through the process of anesthesia.

My son's surgery was scheduled for one this afternoon, and we had to be at the children's hospital by 11 am. When we got there, we had to register at admitting. I was very surprised and pleased at how easy this was. The doctor's office did a wonderful job of making sure that the hospital had all of our information, and all I had to do was show our insurance card and sign one paper. That was it. My son received his hospital bracelet. We have to register every time he needs any sort of blood work or x-rays at the hospital we go to in order to monitor his growth hormone levels and other endocrine system levels, so he has worn many hospital bracelets. For some reason, he loves having them on his ankle. Today was no exception. Although he couldn't say anything, he helpfully stuck out his leg so that the office person could put on his "anklet".

Then we waited and waited and waited in the ambulatory surgery waiting room. I'm very happy I brought a lot of toys for my son and daughter because there was not one single toy in the waiting room. I guess it's to prevent the spread of germs, but I still thought it was odd that there were no toys in the waiting room of a children's hospital. But, we were set anyway because I came prepared.

We were finally called in, and my son's vitals were taken. He likes the word thermometer, and we sing-say the word to get his temp taken. Then we call the blood pressure cuff a huggy balloon, and he allows them to use the balloon to hug his arm. Then they used the heart telephone to listen to his lub-dub beating heart. And then we waited some more.

It's important to me that I explain everything to my son before it happens, and I am always honest about what will or will not hurt so that he will trust me.

After a short time, we were called back into the recovery room to set up for surgery. First we met with the ENT doctor who explained the surgery to us again. Then the anesthesiologist came to discuss the anesthesia process with us. I requested that she dispense medication to my son prior to going into the OR to calm him down and cause amnesia for the event. She agreed. If you ever need to bring your child in for a surgical procedure, request that this medicine be dispensed to your child. It's extremely calming.

While we were waiting for the medicine, we got into our special pajamas. Mine was a jumpsuit. I was grateful once again that I lost weight because otherwise I wouldn't have fit into it. I dressed my son in a tiny hospital gown.

I told him the story again about how we're going to go into the room with the doctor where he's going to lay down and have a mask put on his face (we practiced with my hand). It will have cool air blowing like his nebulizer, and he'll feel very sleepy and take a very special nap. When he wakes up, Mommy will be there and he'll have a boo boo in his throat. This is the story I'd been telling him for the past two days.

Then he received his happy medicine. Very quickly he became very relaxed. He was waving to the nurses and saying hi, and we peeked through the door to Daddy, Grandma, and Baby Sister before it was time to go to the OR. My son became very fearful when we went into the OR...who wouldn't? Even though I've observed several surgeries and had two surgeries myself, it's still an overly bright room with a lot of unfamiliar people and things in it.

On the operating table was a child-shaped pillow filled with warm air for him to lay on. Instead of being comforting, this scared my son. The anesthesiologist said she was ready to administer the anesthesia, and I had to hold my son down in order for her to put the mask over his nose and mouth. As has happened on the prior two occasions he received this type of anesthesia (the first time they put in an IV...that was even more horrid. Usually they don't administer the IV until after the child is asleep, like here), he had a look of terror and horror on his face like he was being suffocated. He screamed and cried and thrashed about. I did the usual. I held him down very firmly while singing Elmo's Song to him. As he relaxed a little, I was able to stroke his hair and cheek. He continued to cry. It was heartbreaking. After what seemed like forever, he finally went under. This is good of course, but it is also horrible because he looked dead. This bothers me every single time.

And then it's time to leave my baby with all these people who are going to cut him and put tubes down this throat. I know they are helping him, but I still feel guilty for putting him through it. I kiss his sweet mouth, tell him how much I love him, and I leave, shaking and holding back tears. As I walk out the door, I turn to the surgeon and tell him to take good care of my baby.

I remove and discard my jumpsuit. The nurse gives me a beeper so that I can leave the waiting room and eat lunch, knowing that the second my son is out of surgery, I will be beeped. I join my husband and mother. We eat lunch, and we hardly finish eating when the beeper goes off only 40 minutes later. I leave my husband and mother to clean everything and take care of my daughter and rush to my son's side.

He's tiny on a huge hospital gurney. He has an oxygen mask over his face. It dwarfs his tiny features. He sleeps soundly. I am so happy to be reunited with my son, and I pull a chair close to his bedside and wait for him to stir. It takes some time, but he finally opens his eyes and sees his Mommy. He begins to cry. He thrashes. I climb into bed with him and hold him and rub him and sing to him. He tries to rip out his IV. I gently restrain him. When he calms down a little, I request that the nurse get his Daddy. My husband brings in our laptop computer with "Sing, Hoot, and Howl" playing on it. This is one of my son's favorite videos. It's a compilation of Sesame Street songs about animals. This calms him down a bit, but he still wants the IV out. We're supposed to get him to drink some water or take some ice pop before the IV is removed, but he won't. The nurse is very kind, and she removes the IV after an hour or so, and allows us to go out to the waiting room so that my son is among his toys and sister and grandmother and parents. He calms down much more, but we still can't get him to drink. I eventually use a syringe to squirt some water into his mouth. He becomes very upset. I tell the nurse I think his throat hurts too much, and she gives him some codeine. After a half hour or so, he drinks some water from a cup, and shortly afterwards, we're released. Almost as soon as we get into the car, he's absolutely fine and drinks an entire bottle of formula and a bottle of water. We stop on the way home to pick up his prescriptions, and by the time we get home, you'd never suspect that he'd done anything out of the ordinary that day, never mind have surgery...amazing.

So, he's sleeping soundly after having a normal, nice evening at home, and I'm very relieved that this ordeal is over.

Adenoid Surgery Tomorrow

2009-11-18T17:57:00.003-05:00

Adenoid diagram copied from here.

My son is having his adenoids out tomorrow and getting tubes put into his ear drums. I'm sure it will be fine, but of course, I'm nervous. I'm always concerned about the anaesthesia. This will be my son's second surgery this year. Poor kid. The last surgery went really well, and I hope this one does too. I set my cell phone alarm to go off during the night so that I give him his pain meds throughout the night so he doesn't wake in pain. I did this for the first two nights with the last operation...I see how his pain is during the day to gauge when to stop getting up through the night. This operation may be more painful...I really don't know. I hope not. I hope he'll do fine, and I'll be very happy to have it all over with.

The most difficult thing is that I don't know what he does and doesn't understand. I tell it like a very simple story...Mommy and Daddy are going to be home when you get up tomorrow. You're going to get to take a ride in Daddy's car with your pajamas on. We'll be driving to the hospital. Grandma will be there waiting for us! We'll wait our turn, and then the nurse will call us in and you and Mommy will dress in special pajamas. Then you're going to take a special nap. The doctor will put a mask over your face, and it will feel like your nebulizer. It will make you very sleepy. Mommy will be with you the entire time. When you wake up from your special nap, Mommy will be there. You're going to have a boo-boo in your nose and mouth. Mommy is going to give you medicine and hold you all day to make you feel better.

Storytelling usually works well with my son when I'm trying to prepare him for a new experience, so hopefully, it will work this time too. I never know how much he understands, but he seems to understand a lot, so I assume that he's getting it all.

I went to the dentist today because I thought I needed to have a cavity filled, but I just have a sensitive tooth. Hurray!

My ex brother in law had a very serious surgery yesterday, and he came through well, and I'm very grateful for that too. So, hopefully, my son's surgery will be thing number three that goes well.
Please say a prayer!

My First Acorn Squash

2009-11-17T23:43:00.009-05:00

Acorn Squash Acorn Squash cut and prepared a-la-Paula Deen

Acorn Squash look like flowers when they're cut in half...so pretty!

Baked acorn squash...delicious!

Tonight I cooked and ate my first acorn squash, and I must report that I and my husband both thought it was delicious!

The squash really did look like an acorn before I cut it, and then like flowers after it was cut in half. I got a recipe from Paula Deen (who manages to make a vegetable 9 points), and wound up only using about half the ingredients...the recipe calls for cutting a squash in half, scooping out the seeds, and then brushing the halves with 2 tbs. softened butter mixed with 2 tbs. brown sugar, and 2 tbs. maple syrup. So, we each had 4.5 points of vitamin A, but the squash was so lovely that I think it would have been delicious with less or no sugar.

Our fridge is chock full of vitamin A...we have sweet potatoes, butternut squash, carrots, and we had the acorn squash too...November should be good vision month! :)

God Bless Poor Little Shaniya Davis

2009-11-17T16:12:00.004-05:00

I am heartbroken over the story in the news about beautiful little five year old Shaniya Davis. She is only slightly older than my son, and her mother sold her into prostitution. The last video of her from a surveillance camera shows a man carrying her in his arms...and then she was apparently killed shortly afterwards and dumped like trash on the side of the road. Why? I don't understand how or why anyone could do such a thing to a child...to anyone, but especially a child. I hope she is resting in the Lord's arms now, and I hope He can take away the pain and terror she endured at the end of her tragically short life. Rest in peace little angel.

Tuesday Weigh-In

2009-11-17T15:59:00.003-05:00

I'm down .6 this week. Yahoo! I know that doesn't sound like much, but anything down is good!

What I'm Eating for Lunch These Days

2009-11-16T12:02:00.007-05:00

Well, not every day, but most days, this is what I eat for lunch. Two cups of mixed greens, 12 sun dried tomatoes, 1/2 cup of garbanzo beans, four tablespoons of lite vinaigrette, and 20 oz. of Crystal Lite fruit punch. It's quick, it's easy, it's huge, it's filling, it's beautiful, it's nutrient dense, and it's delicious. AND it's only 5 1/2 points for the whole thing. It also provides 5 servings of vegetables , a serving of protein, and 2 1/2 glasses of water. Not bad.

Also, I keep forgetting to post my weekly weigh-in. Last week I lost 1.2 lbs. I had gained almost 10 pounds of weight I had lost over the summer, and this brings me just 3.8 lbs. away from where I was. So, I'm down 36 lbs. since I had my daughter. Not bad. Not as good as it was, but not bad. Also, I have a new scale that is accurate, so I never had lost quite as much weight as I thought I had (as I was going by my home scale and the Weight Watchers scale), but it will come.

I went to my Stroller Strides class again today. I had gotten to the point where I wasn't so terribly sore after classes, and then I had to miss some classes because I was sick and had trouble breathing, and then my son was sick, my daughter was sick, and now I've missed three classes and have to start again. Last time I went to class I aggravated my epicondylitis in my left elbow (that's tennis elbow, ha ha...I don't remember how I got it initially...not by playing tennis, that's for sure, but this time I did too many wall push-ups), and my right knee, which has bursitis (swelling), usually hurts. So, today, I took it a little easy and didn't jump or use the resistance bands because my elbow was bothering me a lot today. I figure it's better to make it through the class without injuring myself so that I can keep going. The class still kicked my behind anyway. It's hard to go back after not going, and the other women in the class are in fabulous shape, but everyone is very nice, and maybe I can inspire someone else walking through the mall who thinks they can't keep up...I just keep going.

My son inspires me a lot...he has to work hard to do everything, he has a lot of trouble keeping up with everyone, but he just keeps going...so, so do I.

A Day Out with Thomas at Essex, CT

2009-11-11T12:18:00.012-05:00

My daughter had a FABULOUS time playing with the balloons.

Here comes Thomas puffing down the track! My son looking out the window during the train ride.

My son and daughter driving a fire engine from a local fire company near Essex, CT.

My son watching a model train set up at the museum.

My daughter playing at one of the several train tables that were set up in the museum.

Sunday afternoon the weather was absolutely gorgeous (nearly 70 and sunny), we got itchy to do something outside as a family, and we decided we'd go to the Mystic Marine Life Aquarium. The last time we went there, it was our tenth wedding anniversary. I took an adorable video of my son and the beluga whales they have there. The tank is built above ground so that you can watch the whales through the glass, and it looks like they're swimming right past you. My son kept running to try to catch the whales. They were swimming in circles, so they came around on a regular basis, so we told our son to call the whales and they would come. So he would say, "Whale! Whale!", the whale would come, and he'd run after it until it swam around the tank past where he could run. It was adorable. And.......I taped over it! So, we thought maybe we'd try to recreate the experience.

As we were driving, we passed the Essex Steam Train Museum, and I thought I remembered Thomas the Tank Engine was supposed to be in town around this time. We had done this over the summer in Massachusetts, and it was great. You can read about that here.

So, we decided to drive past and see if he was there...and there was Thomas! So, instead of the aquarium, we spent a day out with Thomas. Both my son and my daughter absolutely love Thomas. For the entrance fee, you get a half hour train ride (the train, of course, is pulled by Thomas), kiddie rides, musical entertainment, stories, tattoos, and photo ops with Sir Topham Hat and Thomas. The weather was perfect, and we had a great time being outside with the kids all day. The train ride was beautiful, and both kids were well worn out by the end of the day.

Breakthrough!

2009-11-06T15:17:00.003-05:00

Well, we've finally had a breakthrough. I hope it lasts. As you may know if you read my blog, my son has an obsession with hitting me in the head and saying, "boing". I've been trying to get him to be gentle for months and months. FINALLY, yesterday he did it. And if he starts up with the boing thing, I tell him, "Remember, gentle", and he strokes my hair instead of hitting me in the head. Awesome! I am so thrilled I'd do a cartwheel if I could do one...I've never been able to do one, though, except for the time I accidentally did one while in the process of falling down the stairs and breaking my collar bone when I was 7...don't try that at home, by the way.
Anyway, I am so happy and so pleased and so proud of my son. Patience, consistency, patience, patience, and more patience. Go Boo!

Electronic Experiments, Take Two

2009-11-04T21:38:00.004-05:00

My husband bought another electronic experiment set for our son. This one records and plays back sound, and it can also be programmed to play a sound when it detects rain or light or sound or some other disturbance. It's pretty cool. Right now it's set up to modulate the recorded voice so that it sounds either too high or too low, depending upon which way you turn the modulator. It's time consuming, but fun. Our son was only slightly interested in it tonight. He's still very hyper. Really, if he's not strapped into his Special Tomato Height Right Chair, he isn't able to focus on much, and he wasn't tonight.

I could have used this electronic experiment lab before I took my hearing aids class, which was basically an electronics class. There were many classes in audiology I never expected to take like physics and electronics, but they were interesting and fun. Thank goodness my husband was a missile technician in the Navy and had electronics books and was able to help me with my hearing aids class. Without him, I would have been lost.

Without him, I'd be lost even when I'm not taking an electronics class. :)

The Date Night That Wasn't

2009-11-04T11:29:00.000-05:00

Well, we were supposed to go out on a date last Friday. Our next door neighbors graciously offered to watch the kids for a few hours while we went out to dinner.
However, both kids were sniffling, and my son started coughing that morning, so I didn't want to get their baby sick. So, we cancelled, even though my neighbors said they'd still watch the kids. I just couldn't let them in good conscience.
However, I tried to keep a positive outlook, and I figured, why don't we all go out to dinner? We've taken the kids to nice restaurants before with success, and so we didn't give much thought to not going.
We brought with us the usual arsenal of quiet books and toys for the kids to occupy themselves with. I made sure that my son was seated in a highchair with a seat belt because the pressure on his lap usually helps to calm him.
However, Friday night continued to proceed as unplanned.
My son was extra hyper active, and despite all our efforts, he continued to scream and bang on the table. No matter what book or toy we gave him, he threw it on the floor. He banged the silverware on the table. We took everything away. We tried to ignore him. We tried to redirect him. We tried to distract him. We tried to discipline him. I eventually removed him from the table and took him to a quiet corner near the entrance and the bar area. I sat him on my lap and proceded to talk to him very quietly, trying to calm him. I gave him deep pressure input by squeezing him and pressing firmly down on his shoulders. I did joint compression exercises where I pushed his joints together in quick pulses of ten counts for each finger, each wrist, each elbow, each shoulder, ankles, knees, and hips. He seemed better.
So, we returned to the table, and he started to scream again, and while I was trying to tell him to be quiet, my daughter managed to pull my bread plate onto the floor, where it very noisily shattered.
By this time, we were ready to leave, and the owner of the restaurant came over to talk to us.
I was so humilated that I heard very little. He sounded something like the adults do in Peanut's cartoons. I just knew we were being thrown out of the restaurant.
I was horribly upset, and packed everything up very quickly, feeling every eye on me. I don't know how often it's true, but I often feel as if everyone is looking at me and thinking what a HORRIBLE mother I am because I can not control my son. And it's true, I can not control my son. My son looks perfectly normal, so I'm sure that most people naturally assume that he is a brat and do not realize that he's autistic. Of course, if someone just wants to eat in peace and quiet, it doesn't matter.
It is so difficult knowing that I am being judged all the time, and sometimes it gets to me. Friday, it got to me. Later I talked to my husband, and he had a very different experience. He said the owner just asked us if we could please get the children to be more quiet because two tables had complained to him. He said he really didn't care what anyone thought because our son is autistic, and there simply isn't anything we can do about it.
Our son's behavior is completely unpredictable. One minute he can be a precious lamb, and the next, a holy terror. We never know. But, we probably won't be going to a nice restaurant again for a very long time, and I don't know if I'd ever go back to this one out of sheer humiliation.
Anyway, we wound up going to a local pizzaria and eating in the car. Then we took the kids to the most boring Halloween party ever. The only saving grace was that my neighbors were there. Otherwise, we wouldn't have stayed as long as we did. All in all, the night was a horrible dud, and the best thing we did was go to sleep.

This wasn't marketed as a sled, but...

2009-11-03T22:59:00.005-05:00

But my son has a great imagination when it comes to using his toys for purposes the manufacturers could never have imagined. Thank God there are no stairs in our home.

Tonight was one of those nights. My son was sent home sick from school yet again, and I'm sick. So, my patience is not all it could be, and oh boy, was my son an imp today.

As an aside, my daughter is teething, and she still nurses, so she teethes on me, which is VERY painful! She also likes to pinch me, which I am trying to stop. As you may know from reading previous posts, my son has an obsession with hitting me continuously in the head and saying, "boing". So tonight, I was being simultaneously hit, pinched, and bitten, despite my best attempts to stop this behavior, and I lost it. So, I did what I always do when I lose it. My daughter went in her crib, my son went in his room, and I went out on the terrace and closed the sliding glass door and breathed.

That wasn't the end though. My daughter is pretty easy and was absolutely traumatized by being separated from me, so the biting and pinching stopped. However, my son's behavior only elevated. He eventually started hauling his driving toy up onto the couch and then sledding off onto the floor. I was pretty sure he was going to kill himself, and so back into his room he went. As I've written before, ignoring my son's bad behavior does not help one bit. By this time, I was expecting his father home any moment, thank goodness.

My husband came home, and because he is a wonderful husband, he took care of the kids while I cooked dinner and did a Jumble puzzle to remove myself from the situation. After dinner, we went for a drive because I had to get out. We went out for ice cream and we voted. That helped tremendously. By the time we came home, it was time for the kids to go to bed.

I hope tomorrow is a better day.

He was supposed to be taking a nap...

2009-11-02T22:35:00.002-05:00

A common behavior in children with autism is destructive behavior. My son has been known to break the slats on the blinds in his room and tear apart the strings that hold them together (so we never close the blinds anymore), tear the pages of books to shreds, put holes into toy boxes, break toys, take his dresser apart, take the humidifier apart, take his lamp apart, break the CD player I put in his room because he likes music, and just generally pulling out everything from every shelf and drawer. This includes my kitchen drawers for which we have yet to find a locking mechanism that will fit or a gate that he is unable to climb. He has a tendency to swipe things from my kitchen drawers and cabinets and hide them under his bed or under the crib.

I have tried everything to get him to stop. I have changed the environment, I have punished him, I have made him clean up his messes, I have had him throw his favorite things that he destroyed away in the garbage, you name it. I've tried every suggestion from the professionals. And still, the behavior continues. It's just a matter of patience, time, patience, consistency, patience, and patience.

This behavior makes it impossible for me to keep up with cleaning our apartment. I used to get very frustrated and angry, and I still sometimes do, but sometimes I have to stop and appreciate the sheer scale of it all.

Today, instead of taking a nap, he tore his room apart. I became suspicious when there was a particularly loud sound coming from the room. When I went in to take a look at what was going on besides napping, I was rather stunned to see the extent of mess in my son's room. It was truly astounding. I had to get the camera so I could show my husband when he came home, and so I could share it with you all here.

Although he didn't pull the drawers out of the dresser and empty them, I still think this is pretty impressive...and I'm quite sure that given time, he would have done so. Besides his toys all pulled out from under the bed and crib (I used to have them in a toy box, but he broke the toy box), he got the mattress off the bed, disassembled the guard to keep him from rolling out of bed, took apart the humidifier (there's a green round thing on the floor, and that's the water receptacle), emptied out his hamper (there's a towel and a pair of pajamas peeking out from under the mattress), my colander that he secretly swiped from my kitchen cabinet is on the floor next to the rocking chair, my barbecue tongs are on the floor all the way on the lower right hand corner, half of the bumper is torn off the crib, and there are toys in the slats of the bed...the only one visible is his Little People airplane balanced over one of the slats.

So, he had to help me clean it...I keep thinking that maybe if he hates having to pick everything up again he won't make the mess, but no such luck yet. Then I gave him my well practiced look of death and said he wouldn't like it if I heard another sound and had to come back in.

He took a nap after that. It must have been a good look.

Trick or Treating Parade!

2009-11-01T22:23:00.005-05:00

These are just pictures from ads, but this was my son's costume...He was James, a friend of Thomas the Tank Engine and this was my daughter's pink unicorn costume.

Our front door

Every year for the past three years, we've been going to a local Halloween Parade for children. It's organized by our Fire Department, and the community participates. The fire department closes off the local streets, and folks on the roads where the parade goes through decorate to the nines and get dressed up in costumes to give out treats to the kids in the parade. It's great.

This year, the weather was misty, but warm. There were a LOT of children participating! Everyone seemed to have a wonderful time. I know we did.

This is the first year my son actually participated in Trick or Treat. Every other year, he melted into a tantrum at the first house. Last year he was at least interested in the fire engines so we could finish the parade. However, this year, he had a wonderful, wonderful time.

The parade started by the fire house, and there are fire trucks at the beginning and the end of the parade. The children stopped by each house along the way, and get their treats. One house was all spookily decorated with tombstones and webs and spiders and fog. Another house gave out whole Nestle bars. Our favorite house was guarded by Pinkbeard, the Pirate. He invited us to share in his treasure. He admired my daughter's costume because it was his favorite color, pink.

At the end of the parade, the firemen gave out doughnuts and apple cider. It really was a lot of fun.

Before we went to the parade, we went trick or treating in our building, and my son had fun knocking on the door and saying Trick or Treat...or "buh oh bee" and thank you. He did terrific. My daughter enjoyed it too. Both kids ate several lollipops, and my daughter also had a doughnut, some cider, and a Tootsie Roll. They were both literally bouncing by the end of the night. I was so happy we finally had our first "normal" Halloween.

The only disappointing thing was that we only had two trick or treaters. That was so sad. For decorations, we had our jack-o-lanters lit up outside on our terrace, and we had a beautiful group of pumpkins and a lovely apple that my son made at school. We also had a big, black, hairy spider that would go down on its web whenever there was a noise. I also had lots of stickers and tattoos to give out. Now I still have a bunch of stickers and tattoos...

How was everyone else's Halloween?

Medical Procedures

2009-10-30T12:54:00.002-04:00

My son did FABULOUSLY well this morning getting his blood work done. I don't tell him very far beforehand what's going on, but I always tell him exactly what is going to happen shortly beforehand. I am always honest, and I never say that something won't hurt if it will. Blood work is "one quick pinch". I also always sing "Elmo's Song". So, he can trust me. I never, ever try to fool him. He's been through a lot of medical procedures and has been under general anaesthesia several times. He's had IV's, endoscopy (a tube with a camera that looks in the tummy and intestine), laryngoscopy (a tube with a camera that goes up the nose and down the back of the throat), an MRI, surgery, a five hour grueling growth hormone level test, innumerable blood samples taken, and I'm not even sure what else. So, we've been through a bit. I know there are kids who have to go through a lot more, and I'm grateful that this is all we'll have to do.
He's having another surgery in November to get his adenoids (lumps of lymph tissue above the tonsils in the back of the throat) out and have tubes put in his ear drums. In November, he has another neurologist appointment, a dentist appointment (I have to make one myself), has to more blood work done for his surgery, has an endocrinologist appointment, and Thanksgiving!
Busy month. And as I've mentioned before, specialists usually only have hours during the day during the week, so it's much easier for me not to work so I can take him to all his appointments.
Oh great. I'm just looking at my calendar, and I have 5:15 pm written on Tuesday, November 24...and that's it. I have no idea where I'm supposed to be at 5:15 pm. That's not good!

Mr. Bump

2009-10-29T21:42:00.003-04:00

I went to my first support group at my son's school today, and I got some really great news and some really great suggestions.

The psychologist at his school said that he does not display any aggressive behavior at school at all. This leads him to believe that this behavior will stop. He suggested that I redirect my son when he tries to play "boing" with my head (he hits me in the head repeatedly and says, "boing!"), hits, slaps, kicks, etc. I told him that I have plum run out of ideas of things to try to redirect him. Another lady in the group said that when she had a similar problem with her grandson, they began to use Mr. Bump. Mr. Bump goes everywhere. Whenever her grandson feels the need for any physical aggression, he takes it out on Mr. Bump.
I tried to buy Mr. Bump today at Walmart, but he wasn't there. So, I'm going to try again tomorrow at Target.

I hope, I hope, I hope, that this works. Wish me luck.

Hi Mama!

2009-10-28T10:45:00.002-04:00

Every day when my son gets off the school bus, I say hello, and I ask him how his day at school was. He is busy looking at the light on the steps of the bus, and the lever used to open and close the doors. While we're walking into our building and up the stairs, I ask him about his day...did he have music? Did he read a story today? Did he have arts and crafts? Did he play outside today? I give him time to answer, but he never does.
It's disheartening. He doesn't say hello or goodbye unless I cue him to.
This morning, I was talking to the bus driver and matron, and I said, "One day when he comes home, he'll say, 'Hi Mama". And my son said, "Hi Mama." It was very cute. But I know that he was just repeating what I said, since the right thing to say would have been bye bye, as I was getting off the bus and he was on his way to school. It was cute, though.
I hope that one day he will say hello and goodbye and I love you without just repeating. I hope.
And I hope he'll be potty trained and start to eat. Nearly five years of washing bottle parts and changing diapers is a long time. He can't help it. He gets lots of therapy for eating, and we're working on potty training. Sometimes he still urinates when we're changing him for the tub, and is surprised that something is coming out...there's just no awareness.
Well, time, patience, and love...time, patience and love.

Unconventional Date

2009-10-26T16:32:00.005-04:00

I've written before that there's an 85% divorce rate among parents of autistic children. It is for us to get a babysitter. I don't trust anyone I don't know, and my son can't tell me if anything bad happens.

I've also written that I have the best next door neighbors in the world, and this Friday, they're going to be watching our kids so that we can go out to dinner at a restaurant where children are not allowed. I am very excited.

However, in addition to this special outing, we make efforts to spend time alone together...even if we're not really alone.

Saturday night, it was pouring. So, we decided to go to the Danbury Mall. Usually when we go here, we take the kids on the merry go round, the choo choo train, let them play in the big play area, and let them go on all the little rides. Saturday, we stuck them in the carriages, and ignored them most of the evening. We each got one Godiva chocolate and fed them to each other. We strolled around the mall taking turns giving back rubs. We walked through Eastern Mountain Sports looking at kayaks and snowshoes, and through Williams & Sonoma at very expensive cutting utensils and expensive, unnecessary, cute acorn-shaped soup terrines. We stole kisses in the elevator.

Then we brought the kids on the choo choo and let them run around a little. My son charmed the train engineer, and the engineer gave him a free ride with Daddy. He was very nice. We tried to treat him to coffee or something, but he was just happy that our son was happy. How nice!

It's Important to Be Flexible

2009-10-20T23:17:00.003-04:00

No, not like Elastigirl...

When you have a kid on the Autism spectrum, you have to be flexible about your expectations when you go somewhere.

Tonight we went to the Spooky Halloween Craft Night at our apartment complex. I was hoping my son might enjoy making some crafts. He usually likes to paint and cut and glue. However, tonight he wanted nothing more than to run around, or "wun awow" as he says. The clincher was that someone had brought two push toys, and my son just loves push toys. Then he found a remote control that he used as a phone. So, that is what we did.
I did do some painting with my daughter who was "all done" very quickly, and as she pulled her hand away from the project, she wound up hitting herself in the forehead with her paintbrush. We were painting the body of a spider, so she had a nice, big, black splotch over her left eye. It was very funny.

We didn't finish painting her spider because she was also excited about the push toys, especially since she's starting to walk all by herself. So, that is what we did. We didn't complete any crafts, but we all had a good time, and that's what counts.