Sunday, November 30, 2008

It's Holiday Time!

Every year we start our Christmas decorating the weekend after Thanksgiving. First thing yesterday morning, Michael wanted to put up the tree and go see the winter lights. We explained that we had to clean up the house first, and then start decorating. And before any of that, we had to go to his Craniosacral appointment. He spent most of the appointment explaining that our house is a mess and he had to help clean up before we would put up the Christmas tree. Of course, he had a huge temper tantrum on the way home, so we didn't get as much accomplished yesterday as we had hoped.

Today, we did manage to get the decorations out and the tree up. Steve is still working on the lights, though. My personal goal is to be able to put up the ornaments with Michael tomorrow after school. I have never seen Michael so excited about Christmas. He found a gingerbread man ornament and has been running around the house saying "Run, run as fast as you can. You can't catch me, I'm the Gingerbread Man!" He's absolutely adorable!

There is a huge Winter Lights Festival that we take Michael to every year. He loves going and would go every day if only we let him (and we could afford it). Normally it starts the Friday after Thanksgiving. This year, it doesn't start until next Friday. They did have 'preview days' this weekend, but it would be impossible to explain that they were open for two days, and then closed the rest of the week. So, we now have next Friday circled on the calendar and Michael is counting down the days. If anyone from the Festival reads this, please reconsider a season pass?

It really is wonderful to see Michael so excited about Christmas. What's even better is that he doesn't care about presents at all. He just loves the decorations, the snow globes, and spending time with relatives he doesn't get to see that often. After reading about people getting trampled on Black Friday, just spending a little time with him makes me remember all the real joy of the holidays!

Saturday, November 29, 2008

Getting more cynical...

I read this post today and just am having a harder and harder time believing that anyone at the CDC/FDA/AAP/etc actually cares about kids at all, let alone keeping them healthy. How do they sleep at night?

Thursday, November 27, 2008

Happy Thanksgiving!!!

Yes, It's GFCFSFEF. (Except for the fondant decorations, which we just took off for Michael)

Wednesday, November 26, 2008

Mommy Temper Tantrum

I wanted to throw a temper tantrum at work the other day. A project was dumped on me with little warning, and I had no idea how to complete it. Being given a huge list of requirements without the technical knowledge to complete the project was very upsetting. My boss happened to be out on vacation, so I had no immediate support. Yes, throwing something seemed like a great idea at the time.

The next morning I really didn't want to go into the office. I hadn't slept well, and my stomach was in a knot. I had no idea how I was going to pull this project off, but knew that I didn't have any choice. I was not in a good mood.

As I drove into work I realized that I was going through what Michael faces almost daily. His teacher occasionally sends home classwork that he doesn't manage to complete in school for him to do at home. Sometimes, it's pretty easy to see where he gets lost and needs help getting started, sometimes it's not so obvious. But, I can imagine him sitting down with a new activity and just being scared and overwhelmed.

I am going to try and take the lessons I learned from my project at work and see if I can help Michael map out a strategy for dealing with project anxiety. As I calmed down and tried to approach the project step by step, things got easier and much less scary. I would love to see him develop the skills to take things slowly, one at a time. I certainly don't want to condone having a temper tantrum in school, but this week, I'm a little more understanding!

Monday, November 24, 2008

What a weekend!

Michael was sick for a good part of the weekend, so there isn't a lot of news there. But, at one point he was talking with Uncle Dan and told him - "It's getting cold outside .... Uncle Allen and Cousin Jenny and Cousin Johnathan will come to visit soon." I was totally blown away when I heard this.

Steve's extended family comes to visit twice a year - once over the summer (around their Mom's birthday), and once around Christmas. I know that Michael doesn't pay much attention to Christmas, but I didn't realize that he paid so much attention to when people came to visit. I thought it was so cool, considering he hasn't had all that many Christmases to come up with such a great generalization.

I know that I mention the Age of Autism site a lot, but it's one of my favorites. I would ask you to please read this article about Gulf War Syndrome. It really makes some great connections and makes you think about all the things we aren't being told.

Friday, November 21, 2008

Asperger's Programs in Public Schools

The county I live in is supposed to be have one of the best Public School systems in the country. However, when it comes to providing a consistent, appropriate education for children with high functioning autism / Asperger's syndrome, they are failing miserably. There was a Special Education Advisory Committee meeting last night where the main topic was whether or not an Asperger's program was needed at the high school level. I don't understand how there can be any question.

I was blown away when the Director of Special Education Services said that there wasn't enough demand for the program. We all know that autism rates are going through the roof all over the country. Our county is no different. What is different is that even though there are very successful Asperger's programs available for both Elementary and Middle Schools, very few people know they exist, and the IEP meetings seem designed to keep kids out of these programs.

I was also shocked with the complacency regarding student failure. I don't understand why a student has to fail multiple times in their current placement before anyone would consider finding one that work better.

The easy explanation is that every child on the autism spectrum is different, with widely different challenges and support needs. While this is true, I believe that an educational team (teachers, paraeducators, and therapists) that is trained in working with children with autism has the highest chance of success. Trained professionals working with children who all have a similar disability can make a huge impact. This is clearly demonstrated in the few programs designed for children on the high end of the spectrum. Those parents who have children in an existing Asperger's program were generally happy with the education their children are getting, and were worried what would happen to their children when they reached high school. To simply give up on providing a consistent educational experience because it is difficult is beyond irresponsible.

When Michael was evaluated for his official disability code, the school psychologist told us she was on the fence between a diagnosis of High Functioning Autism and Asperger's Syndrome. She told us that there wasn't much difference between the two diagnoses, and that it wouldn't affect his coding/educational opportunities. Apparently, she was wrong. Because she decided to go with the autism diagnosis, the school wouldn't even discuss the possibility of Michael going into the Asperger's program. So, he's stuck in a learning center that is designed for students with many different diagnoses, where most students are not able to keep up with the standard curriculum.

Even though Michael is extremely bright, he is essentially failing this year. When he finished Kindergarten, he was reading at a level 11. At the end of the first quarter this year, he is reading at a level 10. Going backwards is not a good thing. Additionally, his report card states that he has 'minimal understanding' for every topic under Writing and Language. He has gone from 'complete understanding' in 75% of the Math categories in Kindergarten to 50% of the first grade. Again, going backwards.

When we discussed his lack of progress at the parent-teacher conference, his teacher indicated that Michael's behavior is getting in the way of obtaining information from him. He has trouble getting the words to answer questions and is easily overwhelmed, especially in writing assignments. Even though she has tried to implement strategies and accommodations from his IEP, results have been sporadic at best. She was going to ask for an autism consult to see if an autism expert could help. We haven't heard anything back yet.

I am very frustrated because I know that Michael can produce the information needed to pass his evaluations. When I sit with him to do his homework, he can do it. If I know that the main focus of the assignment is reading comprehension, I offer to scribe for him. Last night, he read a poem followed by three questions. When I asked him to tell me the answers, rather than to try to write them, I got the correct answers almost immediately. Yes, he has huge focus issues, but he can do the work; he does understand what he reads.

I don't want to be overly harsh to his teacher and the paraeducator. They are doing the best they can with the resources available. They are both extremely caring professionals who obvious like Michael and want him to succeed. The problem is that he has complex needs, and is not in an appropriate setting to address those needs.

So, where do we go from here? I honestly don't know what the options are, and what steps are in his best interests. We will probably look into getting private testing done to see what his best educational diagnosis is, but that is expensive and money is extremely tight at the moment. Anyone have good advice? If so, please leave a comment!

Wednesday, November 19, 2008

Good day so far!

OK, today is definitely a good day. Never mind that it's only 9am. When my alarm went off, Michael came bouncing in to see if it was time to go downstairs yet. I told him I needed to get my shower, and then we could go downstairs. He said, "OK, I'll play while you take a shower." No fussing, no impatience, just sitting at the top of the stairs reading a book. Definitely a good start.

When I got out of the bathroom, Steve was out of bed and he and Michael had already gone downstairs. I try to let Steve sleep in since he is usually up working until 2 or 3am. But, today he realized I was a zombie getting out of bed and that Michael was trying so hard to be patient, so he got up and got the day started. By the time I got downstairs, Michael had already had all his capsules and his breakfast was ready. I got a huge "Good Morning, Mommy!" when I walked in the kitchen. What more could I ask for? Oh yeah, Steve had a cup of coffee waiting on my desk. Have I told you how much I love my husband?

I got Michael dressed and signed on to work. No work crises, and still a happy kid. Michael asked nicely if he could watch Nemo while I worked. He ate breakfast and watched Nemo. He still takes a lot of prompting to remember to eat, but at least I don't have to physically put the fork in his mouth (much).

At drop off, I got a great hug and a kiss, and a "good-bye Mommy". He's only been using our names for a week or so, and it makes me smile every time. So, now I am home and ready for a busy work day, but I couldn't be happier. Definitely a good day.

Monday, November 17, 2008

Bad Mommy, Happy Mommy!

I feel like the worst mother in the world, but I am also incredibly happy. The last couple weeks have been really rough for Michael. He's been emotionally fragile, aggressive, distant, weepy, you name it. The worst part was, we had no idea what started it all – until Friday. After another terrible day at school, Steve finally made the connection that all the behavior started a few days after we switched one of Michael's supplements from a clear liquid to a bright orange tablet. Yes, we should have known better. Of course we should have realized that the tablet had food coloring that Michael can't tolerate. We were so caught up in the allergy information, we totally missed the food coloring.

Saturday morning we switched him over to a 100% hypoallergenic capsule. We started seeing slow behavior improvements. Today, we have our sweet kid back. His teachers even commented on how hard he was trying to have good behavior at school! So, I feel like the crummiest mother possible for missing something that affected him so badly, and should have been so obvious. But, I am just grinning from ear to ear about having him 'back'!

I've been taking a food safety class in the evenings this month, so I haven't had as much time with Michael as I'd like. After hearing what went on while I was in school tonight, I want to drop the class and just be home more. But, I only have 2 classes left, so I think I can manage.

On the way home from his social skills group, Michael told Steve that he wanted to make cupcakes. In the past, he might help with one ingredient and pouring the batter. Tonight, Michael participated in every step: finding the recipe, gathering/measuring the ingredients, mixing the batter, and pouring it into the paper cups. He also supervised when Steve put the cupcakes in the oven, tested them, and took them out to cool. He was so proud of himself, and couldn't wait to taste his creation. When I came home tonight, he eagerly told me about making the cupcakes with Daddy and that they were 'delicious treats'. I couldn't be more proud!

The other amazing thing tonight was that he got a paper cut. Normally, he would get really upset over being hurt, but not let anyone do anything to help. Most times, he couldn't even express what had happened. Tonight he was sounding upset, so Steve asked what was wrong. He answered, "I have a paper cut." When Steve asked if he could see it, Michael said "No, I need a bandaid." Then, actually let Steve put a bandaid on. He wouldn't let Steve wash it, but didn't need to know that he had snuck some Neosporin onto the bandaid.

He was a little grumpy when it was finally time for bed, but I think he was just worn out from such a long, eventful day. I am so glad to have my Michael back. And I promised him I would be much more careful with any changes to his supplements!

Sunday, November 16, 2008

Steve and I went to the WrightsLaw Parent Bootcamp over the weekend. I am still overwhelmed at the amount of information presented in such a short period of time, but came away with a few key concepts that I wanted to share.

As parents of special needs children, we are in a marriage with the local school system, with no possibility of divorce. We need to make sure that we treat that relationship respectfully, and work collaboratively with the school to make sure that our children get the education to which they are entitled.

It is vital to maintain complete and accurate records of our child's progress. We spent a great deal of time in class learning to read standardized test scores and understanding the bell curve. Once you understand how to compare data over time, you have an objective measure of your child's progress. Charts and graphs can be powerful tools to show progress and regression.

There are specific criteria you can use to evaluate IEP Goals. I had heard the term SMART goals before, and it applies perfectly to an IEP. SMART stands for specific, measurable, action words, realistic, and time sensitive. We will definitely be reviewing Michael's IEP to see where the goals can be smarter!

There are a ton of resources available to help parents become the best advocates possible for their children. Some of the ones I want to remember are:

WrightsLaw main website
Council of Parent Attorneys and Advocates
IDEA 2004 Statute and Regulations
Education Resources Information Center

I'll probably add a new section of Special Education links to keep these current, and add more as I find them.

Saturday, November 15, 2008

Another David Kirby Article

If there is anyone who still doesn't believe there is a link between genetic vulnerabilties, vaccination, and autism, please read this article by David Kirby. It talks about the rate of autism in Somali immigrants in Minnesota and is truly scary.

Thursday, November 13, 2008

Flight Risk Realized

Michael ran away from school today - he actually made it outside the building. His class was in line after PE, and the teacher was bending down to help another student with his jacket. As soon as she was distracted, Michel walked away. Someone happened to be walking in the front door of the school, and out he went. If someone else didn't see him walk out the door, they wouldn't have started looking for him outside. They did catch him fairly quickly, but it could have been a lot worse. I am so thankful that Michael has such a great guardian angel.

This isn't the first time he has wandered at school – it's actually the third. Every time he seems to get further. I have looked into a program called Project Lifesaver, which would allow the police to find him quickly if he wandered far enough that he couldn't be found. But, I am nervous about that, too. The key to the program is attaching a GPS device with radio and cellular frequencies to his wrist or ankle. I have heard many times that we are supposed to limit his exposure to electronics, and this would be attached to him 24/7.

Does anyone have any experience with this? Any advice for me? I'm pretty much at wits end right now and not at all sure what to think.

Crazy days

What a crazy week. I seriously overscheduled this week, and now I'm paying for it. Plus, Steve and I are both dealing with a cold or allergies giving us a nasty cough and sore throat combination. Luckily, Michael is fine. It could be that the bug giving him asthma problems last week just finally found it's way to us.

We got Michael's report card yesterday, and he's actually doing pretty well academically. The only big problem is getting information out of him, verbally or in writing. Even when he knows the material, he just has a hard time pulling the answer out of his head in a way someone else can understand. Definitely something to work on.

Michael's behavior at school has been really terrible lately. To the point that his teacher wants to ask for an autism consult for behavior. It sounds scary, but it really just means she's going to ask an autism 'expert' from the county autism program to observe Michael and give some advice as to how to help him deal better in the classroom. He is just so afraid of everything that he would rather tantrum than attempt some of the activities - even activities that he's good at. We quickly gave permission for the consult, so hopefully it can happen soon.

Steve and I are going to go to a WrightsLaw Parent bootcamp tomorrow and Saturday to learn more about special education law. I am so excited, since they have such a great reputation. Even though we haven't had any problems with getting Michael the services and accommodations he needs, it can never hurt to have information.

Time to get back to today's challenges and hoping for calm.

Tuesday, November 11, 2008

Minor Social Awareness

As Michael and Steve were driving away from the school yesterday, several people were standing outside the door to a nearby house. Michael said "They are visiting them." Steve thought it was really great that Michael was noticing what was going on and telling him about it, and getting the pronouns correct. But what I really liked was that he was talking about a social event. He could have talked about where the people were, or how many, but he chose to say they were visiting. I know it seems so small, but it is an awareness of social intent he's never shown before.

The other wonderful thing from yesterday was absolute bliss. Michael woke up before we did, and amused himself. He read some books, played in the hallway, even came in our room to use the bathroom. Never once did he try to wake me up. When my alarm went off, he started cleaning up the toys he had dragged into the hallway and then came over to talk to me. I was truly amazed. I don't know if it will ever be repeated, but it was definitely a good morning!

Sunday, November 9, 2008

Free Domino Game, Today Only

I wanted to let anyone who reads this know about the GiveAway of the Day website. Every day they give away a computer program for free. On most weekends, they give away a game. This is how we've gotten most of our computer games. They don't give out the newest or slickest games, but the ones we have gotten are generally fun. They try to have a good variety, which means that not all games are appropriate for children, but some are. Always prescreen before letting your child play!

Today's game is Buku Dominoes. I was surprised at how quickly Michael picked up the game. The game automatically highlights all the pieces you can play, which makes it a lot easier for him. I was impressed that he was able to scan the play field and find where he could use the highlighted tiles. Scanning lots of information has always been difficult for him, so this game makes me really happy.

Saturday, November 8, 2008

Side trip into our 'other' life

This is completely aside from the normal autism blog stuff. Many of you know that Steve and his friends are a bit spacey. I mean, they do space stuff. Last weekend they submitted an entry in a contest put on by the Space Frontier Foundation. If you'd like to see another part of our world, you can read more about the contest, or see the video they submitted. I think it's pretty cool, but then again, I'm in love.

Amazing, scattered day

What an amazing day! Michael has always had very scattered skills – today he had an amazingly scattered day. He was completely connected and 'with us' all day. More so than he's ever been. I'm going to write about a few of the wonderful things he did today. Just imagine mini-tantrums sprinkled liberally throughout. It's almost as if his brain is making connections so quickly he needs to literally blow off steam. It's absolutely astonishing to watch, from a safe distance!

Michael spends a lot of time with Uncle Dan on the weekends. He likes to go between floors and people, from one activity to another. At one point, Dan was teaching him to throw underhand. When Michael made a catch, Dan told him "Nice catch". Michael's immediate response: "Nice throw". It's hard to express why this is so cool. He doesn't have much social language, and the concept of a reciprocal conversation is so hard for him, but this just came out naturally.

After dinner, Michael asked for a treat. He doesn't normally ask for food, but it's something he's been working on. I told him I had a new treat, and asked him to wait a minute while I got it ready. Steve had gotten a bag of cinnamon granola from Whole Foods, and I was anxious to try it. I was not sure at all if Michael would eat it, since it was very crunchy and had a very strong cinnamon flavor. He tried it quickly, and even asked us to refill his plate! I was shocked.

At another point in the day, Michael and Dan were out playing in the sand box on our deck. The wind was blowing and leaves were falling from the trees. Michael made the connection that every time there was a strong gust of wind, he could look at the trees to see a huge flurry of falling leaves. I don't remember exactly what he said, but he clearly enjoyed the cause and effect.

I'm not sure where all these changes are coming from. We've pretty much been keeping up with the protocols we started this summer. We had an initial craniosacral eval this week, with a few minutes of treatment. I can't imagine that it could have so much effect so fast. And if it is the cause, couldn't we have the great stuff without the tantrums? Please?

Friday, November 7, 2008

I am so glad it's Friday!! Michael had two days off from school this week, making for a very bored child. It's a gorgeous day here today, so Steve and Dan are going to take Michael to a park after school. Last week, they introduced him to throwing gliders and watching them fly across a field. It's just a guess, but I am sure he will be very excited to do it again this week.

My heart smiles every time I see him enjoy 'typical' kid games. It wasn't that long ago that he didn't have the coordination to throw a plane, or the eye tracking to watch it fly. Now, he laughs and giggles as he runs across the field, chasing them. He still gets tired a lot faster than the other kids, but he has helpers to chase when he needs a break.

Michael also starts another session of swimming lessons tomorrow. He goes to a local program geared toward kids on the spectrum, Sports Plus. The classes are designed to be somewhere between a fully adapted program and a standard swimming lesson. When he first started, Michael was afraid to get in the water without someone he knew. Now, he goes off happily with whoever is teaching. He's not quite swimming yet, but he can use a kick board and put his face in the water. Progress is good!

Other than that, I am looking forward to a calm weekend. I have a mountain of filing to do and the dust is taking over, but I am hoping to squeeze in some quiet cuddle time too!

One last thought. Do you know about the sensory friendly films? It's a project between AMC Entertainment and ASA. There are many locations around the country showing Madagascar 2 tomorrow at 10am. We can't go because of swimming, but it's a wonderful opportunity.


OK, I should have known better than to plan ahead. I got to school to find a child about to go into tantrum. It was so bad I had to call Steve to come get him into the car. So, now I'm scratched and bruised and just don't feel like being positive. Tomorrow will be a better day, right?

Tuesday, November 4, 2008

Learning to Swallow Capsules

Every day I understand more and more how much easier life is now that Michael can swallow capsules. Before, if we wanted to go away for a weekend, we had to pack a small cooler's worth of his pharmacy. Now, it's just a couple pill cases and two small bottles. So, much easier!

I had read about different techniques for teaching children how to swallow pills, but they didn't really seem to apply to Michael. As with most children on the spectrum, the best way to accomplish anything with Michael is to play to his strengths and interests. He has always loved playing with water, so we decided to make it a game.

· First, we had him practice holding a small sip of water in his mouth, without swallowing it. (This is the part he loved!)

· Then, we had him put a capsule toward the back of his tongue. We were careful to let him do the placing, so he wouldn't get over anxious. We also made sure that he didn't put it far enough back that it would cause him to gag.

· Next, we had him take a small sip of water and hold it in his mouth. He was a little more wary with the capsule, but still loved the game.

· Finally, we asked him to swallow the water. He was distracted enough by being allowed to play with the water in his mouth that he was able to easily swallow the capsule.

Once he realized what he had done, he was so proud of himself! He switched entirely over to capsules that weekend, and hasn't looked back since. He's been suspicious of new capsules and tablets, but has really adapted well.

I realize that this approach to swallowing capsules won't necessarily work with every child. I think the key is to really think about what your child likes, and is good at. Then, take those strengths and try to make a game of it. Sometimes, they just surprise you.

Monday, November 3, 2008


I wanted to ask everyone to please read this wonderful article from Age of Autism. I keep thinking that one day someone is going to have to answer to the damage done to our children. The article doesn't give a great hope for that, but does show that a vaccine conspiracy is not far fetched at all. Please take the time to read the article. Thank you!