Walking on Air!

I am walking about six inches above the ground today. We went to the open house at Michael's new school yesterday afternoon. It was so wonderful to see a whole school dedicated to students with special needs, where everyone was really focused on bringing out the best in each child. Michael has been smiling each time he talks about school starting on Monday. Such a change from last year!

The classroom he is in only has five boys right now, although it can go up to nine. There is one teacher and two assistant teachers. Plus, two of the boys have dedicated one-on-one support. So, there are five adults in the room almost all the time, with OT, PT, and Speech therapists, a behaviorist, and social worker coming in and out to work with the kids.

But, the very best part is how well all the teachers and staff understand Michael already. At one point, Michael was getting a little agitated, and I pointed out how the pitch of his voice rose when he was upset. The teacher had already noticed. Such a change from others who have worked with him and escalated the agitation because they couldn't recognize it until Michael became physical. I really have a great feeling about this school year!

My Parents are Visiting

My parents are here to visit this week. They live several hours away, so a visit is quite a treat. I had told Michael Tuesday morning that they would be coming to visit after school that day. His first response was "I want them to visit BEFORE school, not after." But, he eventually settled on the idea that he would have to wait a few more hours.

When they finally arrived, Michael was so happy to see them. He ran to the door as soon as he heard the doorbell, and spent most of the evening jumping up and down in excitement. Michael normally does not like to perform, but he went through every word and phrase he'd been learning in Spanish, just to impress his grandparents. They were so thrilled.

On Wednesdays, Steve picks Michael up from school a little early and takes him to OT. I warned Michael yesterday morning that Grandpop would be going to OT with them. I didn't mention anything about him coming in to the school to sign him out. When he got close enough to the office that he could see who was there, he proudly told his teacher "That's my Grandpop!!". She was floored since Michael seldom shows excitement, much less tells her anything he cares about!

Every time I hear about how kids with autism aren't affectionate and don't form attachments, I think of Michael with my parents and Steve's mom. It's so wonderful to see him so engaged and happy. On one hand, I hate that my parents can only visit every so often, but on the other, it's awesome for them to see how much he grows in between visits!

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!

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.

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.

A Really Good Day!

Today was a really great day. Michael did well at OT, cranked right through his homework, and just had great listening all night. Then, when it was time to go to bed, he was playful and giggly. They had read the "Sally sells seashells by the seashore" poem at school. I think we came up with every rhyme possible, and all the silly sentences he could come up with talking about it. It was so much fun. So, he got to sleep long after bedtime, but I don't know that I have ever felt so connected for such a long period of time. In some ways, I didn't want it to end, even though I knew he had to get some sleep.

Tomorrow is a big day for me and Steve. We're going to the Pittsburgh Autism Expo, and leaving Michael with his uncle. I think I'm going to miss him more than he will miss us. He already has planned out all the fun they're going to have until we get home Saturday night.

I'm really looking forward to hearing David Kirby speak, and just getting away with my husband for a few days. Hopefully, I'll be more educated and much more relaxed when we get back!

See you Sunday!!

The Good, the Bad, and the Hopeful

Today was a really good day, and a really bad day. After all the good stuff we've been telling you about, I guess we were due for a setback.

First, the good. Today was the open house at Michael's elementary school. So, we got to spend 2 hours in the classroom(s) with him, and see his 'other' life. In the special ed room, he stayed in location pretty well, did what was asked of him, and participated. It was great to see some of his strengths. When it came time to see him in the mainstream room, it was obvious that he doesn't have the self direction to be there full time yet. Where the other kids could go from center to center and do the assigned tasks, he needed constant help focusing. He could read the assignment, answer the questions, and do the tasks. However, if there wasn't an adult with him, he'd be all over the room, getting into everything.

The bad: he had two major meltdowns today - one at school, and one at home. He recovered fairly quickly from the one at school, but the one at home took longer. Since it was so out of character for him, we had to do a little digging to try to figure out what happened. When we opened his lunch box, most of his lunch was untouched, and his water bottle was mostly full. Given that he was hungry and dehydrated, I'm not surprised he had trouble controlling himself. We also found out he had a headache most of the afternoon. So, we're giving him the benefit of the doubt, and trying to work with the school to keep him fed and hydrated.

He was a little nervous at bedtime since he knew he got a bad report from school. It was nice to see that he was actually reassured when we told him that the teachers knew he wasn't feeling well, and that no one was mad at him. We told him that tomorrow is a whole new day, and he can make it a great one. Hopefully, he will!