I had to take a break from blogging for awhile. I was feeling overwhelmed with everything going on at our house and I it amounted to a big case of parental burnout.

But we’ve been working hard on getting through it. I left the kids with HB for a weekend and went away with some girlfriends which was very therapeutic. I didn’t have to worry about anyone but myself for two days and to spend it with friends that you don’t get to see very often was fabulous. To top it off, I made some new friends too.

When I came back on the Sunday, I received an email from Superman’s teacher calling a meeting with himself and the principal. My gut was telling me that it was going to be big. It wasn’t going to be an attack like it was at Superman’s previous school but I told HB that he needed to stay home from work and come with me (which I don’t normally do) because it was going to be big. Turned out, my gut was right. ;) It was a productive meeting, but a hard one. Superman is struggling in his new environment and is not integrated with anyone, including the regular AS class. It was suggested to us that there is a possibly that something is missing from his diagnosis and given that the suggestion came from his teacher, and he is someone I feel I can trust, I didn’t dismiss it. In fact I gave it a lot of thought and both HB and I agree. So the following day I met with our GP and asked for a referral to the Neurodevelopmental Tourette’s Clinic. She gave it to us and now we await the call from the clinic.

The school is short staffed on EA’s and there’s not the one to one support that Superman needs. So they requested that he only attend half days until they can find a suitable part time EA for the morning. Superman spends the afternoons with Tim (who he refers to as “the big guy”). I was assured that the board was on the hunt for someone and I’m praying that it will be a good fit. I wish Mr. S had his pick of people so that we could get someone with some sort of experience with Autism but that’s not the case. Regardless, I know that he will keep a good eye on things and train them and lay down the rules as to how they are to handle Superman and anyone else they interact with in the class.

In the meantime I’ve been playing phone tag with more agencies than I really care to count. Trying to secure services for Superman and it’s a huge headache. I also was feeling like I was going blindly. That I wasn’t sure exactly what type of support I was looking for, what my choices were and what would best be suited to Superman and our family. I felt apprehensive and yet again, my gut was screaming at me. So, as I’ve learned in the past, if I don’t follow my gut, I have regrets. I felt that the answers would come to me. And they did.

They came in the form in an intensive 3 day Autism Symposium hosted by the Geneva Centre this past week. HB took the time off work to watch the kids so I could go. The entire three days were a dream. Everyone that you read about in the field of Autism was present. Wednesday was a 5 hour lecture by Dr. Tony Attwood. He’s like out of a Monty Python movie and I could have listened to him alone for days. So knowledgeable, funny, and he makes you see the beauty in autistic kids, not just the deficits. I left Wednesday feeling very strong, capable, and empowered.
Thursday was 8 hours spent in lectures geared towards parenting, play, social skills etc. I listened to first hands accounts from Temple Grandin and Ros Blackburn. To hear their words of wisdom and what it’s like to be on the other side looking in. I laughed and I cried. I went to lectures on Integrated Play Therapy by Dr. Pamela Wolfberg, Raising autistic boys through adolescence by Alyson Beytein who has three boys ages 12-15 who are all on the spectrum. Interestingly enough, her oldest is 15, has Aspergers, and has the same name as my little guy. Plus, her stories of him were identical to ones I’m sure I’ll be telling about my own. I really identified with her, her sense of humour and her approach to parenting. It was like looking at myself 7 years down the road.

I also heard the scientific findings of Dr. Corchesne and Dr. Geraldine Dawson. The knowledge they have gained through research about the autistic brain has had a huge leap forward in the past several months and it was exciting to hear. I’m going to do a separate entry on a later date after I can get all of my notes together.

One of the things that hit home the most for me was that they now know that Autistic kids go through a degenerative state sometime after the age of 5. I’ll skip the medical mumbo jumbo so I don’t lose you, but basically the autistic brain is bigger and contains more volume than neurotypical kids. So the brain releases something called “micro glia” to get rid of dead or dying neurons to be able to bring the brain back down to a normal size. Glia is not found in typical kids or adults, but it’s the same thing found in individuals with Alzheimers. The problem they feel might be happening is that the glia is creating a neurotoxin environment and it’s killing off healthy cells as well. The end result is autistic kids losing skills they once had.

That explains why Superman could once do cursive writing and excelled in Math and now he struggles greatly. We’ve noticed at home that there are things that used to be so easy for him and now he struggles and it’s like it’s just disappeared from his brain.

That knowledge, although wonderful in the sense that I feel like I know what we’re dealing with, puts me in a state of grieving. It’s something I can’t even begin to explain because the only people who would probably understand are parents of Aspies or the Aspies themselves.
The research they’re doing is encouraging. They’ve learned more in the last few months than they have in years and I pray that our kids/adults with Autism will benefit from it.

One thing that so many people said over and over again, both educators, doctors, and Aspies…. “Austic people are not the problem. They should not have to change. What needs to change is the way society sees them and how they treat them.” In the words of Temple Grandin “If there were only ‘normal’ people, the world would be a pretty boring place.”

Very well said Temple. Very well said.