I think the best place to start, for this purpose would be 2009. That's when Parker, my now 5 year old, was diagnosed with Autism Spectrum Disorder. During the six month wait time for our test, we began receiving Speech and Occupational therapy through ECI. On Parker's third birthday, he graduated that speech course, and as per the request of Austen, I pulled him out of school to attend graduation.
Austen was always working with Parker. He would pick up toys, and ask Parker to repeat him. At the time Austen was only 5. "Parker, Look, T-RU-CK can you say TRUCK?" and he would put it down, "VROOM VROOM!". Every time I turned around my 5 year old was helping his little brother. He wanted to learn everything he could, so it was no surprise he wanted to come for the actual test.
At the conclusion of the test, I was told, obviously, that Parker had Autism Spectrum Disorder, along with Severe Sensory Processing Disorder, Auditory Processing Disorder and "Probable" ADHD. I sat and listened to the doctors tell me all of this, and noting my 6 month pregnant belly, inform me that because I had one child on the spectrum, I was likely to have more.
It's funny because as all of that was happening? I had already been preparing for it for nearly 6 months, and I thought I was ready, I was SURE that my son had Autism but for some reason? Hearing it made it all the more real.
My boys' father has a job that keeps him on the road 200+ days a year. We had relocated to San Antonio, TX from Minnesota. We had hardly any friends, and no family. I found myself doing most of what needed to be done, "alone". Only, I wasn't alone. I had my Austen.
It's funny because you think that getting a diagnosis like Autism would make me far more worried about that diagnosis- but what freaked me out the most is how it was going to effect Austen. I was worried that our life was going to be so much harder, so much more work, that he would fall by the wayside. I was worried he would feel as though his brother got more attention than he did. My first move was actually to attempt to find AUSTEN support- before even securing support for Parker. Before I left that office the day of our testing- I requested any and all information for support for siblings, I was just as shocked then as I am today at the few options I had- but I did find one- and twice a week Austen began to attend a sibling support group for siblings of Autistic children.
He loved his Sibling Support group. He loved the kids there, he loved the councilors who were there. Then? One day? It shut down unexpectedly right before I was due to give birth to my 3rd child. I was devastated. What were we going to do? Austen was crushed as well. What horrible timing, a new baby coming and all the more need for Austen to have his own support.
I think I was overlooking how strong he was. He had asked to go to some of Parker's intensive therapy sessions (I took 12 weeks of Parent training in Speech Therapy, Occupational Therapy and Behavioral (ABA) Therapy. Austen had attended nearly half. He wanted to learn how to work with his brother, and boy- did he.
Parker and Austen have been best friends forever. Austen wanted to know how to "help" every step of the way. I tried to be so careful that he didn't get overwhelmed - or that I wasn't putting too much on him. I was constantly worried about it, and yet? Austen just took things on himself.
Now here we are and in this last year? Some amazing things have happened. This child never ceases to amaze me. He is the happiest most outgoing child. Loves to help other kids like his brother so much? That one day he came home from school and I couldn't have expected what he would say in a million years.
Austen: "Mom? I didn't have a very good day at school. I'm really upset!"
Me: "Why Austen? What's wrong?"
What followed broke my heart into a million pieces, and caused me to beam with pride. Austen sat and told me how these two boys (We'll call them J & N) in his class who - in his words - "Displayed Autistic Tendencies" -were getting picked on in his opinion. He sat and cried his eyes out talking about how his classmates had called the children "weird", he said, "I don't much like them calling my friends weird, and I wouldn't much like them calling my brother weird either. All J & N want is to have friends, just like all other kids my age."
Seeing how upset he was, I felt the need to pose the question: "Austen, you are so supportive of your brother, but you deal with Autism at home so much, do you think that maybe? Doing it at school is just a bit too much? Maybe you should use school as a chance to take a break from it, and just, you know, be a kid?"
I should have known better because his response was, "You know what Mom? If my friends want to think I'm weird for being friends with J & N, then they can just do that, I'd rather have J & N as my friends than any one else in my class. I'm not sure I like *typical* people any more anyhow. "
His response left me shell shocked to say the least. How was I supposed to respond? Then I was struck with (what I thought) was a great idea. "How about if I talk to the teacher and see if you can talk to your class one day about your brother, maybe raise some awareness? You do have to understand Austen, not all kids know as much about Autism as you do. They see J & N and don't know why they seem 'different' and differences are sometimes scary."
Austen thought it was a great idea. He voiced his concerns about the aid, and how she interacted with J & N. He also mentioned how the kids in the class would use the aid as a "threat" to J & N. With tears falling down his face he said, "J won't even try to be friends with anyone anymore because they always say, 'Leave me alone or I'll tell your aid' and I don't like it. Maybe if I talk to them they will be nicer to them!"
I emailed Austen's teacher a very lengthy email the next morning. I got no response, so I asked her if she had gotten my email, she said, "Oh I emailed you back? Didn't you get it?" - I told her I had not and asked her to resend it to me again. Still to this day - no email - however I took the opportunity at the next set of conferences to talk about it with her. I was astounded when she responded, "I don't know why Austen feels that way, I have found that this class to be more compassionate that most." I then suggested, once again, that Austen could talk to the class about Autism, talk about his brother and what it's like to have a sibling with special needs. I was told that this would be a better thing for the councilor to do. - Of course then- when Parker had his IEP - which was set up to transfer him to Austen's school at the start of Kindergarten next year- if she had ever seen my email, she had no clue what I was talking about.
I would get started on my rant on lack of awareness in the *typical* classroom setting, but- I will save that for a whole different story.
All of it has left me dumbfounded. Parker has been in a different school because Austen's school doesn't offer the PPCD program. The whole ordeal has made me feel as though the school? Is just NOT special needs friendly, so much in fact that we are looking to move from our home, where we have been since 2005, just so both children can attend the school where Parker has been going the last few years.
None of it has held Austen back, when he wasn't "allowed" to talk to the CLASS about it? He started targeting kids one on one. Anyone who will listen to him talk about Special Needs and the importance of inclusion will get an earful. He has told me that he would very much like for me to work towards doing assemblies that raise awareness for all special needs. He has asked to be able to explain how all of us are different in some way. He even suggested that the kids interact by all admitting how they are "different" in each of their own ways. To me? He is an old soul will do many things for the Autism Community. Did I mention? He is only turning 9 in three days?
In addition to that - he wanted to know if he could go to Morgan's Wonderland for his birthday, and invite ONLY special needs kids to go with him.
It amazes me what my son has done in 9 year, 9 short years of his CHILDHOOD. He is an inspiration to me. He is an advocate for his brother, and if you ask his brothers? Both of them will tell you he is the best big brother in the whole wide world.
I will tell you- the same thing I tell him all the time, "He is my favorite 8 year old in the whole wide world", and in 3 days- he will become "My favorite 9 year old in the whole wide world".