Saturday, February 1, 2014

Our journey through Autism

"Colin, can you look at me?" "Colin?"
And then there's a brief moment, when those big brown eyes focus on me. He's engaged, he sees me and lets me in. There's so much light in those eyes that I love so much.
The focus doesn't always last long. You can see a physical shift, his eyes haze over and he disconnects.

My son having Autism isn't an easy journey, for either one of us. But it has taught me so much. Colin is very, very smart. He's so funny, and quirky. He melts my heart with a little cock of his head to the side and a smile.

Finding a way to reach into his world, to convince him to join ours, is the challenge.

I'll never forget the day that I drove Colin 3 1/2 hours away to be assessed and diagnosed by a team of doctors. I was alone and scared, and knew in my heart before I went with him what they were going to say: your son is Autistic.
I had been around a few parents and children  who faced the same challenges enough to recognize the "warning signs". Colin rocked back and forth and flapped his hands and fingers, he wouldn't make much eye contact at all. He didn't play with toys. He was non-verbal.
After interviewing me and studying Colin the diagnosis came quickly. Colin had Autism. They also wanted to do tests for Muscular Dystrophy (later ruled out...he was 22 months before he walked for the first time, obviously another big concern).

I came home with mountains of paper work to fill out, and lots of tears in my eyes as I wondered how I could do this. I didn't know how to be Colin's advocate. I didn't know what questions to ask, how to fix it. Don't we all, as parents, want to fix it for our children? I was overwhelmed with the idea that Colin may never lead a "normal" life. I didn't want him to struggle. I was frustrated. I wanted to scream that we had been through enough already. My pregnancy with Colin and his delivery were not easy, dotted with lots of physical trauma throughout my pregnancy, at least three times that I can think of that I was told "this may not be a viable pregnancy", and me having seizures during delivery, where I delivered him with a knot in his umbilical cord.

I remember in the days to come after his diagnosis, I looked back at the stacks of papers and tests given to me and I kept seeing all of the deficits pointed out.
All of the things marked that Colin "can't" do.
He scored as mentally retarded, although the doctor was kind enough to assure me that they have to go by standardized testing and he felt confident that with the right help my son would overcome that label soon enough.

I did what I knew to do, and started taking the appropriate steps to enroll Colin in therapies and programs to help him. Change is so huge for any Autistic child, and there were a lot of days where I'd have to drop Colin off with his teacher and paste a smile on my face, hug him and tell him to have a great day, while he cried and reached for me just until I could get out of the room and then break down into tears again. This was so much more than an average child's reaction to their Mama leaving them at daycare. This continued with every new classroom, every new the beginning, change was so traumatic for Colin that if I drove a different route to school he would bang his head against the back of his car seat and yell.
I'm so thankful that I met several people at his school who gave me a lot of hope for Colin. They truly care for him, and see in him what I do. That Colin is going to do some really great things. That he's much more than a statistic, much more than his Autism diagnosis.

One of those people became a life line to me, and I'm so glad to say that she's still working beside Colin every day, cheering him on and helping us both greatly!

Colin understands. During one moment of great eye contact we held hands and I asked him to please, let me hear his voice. It seemed like forever that he stared into my eyes so intently. He heard me, and he was trying.

It's been nearly three years since Colin's diagnosis, and still there are days that are overwhelming. There are times that we opt-out of social gatherings or have to leave early because Colin will have panic attacks being in a room with too many people, or in a strange environment.

I try to keep a happy balance of striving towards Colin having total independence one day, and of celebrating tiny little moments of progress that I might have otherwise taken for granted. Colin called me "Mama" this week. He hasn't said that since he was 2 1/2 years old!
I couldn't have been more proud of him. He, after all, is the one doing all of the work. I'm just doing my best to guide him.

My sweet boy, with his innocence. He's happy, and kind, and loving. He is going to be an amazing man one day, and he's already an amazing son and brother. I'm so blessed to be his Mama.

If your family has recently started a similar journey, or if you want to be a support to those who have, please check out Autism Speaks. They're a great resource for information.
And most importantly, don't forget to love these children just as they are. Who they are is pretty awesome.

No comments:

Post a Comment