Sunday, March 6, 2016

Communication and Hope

I saw a post on Facebook about a 16 year old boy that has autism, is non-verbal and his autism was considered severe. You can find the article here:

He now communicates very well with his iPad, is mainstreaming in school and is even on the honor roll. The article really had my full attention when I read that at seven his mother realized he could spell. I knew Lucas could spell when he was around 4-5 years old.

This is the part of the article that really got to me:

"“I talk in my mind, but my mind doesn’t talk to my mouth. It’s frustrating, even though I can communicate by pointing now. Before I could, it was like a solitary confinement. It was terrible having experts talk to each other about me, and to hear them be wrong in their observations and interpretations, but to not be capable of telling them.”

Boog is a very happy boy 95% of the time. I admit we probably talk about things around him that you shouldn't speak about around a six year old. But autism is the only parenting I know and it's hard to think that while he's on the other side of the room, looking completely engrossed in his iPad, that he may be hearing and understanding every word that's being spoken. 

I have no way of knowing how much he understands. I hope one day he will be able to tell me. 

Speaking of hope, this article gives me more hope than other similar stories because it states he was non-verbal and severe on the spectrum. The school district placed Boog in between mild and moderate. Dear Lord, does that mean one day I will be able to have a conversation with my only child? Will he be able to type to me his feelings, wants, needs? I admit that it's hard to have faith that this will happen one day.  I should have more faith because he is doing so much at school. He's coloring now without any assistance. His teacher has proven he knows a lot of things like the days of the week, names of colors, shapes, nouns and more. 

So why can't I just be confident that he will communicate with me one day on that level? Because in my analytical mind I unfortunately believe the quote, "hope breeds eternal misery". That doesn't mean I don't believe in my son. It means I have to keep my heart very guarded to function. I have to be realistic to survive this. I feel safer if I prepare for the worst. That way I'm safe if it is the worst and nicely surprised if it's not. That's not the way people (doctors, therapists, etc.) advise you to think, but they're not raising a child with Autism either. 

So, yes I will try and have hope. I know Boog believes in me without a doubt. I know he works so hard every day at things other kids can do with no effort. I know he's learning more and more. I know we will get there.

-Boog's Mommy

**Edit: I should have mentioned that Boog is doing very well with an augmentative communication app on the iPad. He's showing me requests on it that I had no idea he knew. That's why Ido gives me so much hope. I want Boog to keep going (and teach me on the way!). I hope people that still think these devices impair speech will realize not only does this technology promote speech, but they give non-verbal people a way to express things they have no other way to express. This eliminates so much frustration for them and they deserve that. They deserve to be heard no matter what way it is communicated.