Saturday, May 14, 2016

And one day, he was no longer silent.

I read this amazing post this morning about a young man, just a wee bit younger than GP. He is non verbal and now uses an app to communicate.
You can read it here. 

I t made me think of a time, no so long ago (in my heart it feels like just yesterday, as the hurt is so real and still so raw) when GP was silent. The days were fraught with screeches and tantrums, and the misunderstanding that he was "not there". It was a common misconception that children with autism were incapable of speech. It was a "thing"... a label, a grossly negligent fable told to parents by "professionals" who could not get the words out of them. I was one of the lucky ones. I was told that GP "could" speak (he was physically capable of speaking), but he chose not to, 
AND that he might never choose to speak. I don't know if GP's path to being verbal would have been the same if I was told he "couldn't". 

As a parent one always looks for guidance from those who have more experience than us. The pediatricians, the therapists, anyone older and wiser seems like a good "counselor". The last person we listen to is ourself. Self-doubt trumps all. However, in the end, it is US, the parents of the child who have to take care of them. We are the ones who are ultimately responsible for our children. It is up to us to decide the course of action to be taken to get them on the path to success, and let's be clear, success is not always a scholarship to Harvard. Sometimes success is as simple as being able to master public transportation and make change at the supermarket. Success is like beauty, it is in the eye of the beholder. Let me tell you, it took me a LONG time to understand that... and I do mean a long time. Hardest lesson, ever.

But, anyway, back to the post. I just remember being in so many meetings going over and over the "options" brought to me by the public school system. I remember the symbols, the cards the notebooks (these big electronic keyboards that spoke when you typed)... (there were no iPads back then). And I remember turning them all down. I remember fighting for GP and telling them that he would not be using them because he needed to have a communication device that he would not lose, and that would not run out of batteries, or need a plug. They were such heated arguments, over and over.... it was exhausting. I get tired just revisiting those times. "But, Mrs. Mercado..." It was like they didn't hear what I was saying. 

GP is a visual learner, like many autistic people. You can't see words, so speaking just doesn't make sense. (You can't SEE words that are spoken) GP was one of those. Once he started signing (we did teach him that at home, because at school they did not teach children to sign back then, don't even get me started!), and he could SEE what he was saying (which is really the same principal used when using a picture system), he "got it". Once he "saw" that written words, "hand words" and spoken words were "the same", I think it just "clicked". It took six months to teach him how to speak. It was hard, it was emotionally draining and it was incomprehensible that something so "natural" was so hard for him, but it was. It was SOOOOOO hard. There were tears, there were tantrums...ugh.

To this day he struggles with language. He can read and his spelling beats any spellcheck I've ever used, but language arts is like kryptonite. It's so stinking hard. It kills me to see him struggle, and  I struggle with my own shortcomings as an educator, as his parent, as his guide in the murky waters of language. It's hard to help him navigate the tides of that storm that come daily. I want him to wake up one day and just be able to hold a conversation without using the wrong pronoun, or the wrong tense... or simply without getting so frustrated that he can't articulate what he wants to say that he just says, "Oh, never mind" and leaves without telling me what he wants to say. 

I never lose sight of how far he has come, and I never forget that he is no longer silent. When I read stories of young men of GP's age group, who are just now finding their voices, I always get emotional. That road out of "the silence" is so hard. I can't even begin to describe it. It's like a forest that gets darker and darker, and you just can't find your way out of it. You don't know how far it goes because you can't see the light at the end. When you  talk and talk, write and write, sign and sign and you just have no idea if your child gets ANY of what you are trying to convey... but you hope and you pray, and do it over and over. Then one day, you hear that sound, that sound that you recognize as a word....
I can't even.  

I'm so happy for those who are finding their voices now. One can't change the past but the future is wide open. I hope that more nonverbal people find their voices because they do have one, even if you can't hear it. 


Marie said...

Brenda you are an amazing Mom, and GP is an amazing SON!!! There are no words to say how much joy I receive from your postings about him. No matter what he does you praise him and give him unconditional love and I just wish all parents would wise up and do t he same!!! Love to you and GP and just maybe some day I too will see the Pumpkin Patch. Hugs, Marie

Lori said...

It's sweet and heartbreaking at the same time. Too many take the easy route and do not buck the system. Good for you for persevering and understanding what your son needed. XOXOX

Pam Walton said...

You are an amazing Mom.
My daughter works with Autistic children in Toronto, Canada. I am always amazed with her challenges that face her daily. But when her story has a great ending, no matter how big or small, I can hear the happiness in her voice. And as I read your story I hear the happiness in your voice.
GP is blessed to have such a strong voice in his corner.
Pam from Canada ox

PatC - All is Bright said...

I have to agree with the earlier comments - you are an amazing Mom. I will continue to pray for both you and your son.

Blessings to you both