Shaun and I started this "evaluation" thing on our way back out to Missouri to pick up the kids from Camp 2 summers ago. We took advantage of the time and really looked at each child, their strengths, challenges, and our hopes for them. We then wrote up some action steps that we could take over the next year to encourage them to meet their challenges, by using their strengths, and incorporating experiences for them to grow in confidence, ability, and development.
Kind of a "purposeful parenting plan".
(I'd like to think 13 years of IEP's and goal setting had nothing to do with it.) ;-)
In our evaluation of Anthony this summer, we came to a monumental decision. Although we didn't know it at the time. The weeks to follow have proven our decision to be our best move as parents yet. As most of you know, or in case you just haven't seen him in awhile, Anthony's Down syndrome and Apraxia have made the understanding of his speech nearly impossible... still. And this communication issue and the battles that come with it have left us simply heartbroken at times. To know he is trying so hard to say what he wants, and can't be understood. To have been locked inside, for ever. To be so alone at times. I pray that my own pain watching him, IS my own. And that it doesn't kill him like it does me. I know it hurts him, but I have no idea to what extent.
While Shaun and I were talking, we realized a few things. We are at a roadblock. He understands so much more that he can say! And the speech, although improving, is nowhere where we thought it would be by now. And we realized it is just time. Time to just change things for him. Time to just unlock his silence. Time to do SOMETHING.
When he was a baby "they" said speech would come. But late. So we did sign language as a baby while we waited. It worked amazing! At seven, we were still waiting, and we found out about the Apraxia. He was showing "behavior issues" and Shaun and I talked and decided we wouldn't be the parents that "gave up", but we would increase the sign while we continued to wait until his speech came. He took off. And has continued to use it ever since.
But this summer, we realized we are there again. His understanding is more than his expressive, and he's acting up, and we need to help him. And his "speech" is still so poor. And he's 13!!! We've dragged him to Arizona and Ohio for specialists, he's been in speech therapy FOREVER and this is where we are. The realization of it sometimes just angers me. For him, for us, for his friends and family. People just struggle connecting with him, and him with them.
I have these dreams sometimes. Where I pick him up from school, or he walks into a room I am in, or we are at a store, and at some point, in each dream, I look over to him as moves closer to me, we meet eyes, and he says something - clear as crystal. Sometimes it's "Hi Mom", or "good morning", or "can I get a new car?". But it's always the most beautiful thing, and I crumble at the miracle of it in tears.
And then I wake up.
And try really hard to go back to sleep, for just a little while longer.
I still want that.
"Giving up" that speech will come is too much for me to ever say yet. I still want it too much. I want to hear about his day, know what he wants for his birthday or Christmas, maybe even what his dreams are about.
I just kept thinking it had to sound the same as everyone else. There was no reason to think it wouldn't happen. No reason that "with time" it would come. But it's just not. It's better, but it's just not there.
Then one day - BAM - it hits me like a ton of bricks.
Sign Language.
He uses it.
A lot!
We haven't been using it as much as he has, no one does. Because he hears fine, he understands fine, and no one 'has' to learn it. So we didn't, and neither did anyone else. Us, family, or school. We all knew the "basics", and that's all we did.
It occurred to me while Shaun and I were talking that if sign was his only option because he was deaf, we all would have learned it. Wouldn't have thought twice about it.
And so, we all will.
Because right now this option IS the one.
I have cried so much, and felt so sick from the guilt that I didn't see this sooner. We left it all on him, to remember it all, and only use what he knew. We didn't expand it for him, teach him new words. Sign WITH him, so he wasn't alone. I still feel so bad.
But THANK GOD, it isn't too late!!
Since starting more signing a month and a half ago, he is SKY ROCKETING!!! His fine motor skills are so much better and now he can make them sooo much more clearly. He even got a teacher for reading this year who is fluent in sign and is teaching him more words!! And he will have her for the next 3 years! We got videos and now he even uses the new words he's learned to tease me. He is telling me about his day! We've started reading his favorite books in as many words of sign as we can, and he LOVES it. Lights up! He signs full sentences and his finger spelling is really fast! I am stunned at what is happening right before my eyes.
I selfishly battled with this decision so much because I didn't want to give up my dream of "talking" with him. (ugh.) I thought if we stopped the therapies, stopped trying so hard, that it somehow meant we were giving up on him. It just didn't click that it was never that at all. We needed to give IN to him and what he was putting right before our eyes. Now that I have changed my perspective - it has changed my life!
It astounds me that my dream is coming true right here and now! Yes, I had to redefine what my dream meant, but the dreams ARE coming true. Because he IS saying "hi mom" when I pick him up from school. He IS saying "good morning" when he comes into the room. And he IS asking me for a new car every time we go to the store.
He just does it with his hands.
Clear as crystal.
And he tells us he loves us. All the time.
We have hope again!
Handfuls of it!
