Parenting Micah has been a journey that has it's own set of ups and downs. It's parenthood on crack. The downfalls are so much lower and hit so much harder that the upswings are even more joyous and celebratory than normal. And I'm talking celebrating things like climbing a 6' chain link fence. There's so much there to be thrilling over that the fact that he could easily plunge head-first onto a very large rock and suffer a severe concussion (or worse) barely registers. It does register, mind you, but barely. You see, Micah is just 5. What other 5 year olds climb 6' chain link fences? But there's more. He has low muscle tone, he has impaired motor skills, and he has the mental capacity of a 2 year old. Climbing anything is much more difficult for him than for any other 5 year old, and yet he thrills to do just that. And we're right there rejoicing with him. Scared out of our wits, but rejoicing nonetheless.
But there are the downfalls, too. The things just mentioned make so many things just plain impossible for him. And his lack of speech has been a source of concern and frustration to us for years. Will he ever talk? I have every confidence that he will. I have no idea if it'll be clear enough to be understood by anyone outside his immediate family though. Or even when the msyteries of speech will reveal themselves to him and unlock the potential that lies inside him.
Without speech it's so very difficult to know what he knows. Can he count? Does he know his colors? Has he any clue that an alphabet exists? And yet I know he's incredibly brilliant. The dog count in our house changes from week to week. Literally. And yet when I let the dogs outside, he will stand at the door and yell until every last one is in. He's aware of the changes and knows which dogs they are. Things like that amaze me. I have no idea what's going on inside that head of his, but I know his wheels are turning, and turning fast. Speech could do so much. And yet, it's just not there.
I found a book called Schuyler's Monster about a father's journey with his wordless daughter. Wow. Just wow. It's my life, and his life, and her life, and Micah's life. The ups and downs, the heartache and hopes, the fears and frustrations. But this family was introduced to communicative devices and it unlocked a world of words for Schuyler.
We've been asked by the Downs clinic and therapists if the school uses any communicative devices for him. I've asked the school, and everyone who brings these topics up, what devices they would be. The answers all seem to end in language I'm not familiar with or some sort of vague tried-and-failed mumbo jumbo.
I hate that I've not explored these options any further on my own. I feel I've failed Micah somehow. Why didn't these very people tell me exactly what was out there and allow me to make a choice for my own son? I'm so frustrated that there could be something to help Micah convey his thoughts and feelings, and yet nobody told us. And I never found it myself. But now I know.
The thing that has me most frustrated is the fact of finances. I know for a fact that these devices aren't cheap. And I know for a fact that schools are expected to provide these for their students if necessary. Which makes a lot of sense to me why the whole fancy talk and mumbo-jumbo happened when I questioned about these devices. It looks suspiciously like they wanted to turn me off of something that would make them spend a small fortune on my child. I'm not saying that's how it was, but you have to admit that it looks shady, right?
I called his preschool today and asked if they had one we could borrow. I'd want to know if it's something he could be coerced into using before pursuing anything for sure. They transferred me three times before mumbling something about "through the Harrisburg office" and "waiting list."
These people don't realize that my dander is up. Mama Bear has come out of the shadows and is on a rampage. We have just over a month until school begins and I'd like nothing more than to have him start school with one if he will use it. Or can use it. And in this month we've got to get our hands on one and have time to try it. I pity the person who stands in my way.
My next step will be to call his kindergarten tomorrow and ask if they have one. And then his services coordinator who's in charge of weird thigns like this. And I may even call the company that makes these and ask if they ever loan trials out. I will explore every option that I can possibly think of until I get some kind of instant satisfaction.
If I don't fight Micah's battles, who will?