Tuesday, June 25, 2013

Functional Langauge

On a daily basis I feel good if Brian answers five of my questions correctly.  That's with a "yes" or a "no" or repeating one of the choices I gave him (not just the last thing I say).

We still get a whole lot of "yes"s for things we know he doesn't really want to answer in the affirmative.  For example, "Do you want brussel sprouts for dinner?".

However, he has hundreds and hundreds of words up there.

If he's in the right mood he can label everything, EVERYTHING, you ask of him.

He can differentiate a macaw from other birds and a tree frog from all the other varieties.

He can come in after making a mud pit in our driveway, catch a glimpse of his dirty reflection, and exclaim "This is not any good".

He can struggle with pulling up shorts that are way too small for him and then sing a song after he succeeds.

But we still can't get him to converse with people.

He can't tell us what's wrong.

He can't tell me about his day.

He usually can't tell me what he wants unless he can actually see what it is he wants, the visual connection seems to help his apraxic autistic brain.

I want all of those words he has stored up there to come out in streams.  I want them to be used functionally.  I want him to not have to struggle so much to pull those words out of the complexities of his brain.

He will grab my cheeks and look in my eyes to convey what he's feeling, but I still long to hear those words.

However, those little bursts of song, those little scripted lines that he uses in the perfect context...they give me hope.  

At one point I was told the language  that Brian had at five years old would be indicative of his language ability for life.  Obviously that was a lie.  One of the many stupid things I've heard from a range of professionals.  Brian continues to grow all the time and my hope will never falter that there will be MORE for him.  More language, More happiness, More health, More connection, More hope.

Wednesday, June 12, 2013

Just A Taste of Why He's Amazing

I may have checked out the past couple of weeks.  We got new diagnoses and with that came the self-doubt and the guilt and the questions.  Should I be doing something different?  Am I not pushing enough?  Am I pushing too hard?

In the meantime, he keeps blossoming into this amazing person.

Two nights ago he broke down into tears.  Because he couldn't eat the rice on his plate.  Yes, he has a harder time at mealtime than his brother.  Yet, it wasn't something that needed tears.  The tears grow into other emotional problems and then he starts breathing so hard that I'm worried he'll have an anxiety attack.

The problem was that we were having ice cream for dessert.  And it's not a rule we budge on.  If you don't eat your dinner, you don't get dessert.  But we don't have dessert very often so when it's available it's a big deal.

He did end up going to bed with no dessert and we were able to dry up those tears and get some hugs and laughs before bed after an hour or so of the tears.

Last night, Brian was the one struggling with dinner.  We had potato salad and he is not a fan.  Corbin finished his up in no time.  Brian was screaming at me because he knew there was ice cream and he didn't want to eat the potato salad.

Part of me expected Corbin to be a bit smug.  Just the night before Brian had had ice cream and he had had none.  Quite honestly I thought that may be a typical response.

However, Corbin stopped playing his game and came and sat next to his brother who was still sitting at the table trying to coerce me to give in.  Corbin patted his back and started talking to him in a nice slow voice telling him he could do it.  He then leaned in and picked up one piece of potato and said, "Here, I'll help you, but that's all I'm eating because I know you can do it".

Brian ended up eating all of his dinner and both boys enjoyed ice cream together.

So yes, we may have learned last week that Corbin has a bit more struggles than I thought.  Or maybe it was just it seems more now that it has labels...but regardless, he is an amazing person growing up with all of the attributes I find to be important in people.  He is simply wonderful.

Wednesday, June 5, 2013

To Be Anonymous Or Not

I have enjoyed blogging thoroughly throughout the years.  I do find that it evolves and comes around full circle at times, the amount I need to do it.  It has been my lifeline at times as I craved to hear someone else tell me that they've been there, they've done that, and they've survived.

Early on I asked myself whether I should blog anonymously or not.  At the time I didn't feel like I had anything to hide.

Quite honestly I never thought I'd get to the point where I had to worry about Brian's peers finding my blog and teasing him about it.  Yes, there are always going to be those ignorant little brats that will make fun of him for no reason.  But as the whole his differences are huge enough that kids are tolerable.

Does that make sense?

In a way I think kids that have just little quirks, that can talk but can't figure out social communication, that can keep up cognitively (maybe even better than typical peers) have it harder as far as bullying situations go.

As Corbin gets older we continue to see his little quirks magnified.  At the same time I just keep seeing how much more amazing he is.  He keeps getting new diagnoses thrown at us and I want to blog about it so DAMN bad.  I want to blog about raising two kids with very different needs in one household.  I want to blog about how Corbin breaks the mold.  I want to blog about how, that even though they both have these diagnoses, how different I worry about their futures (and how I feel like I can spread some light on this whole Acceptance battle in the ASD world).

But he's one of those kids.  One of those kids that may actually read this blog in the future.  One of those kids whose peers will read it and not read it to understand but read it to pick on him.  And he's one of those kids that will care what his peers think of him, unlike my other son.

And I'm stuck.

Wishing that five years ago I started this anonymously.