Tuesday, July 21, 2015

You Have Something Called Autism...

"JD, you have something called autism." 
Whew, I said it. I did it. 
Today was the day we told JD that he is on the autism spectrum. 

I should rewind a bit and explain why today. Jason and I have been talking about it a lot lately, about telling JD. He's seven years old and lately when he gets in trouble, he says he has "something wrong with his brain" or "his brain is broken" - I can see the frustration and confusion on his face as he struggles to understand why he does what he does. We struggled with what to say, how to do it, and if he'd even understand. But I knew it was coming. 

This afternoon I took the kids to the bounce house place to burn off some energy and while I was taking Kyle, my youngest, to the bathroom, JD bit a boy (and I mean like a full-on Jaws-sized bite). In full-blown tantrum - crying, screaming, throwing things - I managed to get JD to apologize to the boy and his mother, and get the heck out of dodge. 15 minutes of bouncing and $20 later, I was one ticked mom. On the way home I called Jason and said - this is it. We have to tell him. 

We got home and took JD into his room and told him we needed to have a talk. I just looked at him and said, "JD, you know when you get upset and you can't control your feelings and you get really, really mad? Well, that's because you have something called autism."

Jason and I tried our best to explain to him what autism is but it's not the easiest concept to walk through with a child. We told him that his brain works differently and that's why he has a hard time controlling his emotions or understanding how to play with friends. Amazingly enough he seemed to understand but it was heart wrenching to see him go through three distinct emotions - confusion, sadness and then relief. 

He was confused at first, but then seemed to grasp the concept, then sad when he realized he was different. Then he seemed to have this sense of relief that there was a reason he has a hard time with things. I can't really explain it, but it was just this weight had been taken off his shoulders. I explained to him that he isn't broken, or "evil" as he sometimes says, but that he has autism and we love him just the way he is.

The whole conversation probably lasted ten minutes and when we were done, JD went and told Kyle, "Kyle, I have something called autism and sometimes it makes me really, really mad." It was cute. He got it. 

I'm sure we'll have to keep having the conversation, but at least it's a start. The cat is officially out of the bag and I have to say it's a relief. 

Sunday, April 26, 2015

The Needs of the Many vs. the Need of the Few or One

If you're a Star Trek fan like me, then you may remember the phrase Spock says in The Wrath of Khan. “Logic clearly dictates that the needs of the many outweigh the needs of the few.” Captain Kirk answers then answers, “Or the one.” Who knew this movie quote would swirl in my head so many times as a parent of a child with autism. I've found it to be a struggle to decide if the needs of the many (Jason, Ashley, Kyle and myself) truly outweigh the needs of the few or one (JD). I have to confess that in our family, the needs of the one, outweigh the needs of the many. Case in point, staying in Sarasota, where JD is thriving in this school, versus moving back to Orlando where the rest of us feel at home.

When we moved to Sarasota, JD made it into one of the best autism programs in the country. It's called Pinnacle Academy and so far it's really lived up to its reputation. JD has flourished at school - learning to read, write, do math, history, science... with project based learning or PLB. He has occupational and speech therapy there, he's made great friends there and his maturity level is really at an all-time high (even though he still has a ways to go!). I couldn't be happier with Pinnacle. We've made great friends there and it's really a great community. But I'll be honest - even with as great as his school is, I miss Orlando.

I miss my friends and family. Even just 2 hours aways, I don't see them enough and by the time the day is over at 9:00 p.m., I'm so exhausted that I can't always make that call that I should. I miss my old job, I was great at my old job, and in a building of 700 people I always felt like I knew everyone. I miss my best friends there and the happy hours and the lunch dates. It's not the same here at my new job. Luckily, I'm starting a new position in a few weeks and I hope that I can have an easier time adjusting.

But most of all I miss our church and The First Academy, where Ashley went to school and Kyle would have gone. We had such a sense of family there and it's not easily replaceable. We enrolled Ashley into an A-rated public school this year and she's done really well academically. I just don't really have any connection to the families that go there because it's so large. I thought being the room mom would help, but it's just not the same as TFA where "everybody knows your name" lol. We're looking into a smaller private school for fall because Kyle goes to kindergarten, but I struggle with moving them again. There are moments when I think it would just be easier to go back to Orlando and put everyone back where they were, but that option as great as it seems, comes with a $35,000 ANNUAL price tag in tuition that we have a very hard time affording.

So back to my question - what's more important, the needs of the many or the needs of the few or the one? Right now I'm focusing on the one, because everyone else can adjust easier (I didn't say easily, but easier)... and even though my other two kids may have a hard time understanding my decisions now, later in life I hope they see the struggle it was to make decisions when JD has a whole different set of needs.