Monday, October 31, 2011

What's He Like?

If you know me, then you know that I love talking about autism. I feel like JD's diagnosis opened my eyes to so many things that I never knew existed. Like for instance, most people know the five senses - sight, touch, taste, sound and smell. But did you know there are actually there are two more? Proprioception and vestibular. Don't feel bad - I didn't know either until I was an autism mom.

Normally when people find out my son has autism they ask me a lot of questions about what he's like. How does he act? What makes him different? Does he talk? I really love it when people ask because it gives me the chance to not only tell them about JD, but also teach them a little bit more about what I've learned. Here is a little insight to life with autism:
  • JD knows no strangers - he will say hi to the person passing by in the grocery store until that person responds. After about the 5th "hi" with no response, I want to scream at the person, "just say hi back!!" cause he won't stop until he does. He's also a "flight risk" meaning that he has no concept of being lost or hurt so he could run away at any time without the ability to get back.
  • He loves to chatter when he's nervous or excited. He'll run up to you and talk to you, but you have no idea what he's saying. They call that "jargon" - it's speech, but it's not understandable. It's like an effort to communicate when he doesn't know what he's trying to say.
  • We've finally gotten to the point where he can answer yes/no questions... normally when it's no, it's NO!! (insert the really loud screaming here). But most questions he can't understand - like what did you do at school today? or what's your favorite color? In this instance he'll just repeat the last word I said to him, which is called "echolaila." He does this because he knows I'm asking a question that requires a response, but he doesn't know how to answer it so he just repeats the question.
  • He has what's called "food aversions" meaning he's super picky about what he eats. Right now his diet mainly consists of strawberries, bananas, chicken, goldfish and popsicles. He hates cake, candy, ice cream. Luckily he does like sprinkle cookies so we make sure we bring some to parties so he still gets a treat like the other kids.
  • He LOVES routine and even though I'm a Virgo who also loves structure, this one drives me insane. Things have to be the same, day-in, day-out. If you change it up, there will be a meltdown, and I'm talking screaming, crying, biting, hitting, skin-turning-red meltdown. Here's an example - our evening routine. JD has to take a bath, watch a cartoon (the exact same one we've seen every night for a month), then we have to read two books - Dinosaur Parade and the Going to Bed Book, then we sing the same five songs, we cuddle and then he can finally get in the bed. If I try to take any of those items out of the equation, or do them out of order, he loses it. We live and die by routine at our house and I hate anything that will make us vary from it. His routine makes him feel safe, so if we change it, it totally rocks his world.
  • You learn to expect the unexpected. JD can be thrown off by the littlest things. The other day I was running late to work and I didn't let him stop at the fish tank on the way into his classroom, I tried rushing him and BAM! it's over - he's lost it. On the floor, hysterical, biting his hands to express his anger at me. I felt horrible because I forgot that's his morning routine - he's gotta look at the fish tank for at least a good minute before we move onto the classroom - no if, ands or butts about it, unless you want to ruin the day.
There are so many other little quarks about autism, and at first it's completely overwhelming. But little by little you get used to it and adjust. The good thing is that you just learn as you go and try to roll with the punches. The reality is that even with all these little issues, JD is such an amazing little boy. Every time I turn around he's making me smile - like when I came home from work today and immediately he said, "mommy - wanna kiss?" OF COURSE I DO! :)

Sunday, October 30, 2011

It's Been So Long!

Where has time gone? I can't believe November is around the corner and I haven't posted a blog in months! It's been an eventful summer at the Graham household. We moved in July (yes, the hottest month of the year!) so that we could be closer to my job, the kids started a new school, and I'm still trying to get all our ducks in a row - lining up a new pediatrician, finding new therapists, transfering JD's IEP from one county to another.... I feel like there's just never enough time in the day.

I saw a post on Facebook this afternoon from the Orlando chapter of Autism Speaks and I realized that the Orlando Walk is just two weeks away! On Saturday, November 12, our family will be out at Cranes Roost Park in Altamonte participating in the annual "Walk Now for Autism Speaks." I set up our Team page and I appreciate any support we get! My goal is not just to raise money, but to raise awareness. Since JD was diagnosed almost two years ago, I have met some of the most amazing children and families with autism. This "invisible" disorder is something that can make you feel very alone in the world, but I feel that education is the best way I can advocate for my son.

My goal in November is to write a new blog each day talking about being a parent with a child on the spectrum. I hope you'll come back to read more! JD has made such huge progress from the day he was diagnosed in 2010 to now and I am eternally grateful to the family, friends, therapists, teachers, coworkers, neighbors, EVERYONE who has supported him. And since pictures really can really say more than any words I will share these two for you:

This is JD at his 2nd birthday party, the day before he was diagnosed. He was scared, overwhelmed, confused, begging for help through his big blue eyes. Looking back it's clear at day...
Now look at my handsome little man - he's so confident and happy. Everyday he takes a few more steps forward and I'm so proud of him!