Monday, April 20, 2009

April is Autism Awareness Month



I cannot let the month of April pass without mentioning that it's Autism Awareness Month! Autism affects 1 in every 150 children. Those statistics have risen dramatically in the last several years.

When Kameron was about 18 months old we noticed that something was different about him. He lined his toys up obsessively. All kids line toys up, but he would take his cars into the kitchen and put one car in each square... exactly the same distance from each other... facing the same direction... in the same order... every time. When he wasn't looking we would switch 2 of the cars around. He would walk back in, stare at the cars, and calmly switch them back.

He was obsessed with these:

He took them everywhere. He could stack them up so fast and then nestle them back together again before you even knew what happened.





Eventually he lost the few words that he had. He was frustrated because he couldn't communicate his wants and needs. His meltdowns happened several times a day. If we were out walking he would get mad and do the "flop and drop". One day he dropped and I instinctively held his arm and his elbow popped out of its socket. It was awful. He used to cry so hard he would forget to breathe and pass out.

Kameron didn't like to be touched. He rarely liked to be hugged. He didn't want anyone invading his space or touching his things. He mostly played by himself and many times would shut himself in his room for hours... he lived in his own world. We would have to coax him out to come join us and get him to play with Kassidy. His obsession moved on eventually to anything round. He loved pool rings and would carry 3 in each hand everywhere he went. When we moved here from California he stole our kitchen clock while we were unpacking. He carried that thing around everywhere.

He had major sensory issues... he couldn't stand anything sticky, play-doh, sand, or anything like that. He LOVED Rice Krispie treats but couldn't stand to touch them, even if they were wrapped in a paper towel. I used to feed them to him, it was just last year that he was finally able to hold one on his own. He had an aversion to a lot of different food, different textures, colors, and even smells would make him gag and throw up. His food list quickly dwindled down to 5 or 6 items.

Before we left California I voiced my concern to his pediatrician several times. He told me "He's a boy, he's a second child... give him time. He's fine." Mommy instinct told me he wasn't. When we moved here in February 2004,I was 7 1/2 months pregnant with Kennedy. In March, I went to my first OB appointment at Fort Campbell. I knew something had to be done for Kameron, but I didn't know where to start or who to ask. I walked onto the elevator at the hospital and there was a big sign:

Are you concerned about your toddler's development?
Call us!

So, I called the number. They brought him in and tested him. He was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS). It's on the Autism spectrum right under Aspergers. When the developmental pediatrician told us the diagnosis, she was very sensitive. I think she expected us to fall apart, but really, it was a relief for Frank and me. We had known something was going on with Kam for a long time and to us this was a pass to get him the help that he needed.

We quickly enrolled him in Early Intervention where he received Speech and Occupational therapy. When he turned 3 he transitioned into the special needs preschool in our district. There, he thrived. Eventually he just seemed to unlock. He started talking more and more and then not long after he turned 3 1/2, he started reading.

Today, Kameron is in the 1st grade. He is reading on a 7th grade level and comprehending on a 4th grade level. He loves to read, write, make up stories, and spell. He is excelling in every area academically. His meltdowns stopped once he was able to communicate, but he still gets upset easily and doesn't quite know how to control his anger. We have to remind him daily to make good choices. He doesn't have the common sense that other kids his age seem to have. He's not obsessed with the stacking cups or round things anymore, but he still doesn't like his space invaded, and he gives and receives hugs sparingly. His social skills are not quite up to par, but his friends view him as a leader and he's well liked at school. He's come a long, long way and he's working hard on overcoming his sensory issues.

I love to watch Kameron's mind work. I love to see the things he comes up with. He's so creative and does things so out of the norm. I think this is one of his best qualities and I can't wait to see what he does with his life. Whatever it is, it's going to be amazing!

So, in honor of Autism Awareness Month, Kameron has agreed to do a Q&A session on this blog! For the next week you can leave a question for him in the comment section here. Anything you'd like to know about him! Next week I will ask him the questions on video and post it all for you to see! Don't miss this chance to get to know a really special kid!

38 comments :

Emily Doss said...

as far as the stacking cups go there is a sport for that now- maybe he could get back into it. :)

www.speedstacks.com

grecia said...

Kameron,
What was your most favorite thing or activity at Disney World?

Amy said...

Thank you for sharing this Renee! Kameron sounds so much like Cooper in so many ways. I hope we are lucky enough to have the same sucess as you did. I can't wait for some talking :) Does Kameron remember when he couldn't talk? I wonder if when Cooper grows up he will think back to that time when he was unable to communicate.

-Amy

Jen said...

Thanks for sharing, Renee!

Now, questions for Kameron!
Let's see....

1. What is your favorite thing about your sisters and brother?

2. Do you like being a big brother or little brother better?

3. What is the funniest joke you know?

Janet said...

Renee, thanks for sharing about autism. It is the hardest thing I have had to deal with in my life. And if it is hard for me -- how much harder is it for Luke and Kameron, who deal with it every minute of every day??!!

SueEllen in Dallas said...

Kameron, I love to read also, and I was wondering what your favorite book is and why.

Lea White said...

Wow, I had no idea. You guys sure are amazing!!!

Okay so for questions:

- What is your favourite book to read?

- What is it like to live where you live? We lived in South Africa before and are now living in New Zealand - I have never been to the US before.

Lea White
http://whitesinnz.blogspot.com

Lynn said...

I really, REALLY wish drs would listen to moms....would save a LOTTA grief!!!!!!!!!!!
Know that I'm here praying!
Romans 15:4 For whatsoever things were written aforetime were written for our learning, that we through patience and comfort of the scriptures might have hope.
Prayer BearsMy email address

Bobbi said...

Wow, he has made such great progress! You must be so proud of him! WTG trusting your instinct. Parker had some of those blocks too and loved them. How is Kamerons eating now? Is it better? Parker likes cupcakes but doesn't like to get messing either, I have to feed them to him also, lol.

My Three Sons said...

Carson was also tested for Autism and they decided he was fine. He just has the sensory processing disorder. So we have to work with him touching different textures and eat hot/cold, soft/ rough foods.

nicki mcfadden said...

Kameron what is your favorite subject in school?

Anonymous said...

Oh my goodness - this brings back memories! I love to see how Kam's mind works too...especially when he's drawing, and what I see in his picture is totally different than what he tells me it's about - but after he tells me, it all makes sense! I have so many questions, but I think the one that bothers me the most is: Kam, I know you don't like to be hugged very much - so what is it that you don't like about getting hugged? Is there a way I can hug you that would be better for you?

Love, Grandma

Lisa Turner said...

Hello Renee. Thanks for the post.....you always teach me so much!

I have had the opportunity to meet you Kameron, and I think you are one great kid!

Okay, now to my questions....

What is your favortite food?

What do you like most about Kassidy, Kennedy and Keeghan?

Sorry, it that is too many questions. If so, you pick one you want to answer.

Big cyber hugs, Lisa

Lyndi said...

Feeding off of Grandma's comment....Is there a way to make people understand what touches you are comforbtale with? My son is the same way, but I find that people would rather force a hug than try and find alternative methods of affection. Thank you, Renee's mom, for looking for another way!!!! I wish other grandparents would do the same.

BobbyCarol said...

What a great idea for a blog!!! I might just swipe it (not the video Q&A part...doubt very seriously either of my kids would sit for that lol!). LOL!

I'm glad to hear Kameron is doing so well. :)

Kameron--What is your favorite game to play?

Joy said...

Kam sure is a great kid! He is blessed to have you and Frank as his parents! My niece is 5 and I feel very strongly that she has some form of autism. I've tried doing some research on my own, but her parents refuse to look into any further. They feel that as long as the doctor says she is ok, that she is fine. I'm just hoping that one she starts Kindergarten this year that the teachers pick up on her unique qualities and point her parents in the right direction.
The Philadelphia Zoo celebrated Autism Awareness this weekend and we happened to be there. It was great to see so many people with their "puzzle pins".

Rachel said...

Kameron, What is your favorite food?

MamasHood said...

Thanks for sharing that post. Kameron was such a cute baby/toddler. (For the record he is still cute!)

Kameron,

What is the coolest thing that has ever happened to you?

What do you want to do when you grow up?

♥Lisa♥ said...

ok Kameron, I'm going to give you a Cody question. He's 9 and in the 3rd grade. He's at school right now but this is the kind of stuff he asks a lot. If you could put two animals together which ones would it be and what would you call it??

mom2natnkatncj said...

What an awesome idea Renee. Kam might be wishing that he didn't agree to do this though ;).

Okay, lets see some questions though...

Do you have a favorite color? If so what?
What's your least favorite color?
Can you teach Kaitlyn to read and spell ;)?

Casey said...

So glad to know Kameron is making great progress!

Anonymous said...

Kameron,

If you could go one place with just your Mom and Dad, where would you go and why?

Lori Kyle

Anonymous said...

Renee,

Your Mom left a comment/question about hugging Kameron and then someone else touched on it as well, but with Tessa, she doesn't like to be hugged either. BUT, if we ask her if we can hug her, then she is more willing to be hugged. She doesn't like it when she doesn't see it coming. You've probably tried that with Kam, but maybe that might help someone else that deals with the same thing. Just a thought!

Lori Kyle

Courtney said...

KAMERON-
YOU ARE SUCH A COOL KID!
YOUR ART IS REALLY GREAT AND I LOVE YOUR IMAGINATION.

HOW DO YOU LIKE BEING THE ONLY BOY WITH ALL THOSE SISTERS?

WHAT DO YOU WANT TO BE WHEN YOU GROW UP?

datri said...

It IS such a relief to have a name to put to something that's "not quite right". We used to always say Laurie was on the edge of normal and it was nice to have some sort of answer behind it.

If she were to be evaluated now, I doubt that she would still have that PDD-NOS label. But she DOES still have social and anxiety issues and is still a bit quirky. So I'm glad we still have the "label".

Anonymous said...

I love this post! I don't know if this is a question for Kameron or not, but I'm curious... does he know he has PDD-NOS and can he explain to you guys how he feels when he's feeling "off" (for lack of a better word - thinking of when he doesn't want to be touched or why some things feel funny to him)? I've always been curious about people with some forms of autism being able to explain how their world works in their own words and wondered if Kameron was able to do so at this point... even just how it feels when he doesn't want to be hugged or how a rice krispie treat felt to him.

So, here's a question just for Kameron:

If you could have any super power, which one would you have and why? (Personally, I'd pick being invisible so I could spy on people. :) )

Natalie

Maureen said...

wow! Thank you for sharing Renee. I am glad that Kam is doing so well now; you guys are such great parents!

Gayle Nobel said...

You have a beautiful family and beautiful attitude! I just discovered your blog. I am mom to Kyle, age 25, with severe autism and other issues. I am also coauthor of "It's All About Attitude" Loving and Living Well with Autism (an inspirational book sharing support and wisdom).

Gayle Nobel
http://www.autismwithattitude.com

JennyH said...

I loved reading about Kam. Max was obsessed with those stacking cups too when he was little. He also lined his cars up all the time- facing the same way, always touching. He outgrew those but he does still have his quirks. I think Ds has similarities to autism.

Kam may be overloaded by all his questions. Can hardly wait to hear his answers.

Elizabeth said...

I wasn't originally going to ask a question, but I read today that you really want to answer them so....
What's something that your parent's do that your friends parent's don't do? Anything fun or silly or maybe a rule they have?

Janet said...

Question for Kameron --

Hi Kameron, I am the mom of a 6-year-old boy (he is in kindergarten) who has autism. He doesn't talk and there are only a few foods he will eat. Do you have any words of advice for me?

SSquyres said...

Hi Kameron,

Do you speak any languages other than English? I am learning American Sign Language and wondered if you were learning it too.

Mom of Army Brats. said...

Kameron,
If you could give your mom a nick name what would it be?

Maui Mama said...

Aloha from Maui Kameron,
My question for you is:
What was the HARDEST homework assignment/project you have ever had to do?
What was the FUNNEST homework assignment/project you have ever had to do?
Have you and your family ever been to Hawaii (Maui)together?

I'm so glad to read about how well you are doing, you make me proud too :)

Debbie (Tiana's mommy)

Anonymous said...

Thank you for sharing. I am just now sitting down to my computer to catch up on things and I saw this. Our son, Kelly Patrick--
4 1/2, was just recently diagnosed with Autism. He also happens to have Down Syndrome. Our biggest clue to get him checked out was the fact that he, too, lost the few words that he had. He also stopped doing his signs. So we are working to get him into a school here that will give him more intense therapies that he is getting now.

Thanks for being such an inspiration on so many levels.

Colleen H.

Just Being Me - Cathy! said...

Hi Renee and Kameron from chilly Sydney, Australia!

Here's some questions for you....

Question 1: What's your fave TV show?

Question 2: Would you ever like to travel to Australia someday? What would you like to see the most?

Question 3: Describe yourself in three words.....

Thanks for allowing me to ask you questions... its a wonderful idea!

Have a great day..... you two!
Hugs Cathy & kids xxx

~Erica~ said...

Kameron.

I help kids all over with special problems they might have. How do you think Kids need help the most?

Renee,

I am a therapist and I always am curious to hear what kids think kids need and I use that to spur me on to better therapy. I do work with kids on the autism spectrum too so Kam's words would be so priceless to me! :)

--Erica Lewis

Cathy said...

Oh my Goodness Renee, I have read about a few other kids with PDD-NOS but never did the kids have so many similar things to my Matthew. I’m like, yep, aha, hmm, Oh my goodness Cam was reading at 3.5, Matt was 4years. He was sounding out words figuring them out at 3.5years.

I’m going to post you a link privately to a site where I have been receiving some help from other parents. If you ever have time ( I know you have a lot on) you can have a read through.
Matt has all the sensory stuff to.
Our Pead wont give an official Dx, but said if she gave him one that is what it would be. Sadly here in Australia, it’s hard to get a Dx, it’s all about money…it’s long and red tape but I can still access all the same help for Matt at school and he went to a Early Intervention school (same one Aden si going to)
I’ll post to you later tonight.

Cathy