08 April 2008

April Is National Autism Awareness Month

Many of you who have been reading my blog for a while know that my 12-year old son was diagnosed with Asperger's Syndrome when he was 6. In many ways his diagnosis was a relief. I always felt my son was just a little bit quirky but could now see that he was having great difficulty fitting in at school. Having something to call it made it real, and meant it could be fixed, right?

Understand that I really believed I had the only baby who got more fussy when he was held, yet if I wrapped him up tight in a baby blanket and placed him on the floor, he would stop crying. Most babies needed quite to sleep - the smallest sounds waking them up. Mine? One day when nothing was remotely coming close to soothing his crying fit, and I couldn't take the persistent noise any longer, I decided to vacuum to cover up the sound of the crying. He immediately fell asleep. It seemed my baby found loud, continuous and predictable sounds soothing.

As a toddler, little things would set him off into huge meltdowns. A seam on the toe a sock (he often went without socks even during Minnesota winters) a tag on the back of a shirt (if I didn't cut them out immediately he would pull on them until he ripped the shirt) or a different route home from the grocery store. Any of these things could be cause for my 2 year old to throw himself violently on the ground and start banging his head.

The daycare told me he was dangerous to other kids. They told me he had behavioral issues - he would sit in a corner and rock for hours - likely because I was a single mom with a lack of proper parenting skills. They told me if he didn't potty train before he was 3 they were going to have to ask me to remove him from the daycare as he was so much bigger than the other kids his age and was posing a physical danger.

Sometimes, during these very lonely and tiring days, we'd go to the local home improvement store and watch ceiling fans. I could put him in a shopping cart on his back and he would watch the fans spinning around and around until he fell asleep.

When he started school at 4, he had a terribly difficult time. The transition to a new school - a new after school care program - left him withdrawn and angry. As time went on and he adjusted to the changes, he began to blossom. He had a gift for music and at 4, could play back simple tunes on the piano that he had just heard on the radio. He had a fascination with numbers and patterns and could easily pick out what the next object should be even in a long series of items. There were still problems. A thunder storm, a need to stay inside for recess due to rain or a child missing from class could again be cause for a melt-down. Often he would hide under a desk, refusing to come out. His teachers were at a loss.

Due to the limitations of the Magnet School he was attending (it was pre-K and kindergarten only), he had to start yet another school in first grade. This was our neighborhood school. We spent much time there before he started school in hopes he would be comfortable and transition more smoothly. He didn't. The elementary school had a student enrollment of over 900. He was overwhelmed by the relative chaos of the daily school activities. His performance and behavior began declining rapidly. Within months the school had contacted me requesting he be evaluated for Special Education services.

I had an independent evaluation done at the same time the school conducted their educational evaluation - both resulted in the same findings - Autism Spectrum Disorder, specifically Asperger's Syndrome.

It's been very much a roller-coaster ride since the first days of his life. At 12, he's an incredibly bright young man who consistently scores above the 90th percentile on tests, yet he's failing 3 of his 8 classes. For the most part, he can now look at people when speaking to them, but if he gets flustered he just shuts down. In addition to his piano/keyboarding skills that are self taught, he started playing the oboe in 5th grade. He continues to have an affinity and natural talent for music. He can look at a car going the other direction on the tollway at 85 mph and tell you the year, make and model with amazing accuracy. Most of the time, he can even tell you engine size, torque and horsepower. He plays catcher in baseball and has the ability to focus so intently on the pitched ball that seldom does a ball pass him. I still cut the tags out of his shirts, he still refuses to wear socks and he can still watch a ceiling fan for hours. I might be a bit biased, but I think he really is a neat kid! He cannot (and should not) be "fixed", but he should be understood and supported in any way I can.

April is National Autism Awareness Month. I am not one who usually asks people to support a cause - to click on a link - but this is quite personal to me. Chevy is partnering with Autism Speaks to help create awareness of autism and the effects it has on our families. If you have a few minutes, please visit Help Chevy Help Autism and watch the short virtual tour of the new Chevy Malibu. Chevy is donating to Autism Speaks for each viewing of the video. It's one small click that can make a big difference for autism and for those of us whose lives it touches daily.



42 comments:

Schmoop said...

They don't stop by often now, but I had two or three readers who have children with Autism.

It is a tough raod to hoe. But the kids are great and the parents are a testament to strength, perserverance, and unconditional love.

Good luck to you and your lovely kid Dana, and by the way, I HAVE to cut the tags out of my shirts. Tags annoy the hell out of me. Cheers!!

Jeff B said...

You have a great attitude about your son. He is not broken and doesn't need to be 'fixed' as you pointed out.

He sounds like a pretty remarkable young man to me.

Unknown said...

Thanks for this post and in information.

Blessings, Dana!

captain corky said...

He sounds like a great kid! Thanks for sharing this with us.

R.E.H. said...

Autism Awareness is a good cause. There are many misconceptions floating around there about autistic children.

I think especially among those of us born before the 80's - before there was any real knowledge that such a thing existed.

Your kid sounds like a great guy, and keep encouraging that baseball playing. Maybe he'll make the majors and play for the Braves some day, and I'll be cheering him on!

Dana said...

Matt-Man, unconditional love flows freely, strength and perserverance are sometimes harder to maintain!

Jeff, I only wish everyone saw things that way. He really is just a kid!

Nick, thank you!

Dana said...

Corky, most days he is a great kid! But like all kids, some days he's just a regular PITA!

R.E.H., he's actually built more for football (at 12 he is 5'-8" and 190 lbs), but hasn't been able to play yet because he is "too big". We'll have to see where his sporting career goes.

buffalodick said...

Checked out the new chevy per your request. I read casdoks' blog regularly, and have learned much from it...

Dana said...

Buff, thank you! Like I said, I'm not real big on sending people to advertising sites, but Chevy is really stepping up to the plate on this one.

... and thanks for mentioning Casdok's blog - I'm headed over there now to check it out!

Doc said...

Being a new father myself I have taken more notice about things such as autism, it's scary (terrifying actually) that 1 in 150 children are diagnosed every year.

Unknown said...

I watched the video, and you know, that is a pretty nice car! I wish they said what the MPG was, but it's not like I can get a new car right now anyway! But a girl can dream.

Your son sounds so amazing! I don't know that I would want to "fix" him either. He is brilliant just like he is, and I would LOVE to see him play the piano. Does he mind being video tapped? And man, I wish you lived close to me, I bet he could teach me way more than my books do about playing piano, which has always been a dream of mine!

Thanks for this post. I love reading about other people's children. It makes the person seem so much more real, ya know?

As American as Apple Pie said...

Great post and personal story about how autism affects your life. I think is is one of the most underdiagnosed and misunderstood areas in children today. Although, it IS getting better with the help of people like you spreading the word and organizations like Chevy sponsoring it. People are becoming more aware of the signs to look for and, if caught early, have a better chance of controlling it.

Your son seems like a wonderful young man and I applaud you for being his advocate in helping make his life the best it can be.

Dana said...

Doc, it is terrifying, but it really isn't the end of the world *wink* As I say about my son, he doesn't just march to the beat of a different drummer, he started his own band!

Bina, thanks for taking the time to watch the video. I've actually been looking pretty hard at this car - the "base" LS model claims 22/30 mpg and the LTZ model (with a 6 cylinder engine) claims 17/26 mpg.

I think my son's music abilities are what shocked me the most. Walking in to pick him up from daycare and hearing him play a short classical piece - by ear - was quite a shocker!

Apple Pie, one of my (many)frustrations has been that you can't see autism when it's on the mild end of the spectrum. Many people just assume he's a child that hasn't been parented well (including my husband).

Christo Gonzales said...

thats so cool about music... he has skills and thats what counts..

Dana said...

DB, he likely will just be seen as a "geek" as an adult. He is certainly capable of leading a "normal" adult life, it's just a challenge for him to learn the social skills that so many of us take for granted.

Leighann said...

I never knew C played piano! Some of the most beautiful music comes from the piano ;)

Dana said...

Leighann, I've actually encouraged him to take lessons, but he prefers his method of playing by ear with no rules, and I like the fact that he is playing, so I let him be..

Anonymous said...

This is a great post. I am amazed by your son's musical talents. What a proud mama you are. Thanks for making us all a little more aware. Your son is so lucky to have you. You understand that he is who he is, and that he is not broken. Parenting constantly presents us with new challenges and I think that when we accept these difficulties and embrace them for what they are it teaches our children strenghth. Saying that your son is not broken is beautiful. He just requires extra help adjusting to changes sometimes. Because you have such an understanding of this situation I am sure that it helps to make things easier for him when changes arise. Now, I am going over to watch that video.

Michael M. said...

Bravo Dana. Thanks for sharing. I read another blog of another amazing mother with a child with Down's Syndrome. (http://weddingsx3.blogspot.com/) and am endlessly impressed with yours and hers advocacy and character in raising your kids.

Your son is a lucky duck. :)

Ken said...

Well golly gee, that paints a new picture of you in my eyes! Thanks for sharing that with us. You and your son no doubt still have a long road to travel. I wish you both all the best!

My wife is very happy with her 2007 Malibu

Dana said...

Amber, thanks for stopping by and for the wonderful comments!

Michael, thank you! I've added Weddings x3 to my Reader list. Now she is an amazing mom!

Micky, there is always much more lurking just below the surface. The odd thing is that I find writing these types of posts far more difficult than posting an HNT pic!

Anndi said...

No wonder I love coming here so much. Your love for your son permeates the post. And you're right, he doesn't need to be fixed.

Thank you for sharing an honest account showing that you can have a child who is faced with challenges but can still thrive.

SMOOCH

Dana said...

Anndi, my son has been, from the first day I knew I was pregnant, my priority in life. Days are good, and days are bad, but I love him unconditionally each and every day!

Jahooni said...

Jenny McCarthy is a spokesperson for this cause. Her son has it as well and really opened my eyes to the disease when I saw her on Oprah.
Thanks for sharing and making us all aware. I will support your cause 100%. I shall click over there now.
oh and thin mints are on their marry way. Give some to your son, don't hog them all!

Tink said...

What saddens me is that this information wasn't so readily available back when your son was little. You and he had to instead learn by trail and error what worked, with the falsely accusing eyes of others on you. Bless you and your son. I think this cause is a great one.

Librarian Lee said...

Wow....it's been that long...He should still be just a bit older than toddler years :) How lucky you are...and...you made me want to SEE THE TWO OF YOU!!!

Maggie is being married on Aug 9th..meet me in Indy?

Librarian Lee said...

And WAIT! You've been in my house! Did you not see it? It was EVERYWHERE...wow...okay...how did you miss it?

Biscuit said...

My son is 9 and was diagnosed right when he turned 5, although I knew by the time he was 3 1/2. Quite familiar with the roller coaster ride!

Dana said...

Jahooni, thank you! Are you not aware that Thin Mints have an exclusion under unconditional love??

Tink, I often wonder how different things might have been had we had a diagnosis even 2 years earlier. It just wasn't on the radar of most pediatricians, and being a single mom, parenting was always a "better" explanation!

Lee, I think Cam was 4 the last time you saw him - you'd never even know it was him. I'd love to meet in Indy for the wedding!

Dana said...

Biscuit, funny how we, as parents, know something just isn't right, isn't it?

MrRyanO said...

Dana, as you know my 4 year old son has been diagnosed with PDD-NOS.

I can't believe how similar our children are! From the tags on the shirts, the meltdowns/tantrums, to baseball! Last summer when he was 3 he could hit a slow curve ball thrown from 50 feet away. He also has a great interest in music, primarily the piano. He has taken to the computer rather well and puts many adults to shame! LOL!

Everyday is a challenge for us as a family. Sometimes I feel that I've been robbed of some of the joy of having a baby and I worry how other children will treat him as he grows up. Although, at this rate he's going to be 6' 7" and shouldn't have a problem with too many people.

Most important advice I can give, especially to any new parents, is that you know your child better than any doctor ever could. Trust your judgment and if you feel that something is out of the ordinary then bring it to the attention of your Pediatrician. If they won't listen or play it off as being over-worrisome (is that a word??? LOL), get a new Ped that will listen to you.

As you know I've been working to get something put together to benefit AutismSpeaks which is a great organization.

It does sound like your son is a great guy! Thank you for sharing. :D

Anonymous said...

A seam on the toe a sock (he often went without socks even during Minnesota winters) a tag on the back of a shirt (if I didn't cut them out immediately he would pull on them until he ripped the shirt)

My daughter did that!! Still will if the tag isn't just right. She's lucky she lived! I nearly kiled he over it!
Take the tour?
Click a link?
you know me!
I Gotter Dun!!!!!!

Dana said...

RD, they are amazingly similar, aren't they? I know that my son has had struggles socially - I also know he has an amazing heart and gives so much of it to others. I am now seeing him start to get some of that back and that is extremely rewarding.

Thank you for sharing, and if you need any help with your project, you know I share your passion!

Dana said...

SS thanks for your support!

Anonymous said...

Our 9YO, who is brilliant and funny and... slightly off, you know... is about to start the evaluation process... because he is a neat kid, cannot and should not be fixed, and should be understood and supported any way we can...

Real Live Lesbian said...

Tags annoy the shit out of me, too. I think you can mark that one off this list. It's a HUMAN issue!

Anything for you. I'm off to watch the video.

I bet his being such a neat kid is because he has such a neat mom. Just sayin'.

Kimmie said...

Dana...I worked with children with Autism...mostly teenagers. I have experienced first hand many of the experiences you described. The noise, fans or the steady movement of other objects, any change of routine. The list is endless. You are so right, individuals with autism need not be fixed. They need love and support, understanding and patience. I know this can be very difficult and taxing on parents. You sound as if you have a very good grasp on what your son's needs are. He is exceptionally talented, and sounds very well adjusted...I am sure that comes from you constant love and understanding. One thing I felt while working with autistic individuals was their love. They give it so freely. I was there to help enrich their lives in the group homes I worked in. But, in truth...I have to say, for me it was quite the opposite...MY Life was the one that ended up being very Blessed and Enriched from my day to day experiences with these special children. :-) May Blessings Be Abundant Dear Dana for you and your son.
Hugs,
Kimmie

Anonymous said...

My Cousins daughter has Autism and she is So smart! She gets things that most people would have have a clue to.. She is exceptionally smart when it comes to numbers!

I will click and I will support!
The Love you have for him is soooo Wonderful and anyone can see it!
I Love the Piano!

Single

Lu' said...

Headed there now Gal; peace.

Dana said...

Irish, the evaluation process can be a challenge in itself. Hold on!

RLL, thank you *blushes* I feel blessed to have him!

Kimmie, thank you! It has been quite taxing on my relationship with my husband (not my son's biological father) and may likely be a factor in it demise. This isn't an easy path, but it is a pretty one!

Dana said...

Single, thanks for stopping by and thanks for the support!

Lu, thank you!

Mom26children said...

Hi,
We have 5 children with Autism. One of them has the Asperger's diagnosis. She was the easiest baby ever...probably an early sign. She has never given us an ounce of problems...except now with the teenage angst. Autism is such a broad spectrum. In our home, it is a rainbow.
www.trusera.com