Sunday, May 27, 2007

Our Own Bumper Sticker (part three)

Many of you have patiently read the last couple of posts about our experiences as the parent of a child with special needs. And you guys have responded with some of the most affirming and supportive comments. I appreciate that very much.

In this last post, I want to give a "shout out" to Son17. Sure, we've struggled to figure out how to be good parents to a kid who came without an instruction manual. But Son17 is the one who really struggles.

He has many obstacles to overcome. One of the biggest, in my opinion, is that Asperger's Syndrome can impact the executive functions of the brain. I'm no neurology expert, but I know this it the part of the brain that helps a person organize. And Son17's lack of organization is apparent to everyone. The lost homework, the school papers in the wrong notebook, the deadlines missed because he thought they were at a different time, the clean laundry and the dirty laundry in the same pile. These are obvious and there are many coping strategies we use to help with those.

But the executive center of the brain also controls a person's ability to self-motivate. And you would not believe how many times teachers and family members have told us "if he would just try a little harder". But he can't. Not always. Trying harder requires self-motivation. And that just isn't always there for him. And I think that is one of the biggest challenges he faces.

But what I think of as barriers for him are not always what he thinks of as barriers. It is fascinating to learn how things seem from his point of view. I've shared a couple of those things in other posts. Easy Mac Breakdown pointed out just how hard it is for him to step outside the "rules" and estimate just a bit. And A Moment of Insight stopped me in my tracks as I realized he had a problem that I would have never even considered.

But he surprised me even more one day when he told me he wished he had Down's Syndrome. His one friend has Down's Syndrome and Son17 was wishing he had the same. Astonished, I asked why? His answer was that his friend looks like he has a disability. Because of that, people know that he does and so they don't tease him or nag him when he does something that seems different. But Son17 looks pretty regular, so people often forget or just don't understand the nature of his disability. As a result, he is sometimes teased or shunned as just being "weird" (his word, not mine). This brought to mind one of the most powerful DVD's I've ever seen as a professional and as a parent. Last One Picked...First One Picked On focuses on this struggle that Son17 has experienced over and over in his life. In an ideal world, that DVD would be required viewing for everyone working in the field of education.

We've all seen the bumper stickers that hang on the back of so many cars today..."Proud Parent Of An Anytown High School Honor Student". Son17 has made the honor roll a couple of times. But that isn't the bumper sticker I want. I want one that says..."Proud Parent Of A Kid Who Faced So Many Challenges And Still Was Successful A Lot Of The Time".

That might be a lot to put on a bumper sticker. So Son17, consider this your bumper sticker. We know how hard it is for you. And we admire every accomplishment you've made.

27 comments:

Andrea Frazer said...

For all of our society's talk about being open minded, we still have such a long way to go. I am RIGHT THERE with your viewpoint and think Son17 is lucky to have an advocate in you. And he will find his way because, like everyone else that has breath, he is deserving and made to shine in whatever way he is best for him. Screw everyone else and their judgements. GO SON 17!!!!!!

Charlotta-love said...

How about this one: Proud to say Son17 has made an influence on someone he never met.

Go Son17!

Em said...

mama p - thank you for your support!

charlotta - that is very kind..thank you.

Anonymous said...

Son17, my heart breaks to know the pain and the hurt you have and will go through because of your disability.

Unfortunately, people will always be blinded by appearances and you will always be misrepresented because of how you look.

Just know that somewhere out there is a blonde Canadian giving you virtual hugs and cheering you on.

And you too, Em.

meno said...

It's so hard to grow up anyway, much less with greater obstacles that usual. It's a testament to you both, and the rest of your family, that Son17 has made his wayso well this far.

KT said...

It's so obvious that you are a really supportive and loving father. It's inspiring.

You should get a bumper sticker too :)

Ruth Dynamite said...

I loved these posts. He sounds like a unique and incredible kid, and with you in his corner, he'll accomplish whatever he sets his mind to.

EsLocura said...

these have been wonderful posts. a loving, insightful, devoted familia. thanks so much for sharing.

Anonymous said...

After digesting this 3 part series, all I can say is that yours is one totally awesome family. For the bumper:
Proud Parent of One Awesome Kid!

I forget how many you've actually got, but change the One to whatever number...

whimsical brainpan said...

How about "Proud Parent of A Son Who Surmounts Challenges."

Son17 is blessed to have you as a father.

Chicky Pea said...

I guess I can see his point about the Downs Syndome. It makes perfect sense. It's like that old addage that it's hard to fix what isn't broken. If something is really wrong you'd think you would be able to see it, kind of like depression. You do have an awesome family.

Bardouble29 said...

Son17 sounds like a wonderful young man, with wonderful parents.

I wish society as whole would not judge people.

Anonymous said...

You know, this post is just awesome!!! I hope to be like you when my dd is that age. She's so young right now, and I have no clue what's in store for either her or me. But you give me insight into the things she might be thinking. I hope I have the answers.

Unknown said...

That's fascinating insight: if people could SEE his disability, then maybe they'd understand it ... I think people really should be much more understanding of psychological disabilities ... but they're not, even after decades of advances.

As for the bumper sticker, my wife won't let me get the one that says "my child was inmate of the month at county jail ..."

Jazz said...

We admire his accomplishments too. The daily struggle he goes through and his managing to get though is truly awesome. A lesson for lots of people. Thank you Em, and Son17

CS said...

I've enjoyed all three of these posts, and appreciate your willingness to share. Love the bumper sticker idea - he deserves it.

Attila the Mom said...

Your post gave me the shivers!

You know, I also wonder how much individual personality plays in executive brain function.

My little guy isn't functioning quite at the same level as Son17, but he seems to be almost a polar opposite. He can't stand disorder and is amazingly organized. He has all school deadlines in his head and is always prepared.

His biggest fear is to show up at class empty-handed, and believe me, that's caused it's own kind of obsessional problems! ;-)

SzélsőFa said...

oh, these moments must be the hardest. I mean ones like when Son17 said he wanted to have Down's...

Michelle said...

I want one of those bumper stickers, too!!! I would display it proudly on my car!! :)

Cinnamon Girl said...

Nice Blog =)

Thanks for stopping by

tkkerouac said...

You are an awsome dad!

Jocelyn said...

You've just made my heart even mushier towards both Son17 *and* you.

What a dude that kid is.

OhTheJoys said...

Again, I am so grateful to read these posts, Em. Thank you for writing them.

Jenster said...

I've seen a lot more words with a lot less worth on bumper stickers. I think your bumper sticker would be awesome!!

me and the other me said...

em,
tell son17 that one of the most brilliant and interesting (and horribly disorganized) people i've ever had the privilege to meet has aspergers. he's a former rocket scientist who now runs a kickass antiwar site. it's his ability to totally focus on a singular thing that has made him the unique individual he is today. give me different any day!
*ps- tell him he's also a lucky kid to have such a great dad. i wish all "my" kids could be so blessed.

Gretchen said...

I'm crying right now because I identify so very much. My son has some of those very same issues and is nearly 11. He has a TON of sensory issues and many even thought he had Aspbergers, as well. I posted about History Boy probably about the same time you wrote this. Did we just need to vent or what? :) I know that you "get it". I get it, too.

Blessings to you and son17 and the rest of your family. Because, despite all the high maintenence needs stuff we do with our sons w/special needs, we have other children, too, and there's always the guilt factor, there (e.g. now I need to do some major 1:1 time with Drama Girl). It's exhausting. It's painful. And I wouldn't trade a moment.

velvet said...

This is the most awesome thing that I've read in a long time. Your family is truly wonderful. :)