Erik Quinn: The Heart of a Family: Disability

Friday, March 09, 2007

Disability



This movie was shot at the park near my parents' house. You can hear them in the background cheering Erik on with grandparent gusto. I couldn't believe this was my son when I saw this the first time. Erik still struggles greatly with ascending and descending steps and will just crawl on them to get from point A to point B when there is no hand to hold onto for support. My heart breaks every time his therapist works with him on our stairs. It's just normally very hard for me to watch. Imagine my surprise when I saw this! Go, Erik Quinn!

From watching this movie, you might be able to tell that Erik has a hard time determining where the edges of things are. The little spasmodic step up he does into thin air at the top of the slide illustrates my point. He does this a lot. For this reason, he is generally not completely comfortable being atop a platform like this. He knows the edge is there, but the information his brain receives from his eyes seems to be confusing. He will stop miles short of any unfamiliar edge and slide along on his bottom instead. This kind of thing is something I described earlier as one of his newly-emerging skills to compensate for the weaknesses that go along with Williams syndrome. His brain does not process things the way we do, so he simply learns another approach in order to accomplish what he desires to do. It works!

I readily classify Erik as disabled for medical purposes and to qualify for the services we receive. I do not have a problem with that word. However, I believe the following story speaks volumes about what I see when I look at Erik. A couple weeks ago I parked a healthy distance down the street from Erik's school and was walking him down the sidewalk when a therapist spotted us and said, "We leave parking spaces open for you guys in front so you don't have to park so far away!" Without thinking, I blurted out, "Erik's not handicapped! We like to walk!" I laughed long and hard about this later. There I was walking down the street with Erik, a little boy going to special ed class who has no clue where the edge of the curb is and staggers along in plastic leg braces while muttering on and on about wheels and threatening to take a digger every fifth step. What a sight we must have been! To me, we were having a perfectly normal, happy morning. Any handicap he demonstrated at the time was completely invisible to me. Every week I arrive plenty early so that Erik and I have that walk together and he can drink in all of the sights of the vehicles and life around us. Once he is concentrating on heavy equipment operating nearby or watching birds streak across the sky, he lurches along at the speed of molasses in January and sometimes repeatedly crashes to the ground. However, I compensate for this as well by arriving early so we can enjoy the journey. We get there -- and on time! As my pain recedes, the way I visualize Erik and how we fit into the world is definitely shifting into something more positive.

Yes, my son has a truly devastating disability, but I use that particular word to our advantage when it's appropriate and pretty much put it away when we are living our lives. I'm thankful we have a genetic test result to tell our story to insurance companies and medical facilities so that there is little need to explain anything. I'm fully aware of what he has trouble doing, and I now watch him learn to use what he can do to accomplish what he needs to in his own time. If there's one thing Erik has taught me, it's that good things come to those who wait! Erik is much more than a test result or a handicap to me. He's my ERIK through and through, and most of the time that is all I see!

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12 Comments:

Anonymous Gua said...

Oh, honey!

Love, Mom

11:04 AM  
Blogger Every minute counts.... said...

Would you just write a book! I would buy it. You have such a good way of writing down the feelings that go along with being a parent of a child with a disability. I agree whole-heartedly with what you have said. Abi takes forever to make it to the car..we stop and pick flowers, chase bugs, look for birds...we just leave a little sooner so we can. She shows us how to appreciate life and not miss the things that mean the most. A friend of mine who lost her son to Leukemia 2 yrs ago has told me the same thing several times. She got mad at him the day before he died because he wanted to look for a certain toy car to take with him...she found the car a few weeks later and told herself she would never rush her other kids...he was teaching her patients and she wasn't willing to learn at the time.Just like the book Emerson's mom quoted...what are we racing for anyway?
noel

12:19 PM  
Blogger kathi said...

I can't get it to play for me, but I loved the read. He's got your strength and attitude. You're a great role model for him. I'm not giving up on this darn video. I'll clean up my cookies (lol) and come back.

12:42 PM  
Blogger kathi said...

YAY!! He did great, and saying he was 'good'. Precious!

12:47 PM  
Blogger Miss 1999 said...

I agree with every minute, you should write a book. You always have such uplifting posts, and such a positive attitude, dispite all of the adversities that your family has faced with Erik's illness. He's a thriving child, and loved so much. God Bless you, all! *hugs*

1:00 PM  
Blogger Lisa R said...

I LOVE THE MOVIE!!!!!!!!!!!! His little voice is just so cute you are entering a great stage I love it at the playground...

You make me laugh I love ya :)

1:38 PM  
Anonymous Aspen said...

I am now bawling! You are so right. Having Daven gone this week, has made me more aware of how much I need him. WS aside, disability aside, struggles aside...he is my angel. And I simply cannot do without him.

LOVE YOU BOTH!

4:23 PM  
Blogger Kerry said...

I need to buy a video camera.
I love listening to Erik! He is too adorable. He acted just like my nephew who is also 2.

Your post is so on target. People often give me sympatheitc looks with Brady... why???? There's really no need. He is my son through and through.

5:37 PM  
Blogger Rosemarie said...

You're amazing, and this post shouts how far you've come! Again, what a courageous woman.

It seems you and Erik have progressed together.

Congratulations!

8:08 PM  
Blogger Nicole said...

Oh my gosh, I love it!! Erik is so dang cute and look how far he's come. You sound so proud as you should be. Love ya.

12:28 PM  
Blogger Teresa & Shawn said...

That was a beautiful post. The video was precious. My favorite part was (in his deep voice): "I'm good." What a sweetie!

Enjoy the journey... I like that phrase and that's what I keep telling myself. I am sometimes in such a hurry for Clare to walk and be more independent that I forget to enjoy these last moments of her babyhood and just appreciate who she is right now in this moment. You have come a long way, Nance!

4:33 PM  
Blogger Amy K said...

BRAVO!

7:31 AM  

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