Thursday, February 26, 2009

5 Years Old and Running, in a Crawling Sort of Way

Well, Nappy has  been home for over 2 years and just recently turned 5. She's now telling everyone that she's going to soon be 6, and I keep asking her "What's the rush?". I'm still getting over the fact that my oldest, Lawyer/Social Advocate Boy, is now 12. Where, in the world, did all those years go?

After 2 years of parenting my most-special-needs child, I fully understand some of the frustrations that other parents face, and I wonder what happens when it's a parent who doesn't have the courage or energy to stand up and talk back.

Because we're fighting a muscular condition, I've known she needed some type of physical therapy from the start. So, why, WHY???, I ask, did I have to beg, cajole, pray incessantly and go through a year of being told I was a bad parent in order to get just that? Why did I have to endure medical professionals telling me that I was in denial of her condition, simply because I believed that she could manipulate her environment more than they did? Why did I have to endure OT sessions where an OT tried to help me teach her how to do things, when, in reality, Nappy can figure out on her own how to do things? Why did the "experts" like telling me she couldn't work a wheelchair, would never walk, and that she needed therapeutic preschool? Why did they make presumptions without just cause?

Obviously, I'm not over that.  However, I do love talking about how they were wrong on all accounts!

However, now, she is has the best intervention possible. One day a week I can take her to OT (Occupational Therapy) and PT (Physical Therapy). For one hour a week, her wonderful therapist, Miss Shannon, works with her arms and shoulders to stretch and strengthen what is there. What an amazing difference it has made! Shannon understands how bright Nappy is, and that Nappy wants to learn and move forward, and she understands that the best use of therapy is to work on those muscles and joints in order to get more flexibility and strength. We do, at therapy, exercises that we can't replicate at home, so each therapy session is supplemental to the exercises I do daily (at least in theory daily...) with her.

And, PT... well, Nappy can now stand on her knees for minutes at a time, walk on her knees while holding on to something and even balance on her knees while on a platform swing. Even if she never walks, these skills have tremendously increased the options for her to manipulate her environment. Miss Melissa, as Nappy calls her, has taught us exercises to do with her at home and in the pool that have improved her trunk strength and increased her stamina. This kid is all over our house now, with new confidence and strength!

So, I'm still frustrated with the doctors and therapists out there that won't listen to their patients or their patients' parents, but I'm excited to, finally, see the system working. I wish there was some way I could inspire other parents to have a big mouth like me so that they can advocate for what their kids want.

Nappy is also reading. She's reading anything she can. As we drive down the street, she's behind me in her car seat:

"Suuubbbwaaayy -- Subway!"

"Giiiiiffffttt shoppppp -- Gift Shop!"

"Biiiigggggssss -- Bigg's!"

Non stop chatter and reading. She's playing to piano, too, which is great for her hands. She loves it.

And, she's incredibly logical. Take, for instance, what happened after I forgot to pack underwear for her to wear after she changed from swim lessons.

"Sorry, Nappy, I forgot your underwear. You'll just have to go without until we get home."

"Okay. But it will be cooollld without pants!"

"Well, you're going to wear pants!"

"Mom, I can't wear pants without underwear!"

"Yes, you can. You can't leave the Y without pants!"

"But I can't wear pants without underwear, so I can't wear my pants."

"You think you can go home with no pants!"

"Well, that's better than going home with pants and no underwear. You just aren't supposed to wear pants without underwear."

Needless to say, I won the argument.

She's just a wonderful little treasure... another precious jewel, like the other 143,000,000 out there that still need families, only still uniquely herself. 


Laura Holland said...

Deb, it's Laura Holland here. Just got the kids to PM kindergarten and thought I'd check email before I go into super-productive mode. Instead I have been sitting here at my computer laughing (Holy, Holy Spirit), crying (Anna on Inside Edition), getting fired up (therapies and jumping through hoops) and laughing some more (she does have a point that pants without underwear is yucky). I think I know why you were put on this earth. Not only are you doing great work with your great kids, you inspire us all sitting here whose goal of the day is to catch up on laundry! I am humbly inspired.
Hugs to all of your clan,

Deb said...

Thanks Laura, I'm glad you enjoyed my blog! I hope you are all doing well and we'll see you around at some point!