Sunday, April 20, 2008

The Wheelchair Saga, An End in Sight!

If I were to have one piece of advice to give to any parent, whether parenting a special needs child or not, it would be this: If you believe, deep in your heart, that what the experts are telling you is wrong, you need to listen to your heart.

When we first started looking into getting "medical" help for Nappy, our youngest daughter who happens to have arthrogryposis in all her limbs, we were steered in the wrong direction. I'm not blaming the doctor, at least not completely, and I'm not blaming the system. Neither is perfect, so in the end, you need to rely on the Holy Spirit to lead you down the right path.

About this time last year, a doctor who had only spent about 1/2 an hour looking at our daughter's arms and legs, made the decision that she would not be able to work a manual chair, and therefore, in order to "keep up" with her peers, needed a powerchair.

This doctor had no idea how this would impact our family.

First of all, it would mean changes to our van. If we wanted to cart the chair inside the van (which is what the salesman told us we would need to do), it would require purchasing a new vehicle. To transport our family of 7, would require a 15 seater van. Then the van would have to be customized to the lift/tie-ins. The estimates for that were anywhere from $15,000 to $65,000.

Then we learned that we could cart the 350lb wheelchair on the back of our van. A lift and installation would be anywhere from $1,500 to $10,000, depending upon who you talked to.

Then, there was the question of where she'd use this 350lb behemouth. It wouldn't work at home (not safe for the other children or toys), and she couldn't use it in a her Sunday School class or Co-op class -- again, for safety. She would need direct supervision, so she couldn't play with it outside unless I was with her. So, again, when would she use this chair? In therapuetic preschool. That would mean she, who only just joined a family one year ago, would be separated from us about 40+ hours a week (including transportation).

There was the cost of the chair, too, a $3000 co-pay (in addition to all the house and van work). So, this chair would have easily put our family anywhere from $5000 to $85,000 into debt.

What would that mean for our children? A total lifestyle change. Gone would be the days of relaxed homeschooling, time with mom and dad and opportunities to pursue their talents and interests. To pay off all the debt, I would have to go back to work full time, and, chances are, one of us would have to work a second job.

What would all that mean for their relationships? Certainly there would be resentment on that part of the other children -- they lost their beautiful childhoods because of a wheelchair. It would also teach Nappy that our family revolves around her needs. There's a great lesson.

Long term, what would that have meant for Nappy? Well, she would've never learned that she could work a manual chair. She would have never learned that she could climb into and out of a manual chair. She wouldn't be able to climb steps. She wouldn't have such a strong cardiovascular system. She would think that her enviornment must always be adapted to her, rather than she conquering her enviornment.

Now, if she wasn't able to work a manual chair this would all be different. For someone who's not able, a power chair is a liberating and beautiful thing, and I am so thankful that they have been invented!!! But the thing that was crazy is that no one checked to see if she could, it was just assumed she couldn't. The number one cardinal rule of working with the disabled was broken: NEVER ASSUME THAT A PERSON WITH A DISABLITY CAN'T DO SOMETHING!

So, now here we are a year later, and I have been proclaimed "right." Several days ago we ordered her a manual chair, under the direction of her doctor and a PT, that is fitted perfectly to maximize the workings of her unique body. Through out the entire wheelchair evaluation, the same people who, before, were telling me that I was in denial over her disabilities, that I was holding her back, that I was denying her the chance to keep up with other kids, were now telling me that I was "right." "This is the best situation for her." "Working the wheelchair will help with building the muscles that might help her to walk."

So, all of this is not to say that I'm really smart, or the doctors are really dumb (the vast majority of arthrogryposis patients cannot work a manual chair), but to just say that the Holy Spirit can convict and encourage you to see what the experts can't. Through this entire year, I had a weight on my back about the power chair. I knew it wasn't right for her. I knew it wasn't right for our family. It stunk to disagree with the experts. It really did. I had my ability to parent her questioned, and I'm sure, behind my back, my sanity questioned. But, I really believe God used his spirit to convict me that I needed to listen to Him and to do the unusual, and I'm so thankful that I did.

Ultimately, as parents, you're responsible for your child's development. The doctors and therapists can guide and direct, but they only get a small snapshot of your child's life. It's up to you to advocate, to follow God's lead, and to stand up for what you know your child needs.

In the end, our daughter has no clue of all the controversy that's surrounded her. She is, however, really happy that her new wheelchair will be purple with blue and silver accents and front wheels that light up.

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