Am I Really Missing the Boat?

Yesterday was another "reality check" day. Once again, I was back at the hospital trying to figure out what we are supposed to be doing with our daughter whom all these people think is broken, and we don't think needs fixed.

This time was better than before. We were really not clicking with her last specialist, and at the advice of another doctor, switched to one of her partners. So, I have to say, this was so much better. First of all, I had all my questions answered. Second of all, she helped me develop a plan for how we will manage this case of arthrogryposis, including which limbs we should start with and in what order (right leg, left leg, right arm).

However, there were still things that bothered me. The first was a question asked by the nurse.

"Is she in preschool?"

At first I responded with a "no", but then I realized she goes to a preschool class at our home school co-op once a week (we've been sick for 3 straight weeks, so she's missed a lot lately).

The nurse looked befuddled at my "no."

"Well, actually, she goes to a preschool class once a week."

"Oh great. Then she does get some socialization."

UGGHHHH! Do people have any idea how tired home schoolers get hearing about "socialization." I thought about telling her that, actually, she's quite socialized for a 4 year old. She has 3 "good" friends, likes to make new friends, loves all her family and also wants to be with us rather than strangers. I thought about telling her how there have now been numerous studies done on the socialization of home schoolers (some even done by university education departments trying to prove that home schoolers are socially deficient) that have proven that, on average, home schoolers have better social skills than their public and private school counter parts. I thought about telling her that socialization is part of the reason I home school. I like having confident kids who understand how to make friends with people, don't instantly judge other kids by how they look or act, and also know how to stand up to peer pressure. But, instead, I just smiled.

Then, a resident came in and looked at our file.

"How long are you planning on home schooling?"

Am I wrong to think that this really isn't any of their business? I have worked with many other doctors at this particular hospital and none of them have ever questioned how my children were schooled. I didn't question it though, I just answered her.

"Until we think it's no longer in her best interest."

"So you're making her go with out an I.E.P. ?"

I wanted to say, "No, actually, her entire education is an I.E.P. (Individualized Education Plan), because she's my only preschooler right now. Her also home schooled 5 year old sister just finished up with all her kindergarten work and has started first grade -- obviously disadvantaged by homeschooling." But, again, I just smiled and said, "No, she doesn't have an I.E.P."

All the questions done, the real doctor came in. Everything was fine. Our daughter has multiple issues with all four limbs and this doctor was extremely helpful, but then she said something that really bugged me.

"She's really more limited than you realize. Maybe you're just used to her because you've been with her for the past year."

Is she really more limited than I realize? Is that really true? I mean, I live with the kid. I'm the one that has to drop everything and lift her onto the toilet when she needs to go. I'm the one that helps her put her shirt on and off. I'm the one that lifts her onto furniture when no step stool is available. I'm the one that waits while she climbs the steps, moves a step stool and climbs onto the furniture, and also waits while she wheels herself places.

Can a parent really not realize how physically limited their kid is?

In addition to that, how would things bode for her if I wasn't as positive about what she can do? Where would she be if I was approaching her from a standpoint of how limited she was?

I just really don't get it. She does everything that she is developmentally supposed to be able to do, with the exception of walking, putting herself on the toilet and taking off her shirt. How limited is a person if they can do all that's expected of them?

I realize that there are hurdles down the road. She'll have to learn how to put on her own braces (something that she isn't expected to do right now because of the design of the braces), how to put on a coat or jacket, how to cook, how to do more complicated chores and how to drive. But, am I missing something somehow? She has no problem manipulating small objects with her hands so handwriting and learning an instrument won't be a problem. She's shown an aptitude for letters, so I doubt reading will be a problem. She's great with numbers. Where's the problem? She's capable.

But, then again, I don't have an M.D., so maybe I'm just missing the point.

More on the Wheelchair -- Will She Ever Stop? Probably Not!

I think the thing the bothers me most about this wheelchair controversy is that the medical professionals are assuming that they know what's best for our daughter not because they know her, but because of case studies and "research" done on the use of power chairs. However, they are blowing right past one aspect of arthrogryposis: the fact that you just don't know for certain how affected the muscles and joints are! While we know that her muscles and joints aren't working properly, we don't know what atrophy is from the arthrogryposis and what atrophy is from lying in a crib in an orphanage for 2 1/2 years. The fact of the matter is that she is significantly stronger than she was when we first adopted her. However, her Doctor is certain that all the atrophy she saw at the first visit was directly related to arthrogryposis! She totally dismissed the idea that any of it could be from life in an institution.

The other thing that's bothering me is that they are making it like she needs certain things in order to be whole. There is this idea that we need to provide the perfect house, the perfect van, the perfect wheelchair. No wonder pregnant people worry so much about if their child has a disability! I mean, I had no clue all the balls and chains that our culture had attached to the parents of special needs children until we adopted our youngest (mostly because we avoided the medical scene as much as possible --- something I'm so glad about now!).

So, here I am planning a future for her that includes following God where ever He leads, including marriage, higher education, and travel, and trying to decide when she should start learning to read, study Latin, and piano. Meanwhile, her doctor is talking about her needing "on going therapy for the rest of her life" in order to just function. Are we on two different planets or what? So, when does she get to be a kid? When does she get to be a student? An adult? A wife? A Mom? In between the "ongoing therapy sessions?"


In the end, I'm angry because they just keep trying to fix her, and I don't think she's broken! I think the we just need to assess where she's at and meet her there. If a manual chair works now, then use the manual chair. If she wants to crawl on the floor, let her crawl. If she wants to use the chair, let her use the chair, and if she wants to try to walk, help her walk. She's the one that's going to have to live life in her body, and, especially considering how well spoken she is, she lets us know what she needs!

The Wheelchair Controversy

"I just don't understand how, as a parent, you wouldn't want your child to be able to keep up with other kids!" -- Therapist at Children's Hospital to me


If there is one thing I would do over, it would be the process of getting our youngest daughter a wheelchair. I do think that the professionals at the hospital really have her best interest at heart, but I also don't think that they know her or her life like I do. And, I'm really tired of medical professionals (hope I'm not offending anyone, because I do know lots and lots of good medical professionals) that say, "You know her best, so you know what's best for her.", but then turn around and tell me I don't know what she needs!

I've tried to figure out why I never got as frustrated with Doctors with my oldest daughter, and I realized it was because we hadn't really involved any doctors until recently, and then we very specifically chose what doctors and therapists would be involved. For instance, our oldest daughter has a wonderful physical therapist who not only pushes her, but inspires her. My daughter looks forward to seeing her and often talks about how "Barb will be so proud of me!"

However, I am just not on the same wave length with our youngest's doctors and therapists. The issue of controversy surrounds her wheelchair. Without ever testing her with a manual chair or even attempting any formal physical therapy, they decided she needs a 300lb power wheelchair. So, in the course of waiting for this behemoth to arrive at our home, my husband and I bought a manual wheelchair off the Internet.

It turns out that she can work the manual with no problem at all. In fact, she's so good that she can pop wheelies in it! Backward, forward, circles! Although her endurance is greatly improving, she can't go distances in the chair. Of course, she's three, so if she has a distance to go, then we push her.

Anyway, her skill with the manual led us to decide that a power chair was not necessary -- at this time. Down the road, when she needs more independence, it would make perfectly good sense. However, the power chair weighs 250-300 lbs, requires the addition of a lift to our van and we cannot take our eyes of her when she's in it (because she can hurt herself or someone else!). She cannot use the power chair in our home, at her preschool class or at Sunday school. We currently don't have a lift, so she couldn't take it anywhere anyway. And, of course, with 7 of us living in a small cape cod, storage is a big issue.

So, I ask again! What is the point of this chair!!???

Last month I called the hospital to talk to the therapist about putting the order on hold. However, she was on maternity leave so my called got bounced from person to person, and no one did anything about it. In the meantime, our insurance approved the chair.

Now, the problem. We don't want it.

So, after the therapy center found out from the medical supply company that we don't want it, I got another phone call.

Basically, they can't believe we don't want this chair. After a lengthy conversation, it comes down to the fact that she will use this chair a couple times a month, if that, for things like the zoo or the museum or taking a walk at the park.

So, saying she uses this chair 2x a month for the next 3 years (saying she's trained enough to take it into a classroom when she's in first grade at which point she will use it more regularly), that means that each time she uses the chair, it will cost approximately $449. So for $449 she can "feel like she's keeping up with her peers" those couple times a month. What???

Now, our insurance company is paying the majority of the chair, but we're still responsible for $3000 plus the money to put the lift on the back of the van (approximately $1000). The therapists are adamant that she needs this chair for her development.

Now, I'm not a therapist or early childhood development specialist, but, in the past year of being in our family, this child has:
1) Learned to speak English fluently
2) learned to count to 10
3) Learned to understand the concepts of zero, 1, 2,
4) Begun building with legos (the little ones, not the big ones!)
5) Become fully potty trained
6) Learned to dress/undress herself, with the exception of her shirt (no small feat for someone who can't bend her arms!)
7) Learned to recognize her name in print
8) Learned all the requisite animal sounds that American kids are supposed to learn
9) Learned to be silly and tell jokes
10) Learned to follow directions and obey
11) Learned how to work a manual wheelchair

And, I could continue the list. Now amazingly, she's done all this without a power chair.

But, here's what gets me. When I'm told something like, "I don't understand how, as a parent, you wouldn't want her to keep up with other kids." I just don't even know how to respond! Does this lady get it at all?? Heavens! I would cut off my own legs and give them to her if I could! Of course I want her to keep up with other kids! I live with the pain of her disability everyday, and if I could fix it I would! But that's just the point... I can't fix it. No one can! She's got to live with this for the rest of her life.

We're trying to create a life for her where she's not dependent on $35K wheelchairs, but has learned to manipulate her environment as much as possible on her own. I want her to be able to travel, to crawl out of a house in case of a fire, to be able to live independently if her power chair breaks down. If she's using a power chair from the start, I highly doubt she'll learn those things. In addition to that, we can't center our budget around a tool she'll use 1 or 2 times a month. I don't think that's fair to her (while we're at it, why don't we just teach her that our family revolves around her special needs!) or anyone else.

In addition to that, I feel guilty about the expense. Our country is so screwed up where health care is concerned, and here we are doing our bit! Our insurance company (and probably some county funds to boot!) are going to pay for this! I know I can't change the system, but I feel sick playing into it. In the meantime, it just seems like this over treating is getting worse and worse. Recently I learned that there are people talking about fitting infants with these things! Infants -- 4 or 5 months old!

In the meantime, we're watching our daughter get stronger and stronger everyday that she uses the manual chair. She's also been trying to stand and walk. Of course, the therapist pointed out that it won't interfere with any of that because she'll still be using the manual and scooting around the house and in classrooms. So, again, what's the point of this power chair?

The end of the story is that we're probably going to get the chair. The hospital staff are working with the county to access funds for the co-payment. And, while I do think she'll be using the chair in a few years, this creates another problem for us. The insurance will replace the chair every 5 years. So, by the time she is 8 or 9, she'll be ready for a new chair. However, we won't have access to those funds again, so we'll have to shell out the co-payment. Now, if we waited to fit her until she was 5 or 6, we'd at least have more time before we'd have to come up with money for the next co-payment, and she'd really use the chair the entire time we have it. From a financial side, as my husband pointed out, helping her go to college is good for her development too.

This has been so frustrating that I have wanted to find a park somewhere and just shout, "MY CHILD IS NOT JUST HER MEDICAL CONDITION! BEING UNABLE TO WALK DOES NOT DEFINE HER OR OUR FAMILY!" and "I'M NOT A BAD MOTHER JUST BECAUSE I THINK IT'S RIDICULOUS TO FIT A 3 YEAR OLD WITH A POWER CHAIR!" until I'm blue in the face. I'd probably end up in the loony bin, though, if I did.

Oh well. I think there are some therapists out there that would like me to be there.