Deb Fixes the Myths of Therapy

Our oldest daughter came to our home, despite multiple handicaps and a life spent in an orphanage, completely able to keep up with her peers. She could dress herself, feed herself and even handle the bathroom on her own.

So, of course, nearly every medical professional, teacher and child "specialist" we met with encouraged us to place her in therapy.

"You know, she would be able to have free occupational therapy through the state -- part of the early intervention program. Your public schools would have to pay for it." One well meaning teacher told me.



"Why?" I asked. "She can do everything at an age appropriate level."

"Yes, but, it's free and would help."

Now, I should've asked, "Help with what?" but I just let it drop.

Another problem that occurred to people was the fact that our daughter spoke "Russian". That's in quotes because she actually spoke Ukrainian, which is a different language than Russian, but I could never convince people of that.

So, people kept telling me (despite the fact that she was picking up English so fast she was speaking in full sentences within a couple months of coming home) that she needed speech therapy. Of course, our insurance didn't agree, so they weren't willing to pay for it. I ended up calling our local public school to see what speech services were available for 3 year olds.

"Oh yes," the school system lady told me, "she certainly needs therapy! You need to enroll her in our preschool and then she'll get the services she needs."

"What services?" I asked.

"She can be a part of our class which has a focus on language development."

"So, all the kids have language problems?"

"Most of them."

Okay, so to learn English, I am supposed to take her away from her well-spoken older brothers and immerse her in a classroom full of kids who have language problems? Oh, that's logical!

Incidentally, 5 years later, our daughter took the Stanford Achievement test and tested at the 95th percentile and higher in her language abilities. Drat! I wish I had taken them up on that "speech therapy"! Maybe she'd actually be equal with her peer group rather than ahead of most of them.

Thankfully, our next daughter avoided all that junk, probably because her differences are not very noticeable to onlookers since it is just some missing hand and arm parts.

But our youngest, the one that can't walk, she's gotten the fullest treatment. Not just therapy, not just intervention, but a life that should be structured around therapy: therapeutic preschool.


Now, apparently, our daughter "should've" been fitted for her power chair at 18 months. She wasn't adopted until she was nearly three (what can I say, we're slackers), so she was already "behind schedule". So, to really help her catch up here was the plan:

1) Have her fitted for a 300 lb power chair that she can use no where except therapeutic preschool
2) Enroll her in therapeutic preschool so she can use the chair


Now, I love the idea of taking a child out of an institution, putting her into a family, and then placing her in an institution! That's just great for promoting healthy attachment!


Not all therapy is a hoax, of course, but I am just amazed at how quickly these professionals are willing to categorize my children. Our middle daughter provides another example. When she was originally assessed after her adoption, upon looking at her file, the first thing the occupational therapist said was,

"Well, she's from Kazakhstan so were definitely looking at fetal alcohol syndrome."

Not, "there's a chance for fetal alcohol syndrome" or "she's at risk for fetal alcohol syndrome" but, "she's got it". How's that for racial profiling?!

By the way, she doesn't have Fetal Alcohol Syndrome. Perhaps her birth family, who were Kazak, not Russian, were Muslim and didn't drink? I don't know, but I do know that I could've started years of therapy for a disability she didn't have because someone made a judgement about her based upon where she was born!

Intervention, where needed, is a good thing. Intervention, when inappropriately applied, robs my children of time they should be spending having a childhood.

Are my husband and I the only people that are really looking out for our girls?

Of course, any intervention we seek for them doesn't line our pockets or give us job security... so perhaps that's why we question more.

The Space Pen of Occupational Therapy

Tonight we took a trip to the zoo for the annual "Festival of Lights". We had a good time (we got there before the crowds started showing up), and our youngest really enjoyed the elephants, as evidenced by her non-stop chatter about them for the rest of the evening.

But, here's what is amazing to me: she enjoyed the zoo without use of a power wheelchair.

According to the therapist fitting her for the powerchair, the zoo is one of those places that she just can't keep up with other kids. Now, grant it, the therapist is right that she couldn't maneuver the manual chair around the zoo. However, as I pointed out to her in our conversation, I don't want our 3 year old running around the zoo on her own.

Well, last night proved it! I really wonder if this lady's ever tried keeping track of 5 kids in a huge crowd? I don't want more independence at a place like the zoo, I want the opposite! Has she even considered why wagons are so highly popular among mothers of preschoolers? In order not to lose them, I need 2 of the 5 confined!

Since both my husband and I were there last night, we didn't take the wagon, just our daughter's wheelchair. Our 5-year-old walked and held someone's hand. The three big kids just walked. I did wonder what some medical people would think about our oldest daughter, with the prosthetic leg, walking around the hilly zoo -- even though she despises the thought of using a wheelchair.

Halfway through our evening, I burst out laughing.

"Even besides the fact that we'd lose her if she was driving an electric chair," I told my husband, "She could never do one here!"

"I know," he replied, "too many injuries!"

The previous night, during our Sharon Woods fiasco, we visited the nature center. Using her manual chair, our daughter managed to bruise the legs of at least 10 or 12 people by bumping into them. Of course, in the manual chair, I can just reach out and stop her, as can the person being bumped. In the power chair, if you don't have access to the stop button, you're not stopping her.

Also, the entire evening would have been longer with the wheelchair, no less. In stead of walking out the front door, flipping the wheelchair into the hatch of the van, and driving off, we would have had to:

1) Get all the kids in the van
2) Carry our daughter out to the van
3) Walk down the rest of the driveway
4) Undo the combination chain lock on the driveway gate (it wraps around the bottom of the gate to hold it shut so the dogs can't squeeze out)
5) Open the garage door
6) Turn on, unplug the the wheelchair
7) Drive it up to the back of the van
8) Open the platform on the back of the van
9) Drive it up on the platform
10) Lock it and cover it
11) Then go back and close the gate

The great thing would be reversing it all when we got home. Does this lady have any idea how much work it already is trying to get 5 kids and 2 adults out the door without lugging around a 300 lb wheelchair?

All this reminds me of the story of NASA's space pen. This past summer, while visiting Kitty Hawk, we had the opportunity to see the space pen.


Until I actually saw the space pen, I thought it must be an Internet myth. The story, of course is full of myth, but the idea is the same. Americans spent thousands of dollars developing an anti-gravity ink pen. The Russians used a pencil.

Are we that prone to making things more complex than they need be?

By the way, they have since discovered that a regular old ink pen works just as well in space as the "space pen", and I'm still convinced that a regular old manual chair works much better for a preschooler than a $35K power chair.

Call me crazy. (That was rhetorical.)

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.