"Mommy, I Need a Wheelchair"
I really think that they should be listening to the kid and taking her seriously, instead of trying to deny her relief from her pain. Their experiment with giving her a wheelchair at the mall ended up with a very happy child that got up and used her legs when she was feeling up to doing so, but was able to rest and enjoy her outing when she wasn't feeling good. It sounds like she is more concerned with what other people think than with her daughter's comfort. All she has to do is give it a try, and see if her fears about the girl "giving up" are grounded or not. Otherwise, the kid will give up after a few more years of her pain being disregarded by her parents and doctors. Start listening and giving her comfort NOW so that she does not hate you for it later, or so that she does not sink into depression. Chronic pain is very stressful, and it can lead to other health problems if it is left untreated.
I myself CAN walk, but if I'm hurting badly, or if I know that I'm not going to be able to complete the outing without considerable effort and strain, I will opt for wheels so that I can focus on something other than making it through the day without collapsing. Shopping, visiting a museum, and enjoying a festival are ALL much more rewarding for me if I'm not blinded by the red haze of agony and fatigue. Thank god I am an adult and can speak up and make decisions for myself. If I had to go through this as a child, with my pain being invalidated by those who are supposed to be caring for me, I would be crushingly depressed and perpetually angry. It would make me feel as if I were unimportant, a burden, worthless.
I wish I could do something for that child to make her doctors and family make her pain a priority over the "OMG STIGMA" they are afraid of. Being in a wheelchair, and limiting certain activities (as one doctor suggested she do) is not going to make a person give up. It's simply a reasonable recognition of physical limitations--limitations that can be made up for in other ways. If she's not doing long distance running, then get her involved with a low-impact activity.
Children don't need to engage in hard-core exercise as it is--there's been a significant increase in sports injuries in young children because kids are being pushed too hard to perform at elite athletic levels. Do we really need to expect the same of a child with cerebral palsy who suffers from chronic pain? Activity does not have to involve distance running in order to be physically beneficial--this goes for all ages. Mild-to-moderate exercise is sufficient for health purposes. Gardening, average speed walking, swimming, yoga, and tai chi are enough to keep you healthy without doing damage to your joints. And for someone with chronic pain, it's better to not aggravate sensitive muscles with strenuous exercise.
I am also of the belief that exercise doesn't need to be mindless and boring. Birdwatching combines nature, science, and walking--from a gentle hike through easy trails, to serious hiking with some climbing involved, depending on the venue. Gardening is good exercise, and it is productive and educational. Nature walks down a local stream are also great--my family would often do these, encountering snakes, fish, frogs, turtles, and lots of different plant life. Going to interactive museums and places with "kid zones" are great ways to combine fun and exercise as well. I truly believe that the best way to keep kids active (and reasonably active, not insanely athletic) is to make it interesting.
In a nutshell, I really think the little girl should get her wheelchair, and her folks can then sort out some guidelines and plans for keeping her active when she is feeling up to it. Do it, before her pain causes her any more harm than it already has.
5 comments:
Hi Rio,
While I can appreciate your thoughts, please understand that there is a lot more to the story than you are aware.
You wrote: "All she has to do is give it a try, and see if her fears about the girl "giving up" are grounded or not."
First, we have tried to get Paige a wheel chair, starting at age 4 (she is now 8). 3 different neurologists denied her the relief that she needed. At the time, she was thought to have been recovering from some episode possibly related to a mitochondrial disorder. But, since she is INCREDIBLY hyper, the docs do not believe us when we tell them that she is both extreme fatigue and pain in her feet (and sometimes legs). Without the doctors approval, who is going to pay for her wheelchair? As it stands now, I carry her a lot. I do not discount her pain. And, I resent you implying that I do.
Secondly, we were accused of Munchausen's a few years ago. Although the person doing the accusing could not get very far thanks to a great psychiatrist that Paige was seeing, the whole experience was so scary. Imagine being afraid that someone was going to take your child away because they thought you were fabricating their illnesses? Since my daughter is extremely hyper, when others see her in a wheelchair, they immediately think there is something wrong with us (mom and dad). I am not about to live in fear that we will be accused again, if someone sees her in a wheelchair.
You wrote: "If I had to go through this as a child, with my pain being invalidated by those who are supposed to be caring for me, I would be crushingly depressed and perpetually angry."
Invalidated? How dare you! I have NEVER treated my daughter as you describe.
It must be nice to sit back and critize someone you do not know. You could have easily written me, via email, and asked questions. Instead, you post on your blog and treat me like a monster.
"I am not about to live in fear that we will be accused again, if someone sees her in a wheelchair. "
So this IS about others' perceptions, not about her needs. If the psychiatrist was able to verify that it was not Munchhausen's, then why are you so worried?
It is also about money, apparently. You can find lightweight wheelchairs for around $100-$150 on Amazon.com. Additionally, the Lion's Club provides medical equipment, including wheelchairs, to people who cannot afford them, and they do not require a prescription.
Finally, in your own words:
I'm not sure why I'm having a hard time with this. Maybe because I know what people will be thinking (about hubby and I-not what they will think of the wheelchair). Maybe because I am so afraid she will give up. Maybe because I am still hoping that all of the lasting effects of prematurity will just go away.
I don't even understand how she can have so much pain. I've watched her run around the playground... she looks good to me too.
From what you are saying, you are making this about YOU--YOU don't want other people to think bad things, YOU are afraid she'll give up, YOU want the "lasting effects" to "go away". Take yourself out of the equation and put HER first. Get a paper from the psychiatrist stating that this is not Munchausen's. Ask for a referral to a pediatric pain specialist. If you won't get one, make the neurologist WATCH her while she runs enough to wear herself out, so he can see for himself how she feels--or videotape it.
Do you know how many doctors an adult has to go through, on average, to get diagnosed with a chronic pain condition, because they aren't taken seriously? Sometimes it's eight or more! Well, you're going to have to do the same thing with your child. That's how it is, and it sucks, but there are a lot of doctors out there that don't take pain seriously, especially in children.
And if you're more concerned about what other people think than with her getting the relief she needs, then you ARE invalidating her pain. I'm sorry that this bruises your ego, but this isn't about you.
But hey, don't call the Lion's club, and don't get an inexpensive chair for her, and especially don't talk to a psychiatrist or pain specialist--because it seems like the real obstacles to her getting the chair are your mental ones.
This does seem easier than it is. You need a prescription for a wheelchair, even from the Lion’s Club. My dh has severe Rheumatoid Arthritis. He has had numerous surgeries and is on SS Disability. He can barely walk. He cannot get a referral to a pain clinic. Without the referral, the clinic will not see him. He takes Methadone, a very addictive drug, but it’s cheap. He cannot get a prescription for a wheelchair or a scooter. We also have 4 disabled kids. I have no health insurance. I’d love to just “buy” him one but we just spent $350 on a special needs stroller for one of our children. Insurance won’t pay for it because it’s not medically necessary. I got it off ebay.
Munchausen's is a very real concern for many of us with preemies and children with disabilities. They can take your child from you for weeks and months! You get put on a list and may never overcome the stigma. The legal fees can be outrageous. This is a common tool used today by the schools if you advocate a little too strongly for your child. One of my son’s schools tried to go down that road with me. Thankfully that child is very physically healthy and rarely sees a doctor. But it’s scary thinking about the psychological damage that could be done to a child due to being wrongfully removed from a home. Do you think that they check these things out before they take the kid? No, they shoot first and ask questions later. We walk a tight rope everyday trying to balance helping our children and making the deciders happy. We have to make the deciders happy or things could get much worse for our children.
I call b.s., considering my chair is from the Lion's Club, and they didn't require a prescription.
You can also ask on Craigslist and Freecycle if you can't get one through the Lion's Club. There are resources out there if someone is truly determined.
And if you're THAT worried about being accused of Munchausen's, get some documentation in advance from a psychiatrist and your PCP.
It seems to me that keeping a child in pain is more symptomatic of Munchausen's than getting them the care they really need.
You do NOT need a prescription for a wheelchair if you're buying it yourself. The only reason you'd need one is to get insurance to cover it.
Preemie Exp, if you post something on the internet, people can read it and comment on it and write about it on their personal blogs. That's how the internet works. It's public.
It sounds to me, also, like you're more concerned with what other people think about you than with treating your child's pain.
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