Being the parent of a special needs child can often feel very lonely. Thankfully there are support groups for parents and siblings, as well as social outlets such as the Miracle League. Everybody needs somebody to understand them. And everybody deserves to have a little fun.
Most of the people who meet Will understand that he has cerebral palsy. They know that he is a smiley, fun-loving kid who's got a couple of extra needs. What I have learned, though, is that some people don't necessarily understand that. Some people think that when you are talking about the equipment or nutrition that your son needs, you're somehow trying to gloat, are completely ignorant, or trying to commit insurance fraud! Some recent experiences...
a) Will's wheelchair is custom-made for him. Different pieces were chosen specifically for some of his tendencies. For instance, he has a rounded head support because he needs some assistance keeping his head in the center. He has substantial trunk supports to hold his core upright because he has low muscle tone in his abdominal and back muscles. With anything custom and related to special needs, the price tag is automatically high.
We were out with friends one time, and the topic of Will's wheelchair came up. I explained about the special parts, and ended my story with a punctuation mark - the price tag of the chair! As I turned away to tend to Will for a moment, I heard the wife say to the husband "that chair isn't anything special. The regular stroller that we have is a whole lot nicer. And it cost a whole lot less."
Mind you - my purpose in talking about the price wasn't to gloat. Far from it, actually. I was merely trying to express my shock and disbelief that something your child needs can be priced so ridiculously high... because honestly, who WANTS to have to purchase a wheelchair for their child?
b) Children with cerebral palsy often have a difficult time gaining weight. This is due to the difficulty they have with coordinating the many muscles it takes to swallow. Because of that, you want to make every swallow count! Additionally, Will has not yet learned how to chew. This means he relies on a liquid and puree diet exclusively to meet his nutritional requirements.
Whole milk has 18 calories per ounce. Standard infant formula has 20 calories per ounce. Regular vanilla Pediasure has 30 calories per ounce (in addition to having balanced nutrition). Given what I said above about making each swallow count, you can understand why Will consumes a lot of Pediasure! His physicians were the ones that suggested the Pediasure diet, and fully support us using it as Will's major source of calories.
At a recent get together, I was explaining to an acquaintance about Will consuming almost 40 ounces of Pediasure per day between his bottle feeds and his g-tube. She asked to see the bottle and started chuckling after reading the nutritional information. She said "this isn't good for your child. This is almost all sugar. No wonder it has such high calories. You really should worry about your child putting on too much weight from empty calories. I would never let my child drink this."
Did she honestly think I would have my child on a Pediasure diet if it wasn't good for him? That I wouldn't talk to a physician through and through about what was best for Will? Because as much as the Pediasure is great for Will's growth and development and the g-tube helps him maintain proper weight, they aren't things you want to need for your kid.
c) As I discussed in earlier blog entries, Will recently became the proud new owner of a gait trainer. Don't worry, I am not going to mention its cost. I have learned my lesson. Just know that it was offensive and outrageous.
A couple of months into the special needs equipment waiting game (the time between when you figure out the equipment that you need and when it magically arrives at your door), I called the equipment provider to figure out what was taking so long. They indicated that I needed to call my insurance company. I'm well-versed at this game of cat and mouse.
I called the insurance company and talked to the durable medical equipment team. The man that I spoke with indicated that they were doing a full review on the order and this was taking some extra time. I asked why they needed to do such a long review, as we had provided all the prescriptions and letters of medical necessity that are required.
His response to me: Well, it really seems as though this gait trainer is more of a "nice to have" instead of something that your son really needs.
Once I came back from the point of absolute lividity, I asked him if in his experience with children with quadriplegic spastic cerebral palsy, has he ever seen a child learn how to walk without a gait trainer? Of course not. Then how could you even think of it as a "nice to have?!?!?!" Why would I want a gait trainer for Will if he didn't need it?!
Often times, experiences like these make me want to pull back into myself and our family. I suppose this is where the self-imposed loneliness comes in for me. It is tough to put yourself out there only to feel like you're being judged or have to constantly fight to get what you need. I know this is a way of life for a parent of a special needs child... but that sure doesn't make it any easier!