This is something I originally posted a little over a year ago on this board.
I think it fits well here, because it is about a performing group. None of the parents or the participants have any illusions about our ability to perform because we know what we have all gone thru to get to this point.
When we perform, we have the audience in tears and get a standing ovation. The parents of the 'perfect kids' who can dance with grace and precision can see how much our kids are working and how difficult it is for them to even be up on the stage.
And they are happy for us and with us for the chance to perform, perfect or not.
Here's the story:
Youngest DD and I were on our way home from the one place in the world where we fit in completely. Everyone in that little "world" understands what we are going thru because they have been there, or somewhere nearby.
The "world" we were in is tiny; one big room about 30 by 40 feet, one small (but wheelchair accessible) restroom and another room that we sometimes use if someone has brought treats for a birthday. When that happens, several of the participants just lick the treats, some are fed in messy mouthfuls shoved into their mouths by mom or helper, some can't eat anything by mouth and devour the treats with their eyes. Some don't look like they notice we have moved from the large room, until one girl cries (more like screaming) until we have finished singing Happy Birthday and several of them get startled and arms and legs jerk. My DD will never eat anything when we are away from home; afraid she'll make a mess and suspicious of plastic cutlery - she has broken one too many plastic fork when she couldn't control how hard she bit down. Her treat has to be wrapped up in a napkin and placed into her bag; where I may be able to remove it later without her noticing (or maybe not and I'll find it in a few days, a sticky mess of frosting crusted napkin.)
In this world, my DD is not one of the most disabled, she is actually one of the least disabled. Welcome to the world of the Uniquely Abled Dance Class. My DD is the one with glasses in the back row on the far right of the picture. The one who is obstinantly looking out of the picture. This picture was taken a few years ago; the one they used before was better (at least of my DD). The photographer's helper that year was a cute teen guy. The helper when this picture was taken was a middle aged woman; not the same effect at all.
And Uniquely Abled we are. Some participants can walk a few steps, some can talk, some can understand everything that is said to them, some can drive their own wheelchairs, but no one in the room can do all those things (except us helpers, parents or other family members who are watching). Some participants are wheeled around the room, as insubstantial and apparently as unfeeling as ghosts. Sometimes a piece of music or movement breaks thru to one of those participants and they smile or make a sound. In our world that is a cause for group rejoycing because we know how precious that connection with the world is for the parent of that child.
Some of us envy other parents because of things their kids can do that our child can't:
I envy J and N because they can talk. (J and N are in the first row, the 2nd and 3rd from the left).
Mothers of typical children wouldn't understand that because, by typical child standards, J and N can hardly talk at all. They speak in quiet, breathy voices with pauses between words as they struggle to find a word or force it out. My DD is one who can understand, but not talk. She's sometimes very noisy, but doesn't have the ability to say any words that people in the "normal" world can understand. She talks in signs, gestures and what Ursula in the Little Mermaid calls "body language".
J and N's moms have told me that they envy me because my DD is fully grown, but is tiny (5 feet tall and 86 pounds), a perfect size for transfers. J and N live in a world of using Hoyer lifts to move from place to place because they are too heavy to be lifted and can't support their own weight. I'm lucky because, not only is DD tiny and light, but she is also able to stand and walk if I hold her up (clumsy and lurching, but walking and easier than using a lift).
I envy LR because she does a good job of controlling her computerized talking device (even though she has to do it with scanning and controlling a switch with her head). (LR is in the front row, right over the word "the").
LR's mom envies me because my DD can drive her wheelchair with her hands, instead of a head array like LR has to use because she can't use her hands.
I feel lucky and don't know how some of the parents survive their life; I don't know how I would.
Some of the kids hardly react to anything and there is seldom a connection between them and the outside world. That would be hard for me, but they seem to cope. Maybe they are watching me and wondering how I cope with DD, who connects with me a bit too much sometimes. My DD sometimes bosses me around - everyone in the class knows the drill. She is obsessed with my purse. Sometimes, I have to wear it. Sometimes it is supposed to be on the floor in a specific place. If I leave it by my coat, she's OK for a while, then gets an absolutely paniced look on her face until I put it where she wants it to be (it's my purse, if anyone is paniced about where it is, it should be me). The back of her wheelchair would be the logical place for the purse to be, but heaven forbid I put it there, that is not part of my DD's "rules of conduct" to have it there.
I also feel lucky that my family doesn't have a "before and after" like some of the parents do. Some of them put a "normal" child to bed one night and then something catastrophic moved them from the world of "parent of 'normal' child" to the world of "parent of special needs child". We didn't have any sudden uprooting like that; just a slow realization that our child was not following on the path we thought she was. I don't know that I could handle the fast uprooting.
We feel lucky and thankful - today 2 kids are missing from class, but not for any bad reasons. One is on vacation and one is in respite care because her parents went on a trip and she had no way to get to class.
In a "typical" dance class, kids might miss class because they forgot the date or had car trouble. In our world, missing the class is more likely something more ominous; one boy had pneumonia earlier this year, my DD missed classes a few times because she had seizures the night before and was too tired, a year ago one of the girls got bacteremia from an infected baclophen pump and nearly died. Today, our world is lucky because no one is sick.
We feel lucky and thankful because in a world where parents without special needs children often don't stay together, most of the parents in our class are. And some kids have entended family members who come somtimes to observe the class. I feel lucky because I have a DH who loves me and adores our DDs (and they him). I have an older DD who is a real blessing. I feel blessed because she has found a young man who she loves and he loves her back. And both of them love my younger DD.
We feel lucky and thankful that a wonderful woman named Nancy started this class - and provides it for us all free of charge. All because she had a friend who went blind and was sad that he would not be able to take dance classes any more. Nancy couldn't see a reason why not and started dance classes for people with visual disabilities and hearing disabilities and Developmental Disabilites and our class, where all the participants use wheelchairs.
We feel lucky and thankful that we have others we can talk to who understand what we are saying. After class, we talk about things that wouldn't make ANY sense to most people; talking in a sort of verbal shorthand about power wheelchair settings and computers that talk for our kids and more usual things like glasses and bras for our teen girls (but from a different viewpoint) - how many parents are trying to deal with the problem of keeping glasses in place when the child moves their head on the headrest, or how many times you can bend wire rim glasses back into shape after they have been run over by a power wheelchair. I'm pretty confident that most mothers of teens have not discussed how to keep a bra on their teenage DD because her athetoid movements make her "slither" out of it.
I am lucky and thankful that I happened upon the DIS boards in 1999, which led to the disABILITIES board starting and being able to share joys and sorrows and WDW hints with other people on this board. The people in the dance class world are mostly unaware of the DIS world that I am part of, although one of the moms gave me one of the most poignant suggestions I had for this board - her DS can't sit up without his wheelchair which has trunk pieces that "hug" him into his wheelchair and a head rest that cradles his head. He is one who hardly ever reacts to anything - a newborn in a tiny 23 year's body. When they went to WDW, one of the CMs at one of the photo shops that superimpose your picture against a different backround in the computer devised a way to digitally remove the wheelchair from the picture. With that piece of magic, the woman got to see her son for the first time without his wheelchair.
True magic to her.
And we all understood and were happy for her.
So, I wish you all feel as happy and blessed today as I do, as we discuss little things that just might be huge for the person who we are discussing with.
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Awesome church. Worship isn't just for those that are perfect. And, boy am I thankful for that!!!!!!
