Remembering my first day of work at the rehabilitation center for children with special needs. I came to work early in the morning, to be on time. I looked around and saw that everyone is getting ready to go somewhere. And I knew that the staff in this rehabilitation center often takes the children to fascinating places: natural wells and springs, the city parks, the cinema, theater or different art exhibitions. But had no idea where we were going this time.
Do you know how one feels during his first day at work? Somehow like you’re not in your place. I was yet “walled off” from everyone, didn’t know who is who.
Later I learned that we were going to the natural well in Rakivets. I helped a driver to put the wheelchairs into a car. We all got into the car. I was given a child to hold, a three-year-old boy. And we went.
As the car sways while driving, putting the wheelchairs in, the brakes should always be on, so the chairs don’t move along with a car. Therefore, all the wheelchairs had brakes on.
We arrived to Rakivets, took out the wheelchairs. Women took the children that can walk, together with wheelchairs that have big wheels, these are easier to manage. And they said to me, “Take the wheelchair that is hard to manage because it has small wheels – there is a dirt road, rocky and pebbly. I said: “Okay”!
In the seat, there was a small boy with severe physical limitations. I took the wheelchair and began dragging it along, the child just sat there saying nothing. I didn’t know how to behave properly in such a situation back then, I had no idea of what I was supposed to say to this child, so I just said, “Let’s Go!” And how should we go, if the wheelchair isn’t moving? I pushed it forward, it didn’t work out. Everyone was just passing us by, staring, someone asked me “Is it hard for you?” I answered, “No it is okay, it’s easy!” Actually, it was so hard! I pushed and dragged the wheelchair along in the dust, stones, gravel. I dragged, dragged and dragged it. And then someone said, “Come on, let me help you”. I answered: “No, no I will drag it till the end of the road on my own, it is okay!” Everyone had already reached the spring, they were standing around, wheelchair straps unlocked, lightly sprinkling the kids with water, with the kids laughing. And I continued dragging that wheelchair with everyone watching me.
When I finally reached the spring, one of the employees just approached the wheelchair, reversed the brake to an “off” position and said: You had the wheelchair brake on the whole time!” And I said, “Yeah… I understand”. But my innermost response was “Just awful! I, like a sheep, had been dragging the wheelchair with its brake on for so long! I was asked if I needed help, and responded: “No, I will do it alone.” Were I to release the brake, it would have been 50 times easier! Besides, that wheelchair was heavy, plus the wheels did not spin at all!” I took the baby out, sprinkled him with water a bit and heaved with relief, thinking: “That is all, the road back will be easy”. And indeed it was. When we headed back those wheels were spinning.
I very often see that parents of children with special needs don’t want to be helped. They do everything themselves, as much as they can, sometimes even further complicating their lives. For example, when there is an opportunity to choose a good stroller, which will be easier to use, one of increased durability, with bigger wheels, the parents don’t do that because such strollers are specialized. They say that people will notice that this stroller is different, probably they will pay more attention to the child sitting in it, because the child is different, special. And so very often parents choose a conventional baby stroller which the child has already outgrown, in which he/she is sitting incorrectly, and isn’t comfortable; in addition, it is harder for parents to deal with obstacles on the road. When there’s a baby in the stroller, there is always someone who will help with the stairs.
And when a mom comes with a child that has a special need, a child older, larger and heavier, but still sitting in a stroller, she usually doesn’t want anyone to help her or look at her child closely. Then this mom starts doing everything herself. But there are also parents who do not care for the fact that a specialized wheelchair is indeed more eye-catching to others. However, sadly, the number of these parents is lower. And after they’ve picked out a stroller suitable for the child, they are heard to exclaim: “Wow, it’s so cool, so easy to carry and to manage the curbs!”
As a physical therapist, I can say that it is necessary to carry the child in a specialized stroller because he/she must be positioned correctly therein. And I think that’s nothing to be ashamed of. Children and people with special needs exist, and there is no way to escape the fact. They are all around us. But how this fact is perceived by others, in my opinion, is our problem to a lesser extent only. This must be the problem of those, who can’t just acknowledge and accept, or just don’t know-how.
If someone offers you help, and you really do not need it, then just thank them politely, smile and say, “It is not difficult for me. It is okay, we’ll manage”. And if somebody offers you help and it is useful and appropriate, you should not refuse it. Also: why must we be sometimes too proud to ask for help when we need it? If you notice a person staring in your direction, it might mean they feel somewhat awkward, and perhaps they would like to help but don’t know-how, then you can just ask: “Could you help me, please?” And, basically, and most likely the answer will be: “Yes, with pleasure”.
Author: Zakhar Kozii