Another fact about me…I have a Special Needs Child. What does that mean? Well the terminology has changed due to negative connotations of educational and other types of labels. There is an intensive hands on training that comes with this unique situation.
Rachael, had Spinal Meningitis when she was 2 weeks old. I love her. (Just so the other kids know, I love all my children; a bunch, whether biological, adopted, step or whatever. Some don’t understand it yet, but when they have their own kids they will).
Rachael knows what love is even though Rachael has the cognitive level of a 3-4 year old (but she is 26). She has Epilepsy, Cerebral Palsy, had brain surgery at age 16 which resulted in Left-sided Hemi-Paresis. It saved her life. And it changed her mobility.
In English? Rachael had an illness at two weeks of age that resulted in brain damage that left her with muscle problems, and seizures. When her seizures became worse (at the onset of puberty) and life threatening, brain surgery was the only option left. At Cleveland Clinic they disconnected the two halves of her brain, the good from the bad (the damaged part), which stopped the electrical storms (seizures from the injured or bad part from interfering with her life, turning her into a zombie). The surgery on the right side of her brain, affected the left side of her body (more on that in future posts). But the trade off was worth it. She can’t use her left arm but her life was saved and is so much better. She is present, happy, functional, her old self, no longer miserable, unhappy, feeling awful all the time.
If Rachael is sleeping, don’t even try to get her up (not a morning person!). If she’s outside, playing with toys, eating, and she wants to continue doing those things good luck!! Moving Rachael or trying to get her to go is sometimes akin to pushing a boulder uphill. As her mother, I have always won these battles (I must!), but for someone else it is an entirely different matter.
So back to Special Needs (aka Functional Needs) and emergencies. When mom (me) had to be at work there was a babysitter, or Home Health Aide, or family member. One of the things about Rachael is, she won’t do what you want her to when you want her to do it. And she can’t do stairs well.
So I was faced with the problem of being at work at night (or day) and there being an emergency that someone watching her might have to deal with. What kind of emergencies? In our neck of the woods, a house fire, tornado, storm, or something like that. So I came up with a plan. Bad storm or tornado, requiring a trip to the basement. How to move a sleeping, uncooperative boulder to the basement? Well we decided if she won’t get up the bedding would go with her. It was safe and easy to take all the bedding with her on it, off the bed, dragged through the house and a cushioned bumping down the stairs (carpeted) to the safety of the finished basement where the other kids bedrooms are. Now getting her back up would be my problem when I got home. No big deal, for mom.
It is these things that parents of special needs kids need to think about. When they are small you can pick them up and throw them over your shoulder if they have a temper tantrum, or you have to hurry for safety reasons to get somewhere. When they grow up, it’s a whole different ball game. You can’t spoil your special needs children, or coddle them. They need to know what the rules and expectations are, because if you don’t spell that out early, it can be huge behavioral problems later. Rachael expresses her own opinions and wants to be obstinate, but in the end she knows that Mom loves her, and for her, mom always wins.