Monday, April 15, 2013
And 8 out of the 11 children living here have a developmental disability.
Only 3 of the 8 developmentally delayed children, have a physical disability. We don't even notice physical disabilities here because the Developmental disabilities are so significant!
What's a little thing like not walking when they mainly can't communicate. They can't even tell me, if they're sick, or tired or hungry!
We have 7 children in diapers.
Five of them treat their diaper as an activity waiting to happen! LOL!! Like our nine year old who digs in his diapers and spreads what he finds onto himself, the furniture and us.
We have a 17 yr old who can change his own depend, but does so sitting naked on the linoleum floor spreading the contents! O.K. sorry TMI. Sometimes the way "I" think it should be done, is not the way they do it.
You know the old saying~ "Choose your battles!" ;o)
But she doesn't tell me because, well the effects of alcohol robbed her of reasoning. (We know this so well from our 37 yr old son Andy who also has FAS) And to stop the flood herself, she throws full rolls of paper towels onto the mess, one still in its plastic wrapper. And runs to the basement for more! But she will never call for help. (Why call for help when there are more paper towels in the basement!)
I had to figure out something was wrong. She doesn't know how to ask for help. She won't ask for help!
Two hours later after disinfecting everything in MA's room and the kitchen.
I'm in the minority here.
There are only 5 of us out of 15 living here who think hygiene is a priority! (And 3 of us out of those 5, are 10 and under. So its still kinda iffy! :o)
Before today, I thought maybe I could help the 12 yr old's confused reasoning. I decided to explain to her what she should/could do, using examples. Like "what would you do if....happened" and "what should you do if... happened".
We started simple. Things like don't answer the phone if mom is gone. But if you do, don't say mom and dad are not here. Say they are busy. We practised. First time I left- worked like a charm. Second time I left she answered the phone once. Two people called and she couldn't remember which one she answered. The caller ID told who they were. She said she answered because she thought it was ........me?? Hmm that answer doesn't work when she can read the caller ID and see that it did not say me!!
Nope. Our "what if" situations didn't work, didn't even help, and then I was just as confused as she was.
But I will admit. The days are long, even if simple. And some days I dream of a day without fecal matter consuming my every thought. And then a child hugs me and I am reminded why I love my life. Why my life isn't really a metaphor for fecal matter. LOL!
Physical disabilities can get therapy and adaptive equipment. They are "fixed" to the best of our (PT/OT, child, me) abilities.
Developmental disabilities not so much.
(The pictures are of Kitty age 9 helping her brother Noah age 9 recover from his surgery!)
I love how they put up with me!