Group Homes

I know so many parents of kids with disabilities worry about what will happen to our kids when they grow up. If we are not able to take care of them, what will become of them?

In one way it is a good worry to have. I know this is an incredible thought! But I was reading blogs today from parents of kids with Niemann-Pick who have watched their children lose all skills and either have watched or are waiting for their kids to die.

So I am glad that my kids are gaining skills, no matter how slowly, and have the potential for a normal life span.

On the other hand, I wonder how Nathan will be? If we will be able to help him control the thoughts and sensations that overwhelm him and cause him to throw and break things and throw himself on the ground causing horrible bruises. If he will be manageable as he grows bigger and stronger. If we will be able to help him to adequately communicate his needs in reliable manner.

And someday, if all goes right, we will die first. What then? Our family does not seem to be an option, for varied reasons. Some unavoidable, some that cause disappointment in the person who is uninterested and uninvolved.

In my job as a physician, I do home visits. Because I am also involved in the care of developmentally disabled adults, I sometimes visit them at their group homes because they are more comfortable there, and it is often easier to get an exam when they are in their comfort zone.

I did one for 2 guys the other day during supper. There were six or seven residents there along with four or five home aides which is higher ratio than usual, but because one resident lives in another house and because of the supper there were more than usual.

I know there is a lot in the news about these homes. But what I saw there was a family. Laughter, teasing and love. One of my residents has to be fed, and that was just done. No comment, no complaining. One was very reluctant to get his flu shot and PPD. So the aides coaxed and cajoled until he was willing. No yelling, no recriminations. And if he hadn't been willing, I wouldn't have done it. JB is BIG and I'm not willing to risk bodily harm or have him even more reluctant to cooperate with me! When he cooperated there was a lot of high-fiving and 'way to goes!'

If I can't take care of my kids, this is what I want for them. I felt so comforted leaving that house knowing that the potential is out there.


  1. This is so nice to read. Because I'm an older parent, I know my twins will be in some type of facility some day. They won't be able to tell anyone how they are being treated, so I have to have faith that they will end up in a place like you describe.


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