Sunday, March 15, 2015


He was supposed to stay a child forever. I know "all parents" pass this benchmark as their children turn 18 and go off to college or find jobs, etc., but it is different for us caregivers. And, no, it's not a mourning or grieving process. Each of us knows by now, more or less, how our child will fit (or not fit) into the world. So I'm not shocked that Robert will not go on to college. I don't feel unhinged or upset about the fact that his peers are.

What concerns me is his eventual departure from school at about age 21. School provides normalizing social context. And then the real world steps in. The real world that some acquaintances and other truly uninspiring or unpleasant people or relatives have been tsk-tsking you about for some time now. Now is the point at which your child becomes truly isolated. And how will you fill the gaps?

That's the real "plan" in transition planning. The rest is, well, necessary, but just the exoskeleton. If the State of Maryland does anything for Robert, it will be the provision of medical and nursing care. Some cockamamie day program that has nothing to do with including him in the society around him. Unlike other children, no other relatives can really take him out or have him over. There's too much specialty care involved.

But he was supposed to stay a child. Where I could protect him, where I didn't have to expose him to ugliness. Whatever we've done for him, we've made him, I think, feel good about his life, about himself, about his personhood.


Elizabeth said...

I think I'm going to just sit here and cry.

Wouldn't it be cook if we could all meet somewhere and form our own interesting world?

Jeneva Burroughs said...

You don't have to think you have...we know you have! Robert knows he is loved unconditionally and therefore he does feel good about himself, his personhood, and life. We can see it. It shows in his face and his smile. You & Roger & Edith provide him with the love and support that makes him such a delightful young man!Jeneva

Catherine said...

There are adult programs in some areas. Quality and activities vary as they do for schools. Socialization with the "mainstream" public is sparse, but when I worked in any number of public schools the mainstreamed and the the mainstream did not do much socializing anyways, other than those children who were good at communicating and at social skills. Even among the mainstream, those who were not good at social interactions did not get much positive socialization. Painful all around. Frankly, I would not have placed a child with special needs in what are and were considered top public schools, and in fact, withdrew my own children who did not have special needs from them and paid painfully out of pocket for expensive private schools that did much more for them and for me. I advised the same for a number of friends and acquaintances who had children with special needs and without an exception, the experiences were better in the private programs where the focus was on their children's need and not the mid stream.

There is that gap in time between coming out of school and going into nursing homes or care facilities for the aged when it comes to what to do with those who are not able to care for themselves. The solutions are highly unsatisfactory, but then so are the institutions at both ends of this spectrum. I know that "make work" at low or no wages is now panned pretty much universally, but I also know that for many that was the only work possible and gave some direction, activity, purpose in those young to middle aged years. The problem there is that too many who could have functioned in a true work environment were so directed. So entire programs dried up leaving those who could not make the step up were left with nothing.