Saturday, February 7, 2009

Can't seem to let go

As I have mentioned a bit... my daughter is 30 now, and has multiple handicaps. For those who are not familiar with her.. she has cerebral palsy that effects mainly her left side, she is totally blind (as of 4 months ago) and she also is developmentally delayed in most areas.... In other words, I'm one of the lucky ones in that she can do quite a few things but needs some assistance in little ways in most every thing she does throughout the day.

I have made the choice to keep her at home and raise her instead of handing her off to some kind of group home that will shuffle her around until she is just one of the masses... but the older she gets, the more the "agencies and their representatives" are inferring that I am just an over-protective mother that needs to learn to let go. I have held strong to my beliefs that no one knows her the way I do, no one protects her the way I do (she is such an easy mark, so gullible and so emotionally innocent) and that the best place for her is with her loving mom. Am I wrong?

I was raised for a part of my childhood in foster care.. and while I loved one mom that I was lucky to get (thank you mom Yadon!) for the most part... my foster home experience was full of neglect, abuse (of all kinds) and extreme sadness. I equate disabled group homes with that experience because the few I have been in, I viewed "clients" sitting alone in chairs staring at nothing, laying in their beds in rooms with no company, or herded around in groups. I feel terrible that I am talking in such generalities.. but that is my experience.

Amy's days are full of love, and someone (okay me) who says.. "Does that shirt actually match those pants?" "Do you realize your shoes are on the wrong feet?" "Oh come on.. I know you can speak clearer than that" "Lets do something different with your hair this morning." Someone who reads articles out of the newspaper to her, points out if a show is on t.v. that she may not have noticed, offers to go swimming with her and double checks to make sure "everything" is covered properly before she walks out the door. We shop together, plan meals together, talk baseball together and take drives and laugh together when we get lost..

As I said earlier she needs little "helps" throughout her day... from assistance in dressing, fixing her hair and "personal" needs, to cutting her food into bite sized pieces, and helping her dial the phone, to holding her hand when she steps out of the house. She doesn't have mathematical abilities, and until she lost the last of her sight.. could only read simple words in a 2-3" size, and write a simple signature of Amy A. We have tried some of the assisted work programs, but the assistant always ended up doing all the work, so we gave up on that..

While there is a tiny part of me that would love to have an adult life without having to be "needed" all the time, to have alone time with other.. adults. I can't imagine the guilt of knowing that I had time and love... and that my daughter was living with some group home parent.. who most likely feels over-worked, under-paid and under-appreciated.

So am I over-protective? Probably but... I have a 30 year old daughter who is a non-smoking, non-drinking, non-cussing, virgin who has never suffered abuse. Would she be all those if she had been handed over to a group home for her care? If I were to let go of her... and any harm came to her... I just could never forgive myself.

What would you do in my place? Do you know anyone who is in a similar circumstance? What did they do? How did it work out?

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