At my request, Kellen's case manager from the state came to our house on Friday to get an update on his status. I always find it difficult to explain Kellen to someone who doesn't live with us. Kellen is a complex person and what you see is not what you get. He is a combination of interesting ingredients. He is a mixed bag.
I think the most perplexing part of the afternoon we spent together was when we looked at her computer at the section of most "prominent" behavior. That was a hard one. Last year I had chosen "uncooperative". This year I had a hard time choosing between "uncooperative", "irritability and agitation", or "compulsive and repetitive". The challenge in supporting Kellen is the combination of things. It is irritability and noncooperation that turns in extreme agitation with a bunch of compulsive repetition to make things downright annoying.
It was a three-way tie, but I could only pick one. I think I finally settled on "irritability and agitation" because that is probably the behavior which could potentially get him in a heap of trouble.
Then we talked about Kellen's hospitalization and what I learned from that experience. This was the first time since Kellen was a newborn that he has spent two weeks away from us. It showed me how much we do for him. We assure that he takes a shower and stays clean. We monitor his emotional state and try to make adjustments as needed during his entire waking hours.
This led into a conversation about what it would take for Kellen to thrive after he moves out of our house. My dream for him is to be able to live in his own place with as much support as he requires. I would love for him to have a committed and talented support staff who will be able to work with us to make important decisions on Kellen's behalf. People who will take excellent care of him...in fact, care for him like he has been cared for in our home. People who will be creative when it comes to thinking about what could improve his life and take his personal growth to a new level.
As we were talking, we both realized that Kellen has been raised in a home where he has a registered nurse (dad) and disability advocate (mom) on "staff" seven days a week. We work for free. Not only do we work for free, but we love him....and we have almost 18 years of experience in caring for him
Duplicate that.
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4 comments:
I dont think you can and thats why its so hard.
But you still have to work towards that dream as sometimes dreams do come true.
Of course, you cannot. But as a society we can hope that group homes, or dormitories can be set up for adults who still need some supervision, but can also handle some freedom. We have colleges which are serve as half way houses for our top kids. Kids who need this sort of infra structure throughout adulthood are shorted. It would could work if society made it work. Even then, it would not be the quality of what parents like you can provide. However, the emotional involvement sometimes is detrimental to kids who can hang onto this and refuse to let go.
I'm a long way from having to think about independent living situations for my daughter since she's only 4 (I'm having enough trouble thinking about Kindy!). Right now I'm in the "maybe I'll just outlive my kid by one day" state of mind. Probably not a healthy outlook!
J- As much as I seem off in my own world, your words and blogs about Kellen are always extremely important to me. I have no idea what path W. will lead me down. Sometimes I see very similar traits in W as in K. Even with the age difference. Can I say I see similarities between a 17 year old and a 3.5 year old?
Hang in there. You are making difficult choices and we are all thinking about you. It's interesting to me how you've felt about the whole gaurdianship issue. Perhaps because of my divorce I have already been slapped in the face with that one. It's a question I am asked on a regular basis. Are you the legal gaurdian... Yup. Sigh.
Muah. Be easy on yourself.
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