Sunday, June 27, 2010

About Our Son, Clark

Good Morning Friends. Yesterday I said I would post some photos of our son, Clark, and give you a bit of information on his life. Which is such a big part of our life!

Well, as you can see he graduated from High School. That is such a big deal for a child with a disability. I think one of the most difficult things about this event is that he growing up and for me that has been tough. Not from the boo hoo point but from the point of 'what is he going to do with the rest of his life?'

If you have never had anyone in your family with a disability this might be difficult to understand. But, in case you did not know, the school is responsible and mandated, federally, to provide opportunities for job and day program exploration. This means that they must go out into the community and see day programs and get evaluated for jobs. This was not done with Clark. Something for which we are very angry about.

We found out in February, at his last IEP, that there was no plans for potential jobs or day programs because of his health and other 'obstacles'. The obstacles were the medication schedule, his tube feedings (he was on continuous feedings) and hygiene issues. Well, you can't do anything about the hygiene part he wears a diaper because he cannot sit on a toilet. But, you can do something about the feeding and medication components.

I went to Clark's doctors and asked for help with solving the problems.....had that accomplished by the end of the next week. Came back to the school and demanded that they help us in the time he had remaining at school. They were able to get him to a job site, get evaluated and now he is on a waiting list. But, he still did not have anything else lined up for his days after school.

One of the things we had been working on for nearly 2 years was to find an appropriate home in the community for him to live in instead of the group home he was currently in. The agency we were working with lost their director at the end of in he quit. There was no explanation as to why, no contact with him answers and left us feeling very uneasy.

Wayne and I gave it a lot of thought. What we came up with was this.....he has been living at this home for 3 years. Granted it is not the perfect home but, I don't think that exists and at least we know how these folks operate; we know what to expect. As Wayne says, "It is better going with the Devil you know instead of the Devil you don't." While Clark would be in the new home and that might be lovely, Clark would be starting all over again.....learning curve with the new staff, new staff he does not know, no plans for getting out into the community, etc., etc., etc. So, we decided to keep him at the home he is in currently.

We also decided to start talking to other people/agencies that might be able to help Clark get into the community instead of getting stuck in that home day in and day out. It was pretty dark for me for a few months.....I cried a lot. I worried a lot. But, then I got down on my knees and prayed for guidance and strength to make the best decisions for Clark. I feel that God must be guiding us else why would that door close on the school's help and the getting Clark into a home that we thought he needed. I think God has a different plan.

I think that God wants Clark to be the light at that group home. He is so happy always, despite all his issues. He is the most cognitive resident there. He is the most independent resident there as well. Maybe instead of fighting it, go with the flow.

So, here is the update in a nutshell......because I have babbled on long enough......we are re-decorating his room to fit his Construction tastes, we are exploring Day Programs (after having rewritten his Personal Care Plan to state that he needs to be out in the community), we are getting a Vocational Rehab. consult and we are on the waiting list for his job. Until we can find something out in the community, he will work on things at the home in their day learning his phone number, complete address, to be responsible to tell others where he is going at all times on the facility grounds and doing little jobs as a stepping stone to the bigger one.

It has taken a lot of fighting for him.....yes, I am tired of it.....yes, I would love for everything to be in place and go smoother than it has for years. But, I have to keep thanking God for Clark being in my life, for keeping him so healthy and for giving me so much help to fight for him. Because I believe that I am not just fighting for Clark but for others in that facility too.

About all the pictures.....the cap and gown ones are from his Graduation. The girl in the pink is Brittany, his girlfriend at school. I imagine that since she still has two more years at school, the relationship will probably die due to lack of participation on her parents. Life goes on.

The other photos are of Grandparents and us at our recent zoo trip. A gift from his Grandparents (Wayne's folks). We had a great time...good diversion to the hum drum of Clark's daily life. Watched the Lions and baby elephants and sweat like pigs that day. But, it was very nice to all be together.

Thanks for listening to me. I do appreciate you so very much.

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