Tuesday, April 6, 2010

Another update!

I want to start off by apologizing - I am afraid I might be all over the place today with my thoughts and for that I apologize.

I really wanted to blog last night about what took place but in the end I was so upset and depressed, that I went to bed early and said the heck with it.

Yesterday morning we had another team meeting at the hospital for Trevor. His case manager wasn't able to be there, but one of his support workers was able to come and the supervisor for the other support worker was on the phone for the meeting. The Dr. that was filling in and was supposed to be gone was actually still there yesterday. (The new one starts today.) The social worker briefed us on Trev's behavior during the last week - he's had some issues with transitioning (mainly because he doesn't understand the concept of time), and that has resulted in him having some time outs in the time out room. He's also been refusing to wear his nighttime pull-up as well as to use the bathroom before bed. I didn't honestly realize he was still wearing one since he's been on the medication to stop the bed wetting.

So this Dr. doesn't feel he has a mood disorder or IED, he feels this is all just Aspergers/ADHD related. He has put Trevor on another medication that he's had good results with - it's to help curb in the impulsiveness. So he's on a mood stabilizer, this med for the impulsiveness, the bed wetting med, something for the ADHD and his sleep medication. So much for thinking he'd be on less meds by the time he came home. Sigh....

This Dr. felt that they have done all they can for Trevor and that he's being affected too much by another child there - Trevor is easily influenced by others and the Dr. even went so far to say that at times Trevor is provoking this other child to act out by his own reactions. What I tried to get them to understand is that this is nothing new. Trevor is very much affected by even Vic's behavior - you know Vicky is at the age of temper tantrums - the terrible 2's and when she has one - it can end up causing Trevor to have one. The idea that this is happening up there at the hospital is not new. The Dr. doesn't seem to have much faith from what he said in the medication the first doctor put him on. And he thought that the med he put him on, needed to be upped.

We discussed the possibility of Trevor coming home and what services will be in place for him when the time comes. The Dr. felt that Trevor would do better at home. Things need to be in place before Trevor can come home - things like housing maintenance installing the deadbolt locks on our doors - something we've been waiting 3+ weeks to have done.

After the meeting, we stayed and talked to the social worker for a bit. One of the services Trevor gets at home is called "Section 24" - (though I think it just changed to Section 28 or something or other). This person comes in and works with him (and us) in the home and in the community for so many hours per week. I have some issues with this:

1. We were granted 12 hours - up to the point that Trevor was hospitalized, his worker was only coming about 6 hours a week. Why are we being shorted 6 hours? He needs the help, so why not give him what he's entitled to and granted by the State? I did discuss this with the supervisor and her suggestion/solution was to possibly add a second worker to come in to make up the hours. We talked with the social worker yesterday and we all feel that adding another worker into the mix is going to be too much for Trevor. As it was, his worker was getting here 15 minutes before he even got home from school - so that was 15 minutes being wasted and then more time wasted when he got in and ate his lunch. The time actually spent working with Trevor, was greatly reduced. I finally put my foot down and asked them to come an hour later, in order to give Trevor time to come home, unwind and have his lunch.

2.The other issue we have is this - we saw an advertisement in the paper for the job of the person who comes in to work with kids like Trevor. The only requirements are 18 yrs of age and high school diploma. So the people coming in to work with Trevor or take him out in the community, are not required to have any sort of schooling or degree or training in working with kids like Trevor. That is very concerning to us. This is a person who is coming into our home to tell us how to change Trev's behavior but they have no background in this? etc? I was mistakenly under the impression that these people had schooling/degree in these types of issues. This really bothers me. I, as his mother for 6 yrs and 34 years old struggle daily with him, what 18 yr old is going to be able to come in and be able to do what needs to be done, when they are barely an adult themselves?

The Dr. gave us a 4 hour pass so that we could take Trevor out to assess how he is doing. Can you believe it was his first time out in a month? His first time feeling fresh air in a month...wow! He was so excited! We took him out to lunch at Subway....there aren't many choices up there in "small town America". And then we went into a couple stores and let him get a "treat" - a tiny notebook and pen. He's not allowed to have much while in the hospital, so his choices were limited. Unfortunately, we were only able to have him out for two hours. See, Victoria was being watched by my mother, and she had a ladies church meeting to attend, so we had to get back home to get Vicky. To say I was upset is putting it mildly....I can't understand why one meeting couldn't be missed, so that we could have more time with Trevor. You can't imagine what it's like to have your child away from you for so long and you finally are given the opportunity for some good quality time and then you can't have it. I honestly will never understand my family and how they treat others. Lately it's been a struggle to get anyone to watch her ....they expect us to travel 1.5 hours for our team meeting and then come right home without spending time with Trevor. Oh that's right,we are supposed to "demand" they change their visiting hours to accommodate us because my family is too self centered to watch Victoria for any longer then they have to. I remember when we were talking about moving up here, and all I kept being told was how they'd watch the kids - how this is what family does - help ....it's such a laugh ....it's like pulling teeth to get any of them to watch the kids. And when they do, it's all about what they get back in return. Nothing is ever done just out of kindness.

So, we have another meeting on Friday morning - there is the *slight* possibility that Trevor could come home. It is all dependent on what the new doctor thinks about Trevor's case and if the locks are put on our doors here. Until then, everything is up in the air!



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