Working For Brandon

I am gearing up for a new week. Brandon and I will be busy in the next few days. There is a lot going on and all of it is for Brandon’s future.

Brandon will be going to day program tomorrow, Thursday, and Friday. Last night, when he went to bed, he was doing the angry jumping in his room. We do not live in a huge house so everyone knows when Brandon is angry.

We do our best to ignore this behavior, because that will typically work. However, at 11pm, it is harder to ignore. His brothers are trying to sleep. Steve and I are trying to just have some time to talk about other issues (or watch Picard or The Marvelous Mrs. Maisel). And Brandon’s angry jumping makes all of those things a bit difficult.

So…last night, I went to his room, opened the door, and asked him “what is the problem, why are you mad?” His response was “no school”. I reminded him that he has two more days of school and then he will be done. I also reminded him that he is going to the mall today with Lorie and to his favorite cookie shop.

He looked at me, said “yes”, climbed back in bed, and we didn’t hear another peep out of him. He just needed a reminder that school is almost done. I sometimes wish he would just ask instead of all the very loud jumping. We will work on that.

We get to meet the new case manager on Wednesday. I am really looking forward to this meeting. There are state mandated and state created tests that have been done with Brandon. The scores on these tests determine what services an adult with a developmental disability in Missouri can receive. For whatever reason, Brandon has scored very, very low on these test which means he is on mile long wait lists.

When talking with the case manager, who had already read his plan, she indicated she does not understand why Brandon scored so low. Brandon can not be left alone. He is unable to bathe himself independently. He can not cook his own meals (except for the cheese in a bowl). He doesn’t drive. He is not able to be competitively employed. He can’t do his own laundry. If anyone looked at these test results, they would think Brandon could be living by himself with minimal supports.

The case manager and I will be going over those tests with a fine toothed comb to see where the problem is. We will be reviewing his plan to see if there are updates to be made. She has scheduled two hours with us. That is the longest time a case manager will have met with us in years.

And finally, Brandon has an appointment with his psychiatrist this week. We have been working on reducing some of the medications Brandon takes. For, the most part, that is going well. I almost know what the doctor is going to say. He is going to suggest we see how day program goes and then we can start decreasing some of the meds some more. Of course, he will be right. And I will listen to him.

No two people with autism are the same. But aren’t we all different in our own ways? Brandon’s needs are unique to him. Just as my other children’s needs are their own. Finding a way to make it all work is really, really hard sometimes.

What is different now? Why am I feeling so positive about Brandon’s future right now? I finally feel like all of Brandon’s team members are working for him. And that makes all the difference in the world.

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