It has been a busy summer for Brandon and me. Brandon has worked at the Dripping Springs Library, started a personal shredding business, attended camp at the Texas School for the Blind and Visually Impaired, participated in the VSA Arts transition program, went to the beach for 1 week and has endured the entire summer with me trying to get our new condo liveable.
This is our last week in Drippping Springs where Brandon has lived most of his life. My brother (the one who lives in Italy) is moving into our house in Dripping Springs and next week we move into the condo one week before school starts. It has been a long summer or gutting the condo and repairing it. Last week we stayed at the condo one night. Brandon loves loves loves baths. There is only one bathtub at the condo. Knowing that Brandon loves baths, I brought all his favorite bath items to the condo. Brandon jumped into the bathtub. I started the water, put all his bubble bath stuff on him and in the water and he was very happy. I went into the bedroom and in about 3 minutes I heard the water turn off. I went to check on him and there was no water coming out. I asked him why he turned off the water and then realized that he did not turn off the water, the water just stopped. The bathrooms are really barely usable because of all the construction. So I am hoping by the weekend almost everything will be working.
After we left the condo this week, I told Brandon that we were not coming back to Dripping Springs to live after this week and we would be living at the condo. Brandon's as usual insightful response was "and then?". I had to laugh because for the first time in a long time I could not answer what will happen after we move into the condo or the "and then?" of the future. I just know that for right now this is the best place for Brandon. It may drive me a little crazy because I love working in my garden and being outside my house, but I will adjust with walks to Zilker.
The whole point of this move is for Brandon to learn how to live as independently as possible, learn how to find his place in his community and to find a meaningful job where Brandon can be proud of his accomplishments and build relationships. It is really tyring to build a good life for Brandon to be the best he can be just like all of us want a great life. So I am not really sure yet how to answer the "and then?" but hope Brandon enjoys trying to develop his own "and then?" for now and in the future.
On another note, Brandon has been having more seizures and I have been able to see them directly, learning more about them (from the five books I am reading), and trying to determine how these will have an impact on this life, especially this next phase of his life. I have determined that most of Brandon's seizures happen at night while he is asleep and in the morning after he is awake (around 9:00 to 9:30). The interesting thing is that they also happened at school around the same time. I think Brandon's seizures are worse in intensity than before. Because of this I am trying to get Brandon into the Blue Bird Clinic at Texas Children's for a second opinion. Brandon needs to get the seizures under control. The more he has, the worse they can get.
I am writing this because I want everyone to understand the issues surrounding transition, even medical transition for kids who have become adults. I am not sure if the Blue Bird clinic will accept him because he is now 18. He was already turned down by Scottish Rite's neurology clinic because he was not an established patient for that clinic and he is not 18. There is really not a great plan for kids like Brandon as they transition into adulthood for medical care, especially in Austin. He is actually very lucky because his pediatrician will continue to see him until he is out of school (22) and his gastroenterologist will see him indefinitely. But that is because there really is no one to treat him otherwise. So I will update everyone as will try to find some great second opinion options.
So on to our move. Brandon does have some exciting work opportuinites coming up so I will update as those progress. I will also give an update on Brandon's network.
More later
Leah
1 comment:
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