This summer I participated in the Texas Parent to Parent conference in San Marcos. I decided to spend the two days in the "Transition Summit" oprtion of the conference which included many topics on transition facilitated by Rosemary Alexander (former AISD). Rosemary and I have known each other since Brandon was 1. She worked at the parent organization associated with the ARC of the Capitol Area which then formed into the Texas Parent to Parent. As many of you know, I was on the Board of Texas Parent to Parent for several years. After serving on many boards over the years I decided to only give my time to those I really believe have a direct impact on the population they serve. I really believe Texas Parent to Parent serves their population, including this parent.
I presented a couple of topics at the "Transition Summit" on networks and SSI. But I also did a great deal of listening and thinking of ideas on how to move forward with Brandon's transition and to try my best for Brandon to have a good life. In Brandon's plan for the future, he said that he would like to live independently with a room mate or his wife (scary). This is his goal in five years from when we developed the plan. After talking to Rosemary and the group, I realized that I needed to start letting go. I needed to allow Brandon to have some independence away from me. I have worked into Brandon's plan of care 1 weekend a month of respite. Brandon stays at the condo one weekend a month with a choice of two aides who have worked extensively with Brandon. I will be away from the condo for the weekend.
Last weekend was our first respite weekend. I have to admit that I do travel for work on occasions for short periods of time and occasionally I take a vacation trip about every other year. These are all where I am away and Brandon is in school of has other activities. Very rarely do I have anyone care for him on the weekends. Worse than that, this is the first time in 18 years I have taken a whole weekend where I am staying at home. However, this is what Brandon wants for the future and having baby steps to land there seems like the best way to begin the transition.
For this last weekend I stayed at the condo and Brandon stayed in Dripping Springs with Ross, one of his aide's. They went to the movies, had pizza, stayed up late and watched videos. I didn't know what to do with myself. I kept thinking that Brandon was here in the condo and for Friday night and Saturday I didn't leave the condo. Finally, I flung myself out the door convinced that it was okay to at least get some groceries. Luckily, Saturday night some friends had a dinner party and then I went out to listen to some music with another friend. It all seemed so foreign to me not having to rush home to relieve someone. I realized this transition even on the weekends may take me a while to make the adjustment, maybe more than for Brandon.
The weekend was cut a little short because I have friends from Bastrop moving into the Dripping Springs house after they lost everything in the fire. They have 6 dogs and a cat and were staying in a hotel. Two of the animals have burns and they just wanted everyone back together while the figure out what they want to do next. So my friend Kate, Ross, Brandon and I madly tried to clean up the house enough for the entire family (including dogs and cat) to move in on Monday. Believe me, I was ready for the weekend to end on Sunday.
I am already planning the next respite weekend and I am tyring to come up with something where I am already out doing something I cant when I am with Brandon. Baby steps for us both.
I also signed Brandon up for "We are the Chorus". I have been watching "We are the Chorus" for some time and love the spirit of the group. http://wearethechorus.org/ Brandon went to their first rehersal and loved it. I really wanted Brandon to start doing some social activites to hopefully develop friends. "We are the Chorus" is right down the road from us so it seemed like a natural fit.
Brandon has been seizure free for two weeks, his lungs have cleared and he really likes school. Right now - life is good.
More later.
Leah
3 comments:
Hey Leah,
funny thing--Rosemary just got us thru our 1st Transition employee training so we can say the exact thing to parents when they call. Luckily I went thru the pilot program a few years ago when she was developing all of it. Just in time for Jess to turn 18. gotta talk to you sometime about GI's, seizures etc.!!!
Patty G.
Thanks Patty. Yea she is inspiring. Call me anytime, maybe we can do lunch sometime. Since we are downtown I am close to almost everything.
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