Well I cant believe it. Brandon is now three days into living with his companion (Chris) and I could not ask for any better. I took Brandon to the condo on Sunday to prepare for school the next day and for him to live with his companion and work with Ross each school day. Brandon spent the night Sunday night, went out for supplies and food to prepare for the week and happily went to bed ready for school. Chris got Brandon up for the morning routine and took him to the bus stop. The school reported Brandon was happy and engaged. Chris reported Brandon was happy and Ross reported Brandon was happy. SO I AM HAPPY.
I told Chris that Brandon could call me last night. I was out running errands and rushed back to the house because Brandon is now using FaceTime to call me. I need WiFi to get a good signal. I made it back here at 7:45 thinking he would call at 8:00. A little after 8:00 Chris called and said Brandon told him he was good and didn't need to talk to me. WHAT. He doesn't need his mommie!!!!! I has so happy for Brandon but having mixed feelings for me. I think we are both transitioning and perhaps Brandon is transitioning better than me. Tonight I had Brandon call so I could check for myself. Sure enough. Brandon as very happy, not agitated and seemed very comfortable in his own home. I know there will be ups and downs as we continue down this path, but I could not ask for a better start. Chris thanked me for letting him work with Brandon and I cant thank him enough for being the great guy he is. It also helps that Brandon's bud Ross is there everyday and many people from the school are the same. I think it also helped that we lived at the condo for 1 year and had many respite weekends and travel days leaving Brandon with other people on a regular basis. For him this is the same. It is also great that Brandon's seizures have stopped. I think Brandon is very confident with his health at the moment.
Now we have to work through the logistics of making sure everyone knows the schedule, the updates, having the right supplies and medicines and getting Brandon out in the community. We already have Brandon ready for "We are the Chorus". The group will be working on Love Songs. Brandon has a social Wednesday and soon special Olympics bowling. We also are starting Brandon trying independent tasks such as laundry, making his own food, setting out clothes, shaving and brushing his teeth, etc. Lots to do and three years before Brandon graduates from school.
I am also working on trying to get Brandon working at the KOOP. Brandon will go back to the hospital for work this year, have swimming three times a week and social outings with the school group once a week. The Adult Transition Program has doubled in size this year with 1/4 of the special education students in the school participating in the Adult Transition Program. Many challenges for the school. Next year they will triple in size. So the more of a routine Brandon can have now, the better.
A little treat for Brandon. I bought Beach Boy tickets. He will love it.
More later.
Leah
Tuesday, August 28, 2012
Tuesday, August 21, 2012
ITS ALL GOOD
Since my last post I have once again realized what a great city we live in. Austin has a young progressive population and a fabulous workforce. I was very disappointed at losing the companion I selected for Brandon to live with him during the next school year. But I managed to move on and start the search all over. I decided to immediately post an ad and start the friends and family word of mouth search. I really want to post today to encourage others thinking about that next step with their young adult that this is very doable. I had over 40 qualified responses and at least 10 with fabulous experience and references. But I decided to go with a personal reference from the prior companion and another aide working with a family friend. I have hired Chris to live with Brandon next year as his companion. Chris has previous experience working with young adults 17-23 transitioning and all types of disabilities. He is also a musician. His personality is very laid back and kind of goofy. He is really a perfect match for Brandon.
Brandon is having a very difficult time these last few weeks preparing for the transition of moving back to the condo. Brandon rarely gets worked up about anything, except the Beatles (and occasionally Selena Gomez). But for the last two weeks and during our meeting with Brandon network, he has been very stressed. Last week Ross (Brandon's current aide during the day) came back from vacation. I asked Ross to take Brandon somewhere he could relax. We decided on going to a movie. When Ross come in to the house, Brandon burst into tears stating he could not leave the house. He used the excuse that he needed to see a Disney Show. I can't remember the last time Brandon cried. Even during H1N1.
Brandon's brother Patrick came to visit last week. We had a great visit. After Patrick left, Brandon sent a message to his brother that he was going to miss mama and he was sad. So this has not been easy and needless to say it is stressful for everyone. Last weekend Brandon and his current companion did a respite weekend and has started to relax just a little. Brandon set up his room and made the condo school ready. Brandon is still pacing some around the house and asking constantly what is going to happen on each day of the week, I hope by the end of Sept Brandon will get used to the routine and his stress level will be reduced.
I have talked endlessly to other parents who have transitioned their young adults to different living situations. All of them are unique. One parent told me about her son moving in with another family and they have worked out respite periodically through the month. One parent has partnered up with another parent and their children live with a companion, with attendants working throughout the day. Another parent is slowly moving out of her house, leaving her son and his friends to live independently. The financial portions of these arrangement all are very creative. For Brandon's new arrangement, Chris will move into the condo as a employee of Brandon's CLASS program and will benefit from free room and board. Chris will have access to Brandon's minivan (the one I leave for the aides to use when transporting Brandon). Chris will take over each evening at 7:00 pm from Ross and sleep at the condo with Brandon until Brandon gets on the bus each morning. This starts each Sunday evening and Fridays after Brandon leaves school he will come to Dripping Springs to spend the weekend with me. One time per month Chris will provide a respite weekend with Brandon staying with him. I have three additional attendants as back-up. In concept it all sounds good. But Brandon will have a big adjustment to moving away from his mom. So everyone think good thoughts that this all will work and Brandon will again be happy.
More good news - A few months ago I participated in a focus group at the University of Texas concerning children transitioning into adult services. I apparently signed up to volunteer our arrangement for a case study. Brandon was selected. So the University of Texas will be studying Brandon's transition this next school year and providing student hours for him to work on socialization, any behavioral issues and working with him on communication in the public. I am very happy to have the extra help. It takes a village. We have outlined all the skills Brandon should work on for the next year. I am looking forward to a more confident, socialized and independent Brandon in the future. So stay tuned. ITS ALL GOOD.
More later
Leah
Brandon is having a very difficult time these last few weeks preparing for the transition of moving back to the condo. Brandon rarely gets worked up about anything, except the Beatles (and occasionally Selena Gomez). But for the last two weeks and during our meeting with Brandon network, he has been very stressed. Last week Ross (Brandon's current aide during the day) came back from vacation. I asked Ross to take Brandon somewhere he could relax. We decided on going to a movie. When Ross come in to the house, Brandon burst into tears stating he could not leave the house. He used the excuse that he needed to see a Disney Show. I can't remember the last time Brandon cried. Even during H1N1.
Brandon's brother Patrick came to visit last week. We had a great visit. After Patrick left, Brandon sent a message to his brother that he was going to miss mama and he was sad. So this has not been easy and needless to say it is stressful for everyone. Last weekend Brandon and his current companion did a respite weekend and has started to relax just a little. Brandon set up his room and made the condo school ready. Brandon is still pacing some around the house and asking constantly what is going to happen on each day of the week, I hope by the end of Sept Brandon will get used to the routine and his stress level will be reduced.
I have talked endlessly to other parents who have transitioned their young adults to different living situations. All of them are unique. One parent told me about her son moving in with another family and they have worked out respite periodically through the month. One parent has partnered up with another parent and their children live with a companion, with attendants working throughout the day. Another parent is slowly moving out of her house, leaving her son and his friends to live independently. The financial portions of these arrangement all are very creative. For Brandon's new arrangement, Chris will move into the condo as a employee of Brandon's CLASS program and will benefit from free room and board. Chris will have access to Brandon's minivan (the one I leave for the aides to use when transporting Brandon). Chris will take over each evening at 7:00 pm from Ross and sleep at the condo with Brandon until Brandon gets on the bus each morning. This starts each Sunday evening and Fridays after Brandon leaves school he will come to Dripping Springs to spend the weekend with me. One time per month Chris will provide a respite weekend with Brandon staying with him. I have three additional attendants as back-up. In concept it all sounds good. But Brandon will have a big adjustment to moving away from his mom. So everyone think good thoughts that this all will work and Brandon will again be happy.
More good news - A few months ago I participated in a focus group at the University of Texas concerning children transitioning into adult services. I apparently signed up to volunteer our arrangement for a case study. Brandon was selected. So the University of Texas will be studying Brandon's transition this next school year and providing student hours for him to work on socialization, any behavioral issues and working with him on communication in the public. I am very happy to have the extra help. It takes a village. We have outlined all the skills Brandon should work on for the next year. I am looking forward to a more confident, socialized and independent Brandon in the future. So stay tuned. ITS ALL GOOD.
More later
Leah
Tuesday, August 7, 2012
A little loss of the dream.
It has been a while since I have posted about Brandon's progress with transition. Transition concerning his jobs and his desire to live as independently as possible. I was reminded today of all things possible by this great youtube video. Please take a little time and watch it. It was very inspiring for me, especially today.
This person I chose as Brandon's companion is referring another possible match, but I will also throw the net wider and repost the position. Wish us luck with the finding that perfect match and working through this diversion.
Leah
Friday, July 6, 2012
Friday, June 22, 2012
I fall for this every time. During Brandon's hospital stay we decided to take another round looking at Brandon's genetic profile to determine any possible diagnosis. I was thinking that I am close to giving up on a diagnosis. In a way it really does not matter, except if his condition is worsening. Right now Brandon is doing great. But in the hospital I wasn't sure, soooo I fell for it again and set myself up for another possible diagnosis or issue. Sure enough, Brandon's doctor called today and they have found a genetic deletion. One they have not found before. And one so rare they don't know that it means.
For those of you looking for a diagnosis, I have spent the last 3 years of Brandon's life reviewing genetic information, having more tests performed on Brandon each year as the genetic industry has evolved and finding more possible rare conditions maybe associated with Brandon. I will add this one to the list. But it never changes that when I get a new diagnosis or discovery of a new possible condition, I start all over with the loss of dreams for Brandon, anger, depression, searching for what it means and then acceptance. It is very exhausting. And today I took another path down this bumpy road. So I have to whine a little for now. After I have read every website I can and talked to everyone I know, I will accept and move on. But after 19 years the process never seems to change.
I think margaritas are in order this evening.
More later
Leah
For those of you looking for a diagnosis, I have spent the last 3 years of Brandon's life reviewing genetic information, having more tests performed on Brandon each year as the genetic industry has evolved and finding more possible rare conditions maybe associated with Brandon. I will add this one to the list. But it never changes that when I get a new diagnosis or discovery of a new possible condition, I start all over with the loss of dreams for Brandon, anger, depression, searching for what it means and then acceptance. It is very exhausting. And today I took another path down this bumpy road. So I have to whine a little for now. After I have read every website I can and talked to everyone I know, I will accept and move on. But after 19 years the process never seems to change.
I think margaritas are in order this evening.
More later
Leah
Monday, June 18, 2012
A little update. The last week in May Brandon and I spent Tuesday through Thursday at Dell Children's Hospital Epilepsy Monitoring Unit. We went back early Friday for Brandon's clinical trial visit. So perfect timing. It was Brandon's last week at school and a short week for me.
I on the other hand, have just now recovered. I just cant spend 1 weekend prior to a hospital admission with a sick kid (Brandon), then go inpatient with Brandon for three days and have little sleep. It really took all my energy. I remember plenty of 3 week hospital stays with Brandon when he was young with little or no sleep and I seemed to recover much quicker in my 30's. Now I am in my 50's and the recovery time is much longer. But it was worth it. Having Brandon on only one medicine for his seizures is great. Having him seizure free is even better.
Getting to the place I am today of understanding the results of this hospital visit was a little challenging. So, I have to regress here a little. One of my pet peeves with doctors is their attempt to give you results when you are not 100%. Over the years I have tried all kinds of tricks to help with this. I have brought friends with us to listen to the same thing I am listening to. I have brought a tape recorder. I have brought a video camera. Some doctors don't like to have the conversation recorded or they are very careful about what they say when you record. I have had some of doctors say they don't want to be recorded. So, Dr Clark choose the last day to discuss the results of the MRI and the EEG. But I was like a patient who had just come out of anesthesia and the physician wants to talk about the procedure he/she just performed. I was pretty out of it.
On Friday after the hospital stay we came back to the hospital for a clinic trial visit and I asked for copies of all the tests, read over the reports, googled over the weekend and decided its all good news. The doctor still wants Brandon to come back for a sleep study because he may have some apnea events at night, but all in all his EEG looks better than any of the EEG's of over 19 years. The other important thing I try to do over the years, is to keep all important medical documents concerning Brandon myself. I have books of records from 19 years. But I have three binders of important records. These new records will go into the three binders for the future. And maybe sometime in the near future I will have all of these as an electronic medical record.
Transition news - Brandon and I have moved back into the Dripping Springs house. We are going back and forth to the condo to clear out enough of my stuff to allow someone to stay with Brandon next year as he transitions to a more independently living arrangement. Part of the success for living more independent is getting Brandon's seizures under control. So with his seizures more under control, this will only make transition easier for everyone.
Brandon is at VSA Arts Camp for June and loving making movies and music.
More transition news to come.
Later
Leah
 |
| Brandon with therapy dog |
Brandon started out the memorial day weekend with a cold. I knew it could get worse quick and I didn't want to reschedule the whole week, so thanks to all you mom's for all those cold cures. I don't know which one did it, but it knocked out Brandon's fever and cold by late Monday (memorial day). Brandon and I got up at 4:45 am and left for the hospital after the medicine routine around 6:00 am. Brandon checked in for an MRI under general anesthesia. After the MRI the Epilepsy Unit prepared Brandon for the EEG by placing the nodes on his head. He went in for the MRI at 7:00 am but the hospital staff didn't call me back until 10:30 am. We then headed to the hospital room, our home for the next three days. The good news. Brandon had no clearly defined seizures, but he had activity indicating he is a strong candidate for seizure activity. The good news about that, is that Brandon's seizures are now fairly well controlled just on Keppra. The physicians removed Brandon from all medications except Keppra the first day, then off all medicines. We decided that Brandon's activity was well controlled with just one drug (Keppra) and the decision was made to remove Brandon from the other two seizure drugs. Really the only way to take this kind of risk with seizures is in the the hospital. Brandon has now been seizure free since his release and he is a different kid. Much more awake and engaged.
Getting to the place I am today of understanding the results of this hospital visit was a little challenging. So, I have to regress here a little. One of my pet peeves with doctors is their attempt to give you results when you are not 100%. Over the years I have tried all kinds of tricks to help with this. I have brought friends with us to listen to the same thing I am listening to. I have brought a tape recorder. I have brought a video camera. Some doctors don't like to have the conversation recorded or they are very careful about what they say when you record. I have had some of doctors say they don't want to be recorded. So, Dr Clark choose the last day to discuss the results of the MRI and the EEG. But I was like a patient who had just come out of anesthesia and the physician wants to talk about the procedure he/she just performed. I was pretty out of it.
On Friday after the hospital stay we came back to the hospital for a clinic trial visit and I asked for copies of all the tests, read over the reports, googled over the weekend and decided its all good news. The doctor still wants Brandon to come back for a sleep study because he may have some apnea events at night, but all in all his EEG looks better than any of the EEG's of over 19 years. The other important thing I try to do over the years, is to keep all important medical documents concerning Brandon myself. I have books of records from 19 years. But I have three binders of important records. These new records will go into the three binders for the future. And maybe sometime in the near future I will have all of these as an electronic medical record.
Transition news - Brandon and I have moved back into the Dripping Springs house. We are going back and forth to the condo to clear out enough of my stuff to allow someone to stay with Brandon next year as he transitions to a more independently living arrangement. Part of the success for living more independent is getting Brandon's seizures under control. So with his seizures more under control, this will only make transition easier for everyone.
Brandon is at VSA Arts Camp for June and loving making movies and music.
More transition news to come.
Later
Leah
Sunday, May 13, 2012
Happy Mother's Day. Today was a nice mother's day. I went with my brother, my mom and Brandon to lunch and then came back to Dripping Springs and worked in the garden. My friends Bill and Kim came out to stay for the weekend. Really a lovely weekend.
I found a fabulous mentor and companion to live with Brandon next year. Brandon, me and his network have worked for several weeks trying to find that right match. Thanks to such great connections Brandon's network has in the community, we were able to find someone with experience transitioning youth into their adult years and adult services. This has been a big relief for me because I really wasn't sure I could find that right match. This week I really came to terms that I am really looking for someone to help take Brandon to that next step in his life. Someone better at those skills than me. I have to admit I am really happy, but in another way I am also sad. I have worked so hard to get Brandon to this place it is hard to imagine life not centering around Brandon in the future. Instead I will watch Brandon from the sidelines and supporting his blossoming in the future.
So if you ask me how my mother's day went, I will tell you it was really lovely and I am happy. I may have a little sniffle when I say it, but it is a sniffle of joy for Brandon's future.
Happy Mother's Day everyone.
Leah
AND
I found a fabulous mentor and companion to live with Brandon next year. Brandon, me and his network have worked for several weeks trying to find that right match. Thanks to such great connections Brandon's network has in the community, we were able to find someone with experience transitioning youth into their adult years and adult services. This has been a big relief for me because I really wasn't sure I could find that right match. This week I really came to terms that I am really looking for someone to help take Brandon to that next step in his life. Someone better at those skills than me. I have to admit I am really happy, but in another way I am also sad. I have worked so hard to get Brandon to this place it is hard to imagine life not centering around Brandon in the future. Instead I will watch Brandon from the sidelines and supporting his blossoming in the future.
So if you ask me how my mother's day went, I will tell you it was really lovely and I am happy. I may have a little sniffle when I say it, but it is a sniffle of joy for Brandon's future.
Happy Mother's Day everyone.
Leah
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