Brandon in the water at Port Aransas
Brandon in a wave
Brandon taking this all in.
BRANDON LOVES THE BEACH
Monday, April 16, 2012
Friday, April 13, 2012
The Old Brandon is Gone
Last weekend Brandon and I drove to Port Aransas for a 4 day weekend. We met several people at the coast, stayed right on the beach and had a great restful weekend. Driving down to Port Aransas, Brandon immediately started listening to the Beatles. I immediately started thinking about 4 hours of Beatles driving down to the coast. Don't get me wrong. I love the Beatles. But I have listened to the Beatles non-stop for years. So, I said to the Brandon - "Brandon I want to carve-out an hour for Mommy to listen to the music she loves on the way to the coast". Brandon started shaking his head "NO". This went on for a few minutes and I said - "what ever happened to that sweet Brandon who would do anything his Mommy asked him to do"? Brandon said - "THE OLD BRANDON IS GONE"!!! Welcome to being a full blown teenager. But also - welcome to the new, interactive, lively, Brandon. After 17 years on the seizure medication "tegretol" Brandon is finally off the medicine. AND everyone has noticed that Brandon is awake, interactive, funny, talkative and healthy. It has taken 1 month to wean Brandon off the drug and increase other seizure medications to replace tegretol.
Brandon has really had uncontrolled seizures since being released from the hospital after recovering from H1N1 two1/2 years ago. The dosage of the tegretol medication was very high for the last year and when Brandon was admitted to the hospital last month the level was toxic. Tegretol is also an old medication and has many side effects. Many parents I talk to about this drug all describe their kid on tegretol as in a fog. But what I guess I didn't understand was how much in the fog Brandon was on this drug and how much it has impacted his health the last 2 1/2 years. Even Brandon's lungs are much better. He is not sleeping more than most teenagers and his seizure activity is 90% better.
So when Brandon said the the old Brandon is gone, I had to start laughing because he really is a new Brandon. And I like the new Brandon. Just FYI - he recanted a few minutes later and said he is still the sweet Brandon. But the old Brandon would have slept at least two hours of the ride and the new Brandon told stories (about the Beatles) the entire time.
A little more Brandon news. Brandon and his network of friends (including me) are in the process of looking for the perfect person to co-parent with Brandon next school year. As we move to the next phase of transition, I have realized that our current living situation is the perfect opportunity to prepare Brandon for living independently. Brandon and his network have developed a plan for Brandon's future and part of that plan is for Brandon to live independently with a roommate. So after Brandon completes this school year, we will move back to Dripping Springs temporarily. Then in August, Brandon will move back into the condo with a co-parent/roommate for the next school year. Brandon will come to Dripping Springs each weekend, holidays, etc.... but otherwise he will be in school or here at the condo working on being as independent as possible. The network is looking for that right person to be a good co-parent and move in at the condo. Let us know if you know of anyone you could recommend us to consider.
A little about me - I have lost 17 pounds, gained back about 5 and on the road to losing 20 more. It has been hard, but all I have is time and motivation. I am going to spend the rest of April focused on the next 10. I am not traveling the rest of the month and trying to be as active as possible. Thanks for those of you who have sent your encouragement.
On to the new Brandon and 10 more less pounds.
More later
Leah
Brandon has really had uncontrolled seizures since being released from the hospital after recovering from H1N1 two1/2 years ago. The dosage of the tegretol medication was very high for the last year and when Brandon was admitted to the hospital last month the level was toxic. Tegretol is also an old medication and has many side effects. Many parents I talk to about this drug all describe their kid on tegretol as in a fog. But what I guess I didn't understand was how much in the fog Brandon was on this drug and how much it has impacted his health the last 2 1/2 years. Even Brandon's lungs are much better. He is not sleeping more than most teenagers and his seizure activity is 90% better.
So when Brandon said the the old Brandon is gone, I had to start laughing because he really is a new Brandon. And I like the new Brandon. Just FYI - he recanted a few minutes later and said he is still the sweet Brandon. But the old Brandon would have slept at least two hours of the ride and the new Brandon told stories (about the Beatles) the entire time.
A little more Brandon news. Brandon and his network of friends (including me) are in the process of looking for the perfect person to co-parent with Brandon next school year. As we move to the next phase of transition, I have realized that our current living situation is the perfect opportunity to prepare Brandon for living independently. Brandon and his network have developed a plan for Brandon's future and part of that plan is for Brandon to live independently with a roommate. So after Brandon completes this school year, we will move back to Dripping Springs temporarily. Then in August, Brandon will move back into the condo with a co-parent/roommate for the next school year. Brandon will come to Dripping Springs each weekend, holidays, etc.... but otherwise he will be in school or here at the condo working on being as independent as possible. The network is looking for that right person to be a good co-parent and move in at the condo. Let us know if you know of anyone you could recommend us to consider.
A little about me - I have lost 17 pounds, gained back about 5 and on the road to losing 20 more. It has been hard, but all I have is time and motivation. I am going to spend the rest of April focused on the next 10. I am not traveling the rest of the month and trying to be as active as possible. Thanks for those of you who have sent your encouragement.
On to the new Brandon and 10 more less pounds.
More later
Leah
Wednesday, March 14, 2012
A Healthy Me and You
I haven't posted in a while. I have been traveling for work and Brandon and I have alternated colds and the stomach bug for the last two months. I have also had a few "respite weekends" tied to some of my travel. So a little update.
A little me - Well I feel like I have some success on my new healthy living. I have lost 17 pounds and am finally back in my wardrobe. But I feel like I need to get to a healthy weight for me and for my diabetes so I am aiming for another 20 pounds. I am walking everyday that I am in Austin on the trails for about 3 miles a walk. Really feeling great and holding off the high blood pressure for now. Its all good. Just need to stay focused on healthy eating and regular exercise.
A bunch you (Brandon) - As you may have read in the last two years, Brandon has had a rough time with seizure control. There are many factors on why his seizures have been worse in the last 2 years. Loss of significant weight after being hospitalized for H1N1 and having his medication levels off, insult to Brandon's system from the stress of H1N1, puberty kicking in, being on the same medication for 15 years and wisdom teeth coming in. But no one really knows why Brandon's seizures have been uncontrolled.
I have many friends of kids who have seizures experiencing the same thing at this age. As I was reminded this week, it has been a miracle that Brandon had his seizures under control for 17 years. But it finally came to a head this weekend when Brandon really could not wake up after 48 hours. He was just being controlled by the seizures.
Brandon has been on tegretol medication for 15 years. When Brandon started on the medication at age 2, Brandon really had his seizures under control. The only time they were not under control, was if he became sick or if he had a growth spurt. When he did have seizures they were very hard to detect. But it all changed after Brandon had H1N1. He began having fairly significant seizures shortly after discharge. We began raising the tegretol level month after month until finally we reached the top of the recommended therapeutic level. The neurologist then started him on Keppra on top of the high tegretol dose. Within a few days of starting Keppra, Brandon was like a new kid. We was interactive, talkative, happy, joking and engaged. I didn't realize what a toll tegretol was taking on him. It really has some serious side effects. I have wanted to remove tegretol since we added Keppra. There is currently a clinical trial studying the effects of Keppra on kids. Many parents have reported that their kids have "awakened" on Keppra and it is being studied. So needless to say, I love Keppra. But it has never completely stopped Brandon's seizures. Plus, Brandon is still on a very high does of tegretol while trying to get Brandon seizure free on Keppra. The only way to fast track change of his medications is to be in he hospital while being monitored.
Other things that have changed since H1N1 - Brandon now has triggers for seizures. He never had them before. For him, lack of sleep, bright lights, strong laughing and stress can set off a seizure. Brandon has been very careful to try and avoid the list. Brandon's seizures have become much more controlled since on Keppra, but he still has them. When he has them, they can be very strong and result in Brandon sleeping for hours afterwards. This weekend Brandon said he had a bad seizure Saturday night. I had a hard time waking him up Sunday morning. He finally got up for a few minutes but went right back to bed. He had another seizure Sunday morning. He finally woke up around 2 pm Sunday. We went to a store and Brandon had a bad seizure in the store. We left and came home. Brandon went to sleep. He woke up screaming in the middle of the night Sunday night (after a seizure) and then slept with me. Brandon had little seizures through the night and then had another one in the morning (Monday). He was still asleep when I left for a meeting. While I was gone Ross said he screamed again (another seizure). When I got back around 1:30 he was still asleep, could not walk without help and hard to wake up. I had been talking to the neurologist through the weekend and Monday morning and we all agreed he needed to go to the hospital to get checked. Brandon did not wake up until he had a dose of Depokene in the ER. At 6:00 PM he opened his eyes and was awake and talking. Dell ER ran a ton if tests and all tests led to Brandon just have seizures without any illness. Although Brandon was awake, the neurologists wanted him admitted to monitor his activity on the new medication and discuss the plan to keep him healthy.
The Plan - Begin weaning Brandon off tegretol with the goal of him totally off in 4 weeks. Begin Depokene, but increasing as we decrease tegretol (apparently they don't work well together). The end result is a therapeutic level in 4 weeks. Keep Brandon on a slightly higher level of Keppra. After Brandon's blood levels are checked in 4 weeks, set Brandon up for a 3 day stay in the Comprehensive Epilepsy Program at Dell.
http://www.dellchildrens.net/about_us/news/2011/08/02/setons_epilepsy_programs_for_children_and_adults_are_tops_in_the_region
Brandon will stay for three days in the Comprehensive Epilepsy Program while they take him off all medications. They will have him on an EEG for three days to determine the source of the seizures and decide what the best treatment is for his condition. I am hoping that after all this, Brandon will be back to rarely having a seizure and having his seizure activity under control.
For Brandon's future, having more control of his seizures will help him with employment. In addition, we are looking at having someone live with Brandon next year. So the more stable his condition the better. It is essential.
Last night Brandon was seizure free, happy, strong and looking better than I have seen him in a while. So so far so good.
Thanks to all you mom's the last two days pointing me to the Comprehensive Epilepsy Program. Once again, Parent to Parent connections work. And thanks Ross and Kate for taking care of the house, running errands and going to get Ringo (who I forgot about when we left). Thanks to Tom and Tony for company and some great food while we were waiting.
On to being healthy.
Leah
A little me - Well I feel like I have some success on my new healthy living. I have lost 17 pounds and am finally back in my wardrobe. But I feel like I need to get to a healthy weight for me and for my diabetes so I am aiming for another 20 pounds. I am walking everyday that I am in Austin on the trails for about 3 miles a walk. Really feeling great and holding off the high blood pressure for now. Its all good. Just need to stay focused on healthy eating and regular exercise.
A bunch you (Brandon) - As you may have read in the last two years, Brandon has had a rough time with seizure control. There are many factors on why his seizures have been worse in the last 2 years. Loss of significant weight after being hospitalized for H1N1 and having his medication levels off, insult to Brandon's system from the stress of H1N1, puberty kicking in, being on the same medication for 15 years and wisdom teeth coming in. But no one really knows why Brandon's seizures have been uncontrolled.
I have many friends of kids who have seizures experiencing the same thing at this age. As I was reminded this week, it has been a miracle that Brandon had his seizures under control for 17 years. But it finally came to a head this weekend when Brandon really could not wake up after 48 hours. He was just being controlled by the seizures.
Brandon has been on tegretol medication for 15 years. When Brandon started on the medication at age 2, Brandon really had his seizures under control. The only time they were not under control, was if he became sick or if he had a growth spurt. When he did have seizures they were very hard to detect. But it all changed after Brandon had H1N1. He began having fairly significant seizures shortly after discharge. We began raising the tegretol level month after month until finally we reached the top of the recommended therapeutic level. The neurologist then started him on Keppra on top of the high tegretol dose. Within a few days of starting Keppra, Brandon was like a new kid. We was interactive, talkative, happy, joking and engaged. I didn't realize what a toll tegretol was taking on him. It really has some serious side effects. I have wanted to remove tegretol since we added Keppra. There is currently a clinical trial studying the effects of Keppra on kids. Many parents have reported that their kids have "awakened" on Keppra and it is being studied. So needless to say, I love Keppra. But it has never completely stopped Brandon's seizures. Plus, Brandon is still on a very high does of tegretol while trying to get Brandon seizure free on Keppra. The only way to fast track change of his medications is to be in he hospital while being monitored.
Other things that have changed since H1N1 - Brandon now has triggers for seizures. He never had them before. For him, lack of sleep, bright lights, strong laughing and stress can set off a seizure. Brandon has been very careful to try and avoid the list. Brandon's seizures have become much more controlled since on Keppra, but he still has them. When he has them, they can be very strong and result in Brandon sleeping for hours afterwards. This weekend Brandon said he had a bad seizure Saturday night. I had a hard time waking him up Sunday morning. He finally got up for a few minutes but went right back to bed. He had another seizure Sunday morning. He finally woke up around 2 pm Sunday. We went to a store and Brandon had a bad seizure in the store. We left and came home. Brandon went to sleep. He woke up screaming in the middle of the night Sunday night (after a seizure) and then slept with me. Brandon had little seizures through the night and then had another one in the morning (Monday). He was still asleep when I left for a meeting. While I was gone Ross said he screamed again (another seizure). When I got back around 1:30 he was still asleep, could not walk without help and hard to wake up. I had been talking to the neurologist through the weekend and Monday morning and we all agreed he needed to go to the hospital to get checked. Brandon did not wake up until he had a dose of Depokene in the ER. At 6:00 PM he opened his eyes and was awake and talking. Dell ER ran a ton if tests and all tests led to Brandon just have seizures without any illness. Although Brandon was awake, the neurologists wanted him admitted to monitor his activity on the new medication and discuss the plan to keep him healthy.
The Plan - Begin weaning Brandon off tegretol with the goal of him totally off in 4 weeks. Begin Depokene, but increasing as we decrease tegretol (apparently they don't work well together). The end result is a therapeutic level in 4 weeks. Keep Brandon on a slightly higher level of Keppra. After Brandon's blood levels are checked in 4 weeks, set Brandon up for a 3 day stay in the Comprehensive Epilepsy Program at Dell.
http://www.dellchildrens.net/about_us/news/2011/08/02/setons_epilepsy_programs_for_children_and_adults_are_tops_in_the_region
Brandon will stay for three days in the Comprehensive Epilepsy Program while they take him off all medications. They will have him on an EEG for three days to determine the source of the seizures and decide what the best treatment is for his condition. I am hoping that after all this, Brandon will be back to rarely having a seizure and having his seizure activity under control.
For Brandon's future, having more control of his seizures will help him with employment. In addition, we are looking at having someone live with Brandon next year. So the more stable his condition the better. It is essential.
Last night Brandon was seizure free, happy, strong and looking better than I have seen him in a while. So so far so good.
Thanks to all you mom's the last two days pointing me to the Comprehensive Epilepsy Program. Once again, Parent to Parent connections work. And thanks Ross and Kate for taking care of the house, running errands and going to get Ringo (who I forgot about when we left). Thanks to Tom and Tony for company and some great food while we were waiting.
On to being healthy.
Leah
Friday, January 13, 2012
A New Year, A New Challenge
I don't like to talk too much about myself on this blog, because I want to focus on Brandon's journey. But this is also about family, friends, school and health care professionals during Brandon's journey and that includes me. Many of you may relate to this blog today.
My mother and my grandmother both had/have diabetes. They both were diagnosed with full blown diabetes around age 48. My mother is now 90 and my grandmother lived until 92. They managed to control their diabetes. They both did this through diet. My father died of a heart attack at age 69, but both of his sisters are still living and they are 90 and 92. Over the years working with families of kids with special needs I have seen that the stress on their bodies sometimes results in health issues at an earlier age than expected. I won't go into all the diagnosis because there is no one certain condition, just an awareness that stress really does take a toll on your health unless you really take care of yourself as well as you take care of your child. Before Brandon was born I had a diagnosis of pre-diabetes. I didn't really pay much attention to the diagnosis. Then Brandon was born. I had little sleep for many years; many new illnesses to understand, absorb and let go; bad food choices because it was difficult to get to the store; no exercise because I couldn't leave Brandon alone; and I ignored going to the doctor because Brandon was always at the doctor. I don't think I am the exception, but I don't want to use that as an excuse.
When I turned 48, I had a health scare that made me wake up and find a good endocrinologist. Sure enough my night sweats for several years, my constantly being tired, my never ending need for water was a sure sign of full blown diabetes. Not surprising with my family history, but if I had taken better care of myself maybe I could have slowed the onset. I managed to lose weight, eat healthier and get my diabetes under control right before Brandon's second foot surgery and then Brandon's H1N1. But once again the stress of no sleep, being in the hospital, no access to healthy food, no time for exercise and no ability to run over to the grocery store lead to me gaining weight again and not having my diabetes under control. The cycle never stopped.
Before Christmas I met with my endocrinologist and I realized that now I am developing high blood pressure as a result of the weight. I just cant go there. So I have no excuse. I have to get my health back in check and I need to build healthy eating, exercise, and taking care of myself into my schedule. So for the new year I have a new challenge. But this year the challenge is about me and my desire to be healthy and to hope that means I will be here longer for Brandon. So any of you up for a walk on the trail or ready for a healthy meal, I am in.
A little Brandon update. Brandon is back at school after Christmas. He has started having more seizures again. I am going to take him to a seizure specialist here in Austin to see if we can get these better under control. In the meantime I have scheduled Brandon for a dental cleaning. I know why am I talking about that. For Brandon a dental cleaning means out-patient hospitalization under general anesthesia. So next Friday he will have the outpatient procedure at Dell Children's. We have to go to Dell due to the seizures. I am also going to a meeting at Dell Children's to talk about a new pilot they are seeking to become the medical home for kids like Brandon through Specially for Children. This is an interesting concept that I should consider. I will let you know more about this later.
But for now a New Year and a New Healthier Leah and Brandon.
More later.
Leah
My mother and my grandmother both had/have diabetes. They both were diagnosed with full blown diabetes around age 48. My mother is now 90 and my grandmother lived until 92. They managed to control their diabetes. They both did this through diet. My father died of a heart attack at age 69, but both of his sisters are still living and they are 90 and 92. Over the years working with families of kids with special needs I have seen that the stress on their bodies sometimes results in health issues at an earlier age than expected. I won't go into all the diagnosis because there is no one certain condition, just an awareness that stress really does take a toll on your health unless you really take care of yourself as well as you take care of your child. Before Brandon was born I had a diagnosis of pre-diabetes. I didn't really pay much attention to the diagnosis. Then Brandon was born. I had little sleep for many years; many new illnesses to understand, absorb and let go; bad food choices because it was difficult to get to the store; no exercise because I couldn't leave Brandon alone; and I ignored going to the doctor because Brandon was always at the doctor. I don't think I am the exception, but I don't want to use that as an excuse.
When I turned 48, I had a health scare that made me wake up and find a good endocrinologist. Sure enough my night sweats for several years, my constantly being tired, my never ending need for water was a sure sign of full blown diabetes. Not surprising with my family history, but if I had taken better care of myself maybe I could have slowed the onset. I managed to lose weight, eat healthier and get my diabetes under control right before Brandon's second foot surgery and then Brandon's H1N1. But once again the stress of no sleep, being in the hospital, no access to healthy food, no time for exercise and no ability to run over to the grocery store lead to me gaining weight again and not having my diabetes under control. The cycle never stopped.
Before Christmas I met with my endocrinologist and I realized that now I am developing high blood pressure as a result of the weight. I just cant go there. So I have no excuse. I have to get my health back in check and I need to build healthy eating, exercise, and taking care of myself into my schedule. So for the new year I have a new challenge. But this year the challenge is about me and my desire to be healthy and to hope that means I will be here longer for Brandon. So any of you up for a walk on the trail or ready for a healthy meal, I am in.
A little Brandon update. Brandon is back at school after Christmas. He has started having more seizures again. I am going to take him to a seizure specialist here in Austin to see if we can get these better under control. In the meantime I have scheduled Brandon for a dental cleaning. I know why am I talking about that. For Brandon a dental cleaning means out-patient hospitalization under general anesthesia. So next Friday he will have the outpatient procedure at Dell Children's. We have to go to Dell due to the seizures. I am also going to a meeting at Dell Children's to talk about a new pilot they are seeking to become the medical home for kids like Brandon through Specially for Children. This is an interesting concept that I should consider. I will let you know more about this later.
But for now a New Year and a New Healthier Leah and Brandon.
More later.
Leah
Saturday, December 24, 2011
Waiting for Santa One More Year
At this time of year it always reminds me of Brandon's innocence, his ability to dream, and his sweetness. Because at this time each year for 19 years I scramble to be Santa just one more year. Every year I delicately question Brandon about whether he believes in Santa or if he believes Santa will arrive on Christmas eve. We track Santa's progress and Brandon loyally goes to bed early to make sure Santa will arrive. I think in some ways Brandon might think there is no Santa, but there is enough of a belief that Santa is still possible that he hangs in each year. So we continue each year. It doesn't matter where we are each Christmas, Brandon still believes Santa has arrived. It is one of the things I love most about Brandon. He does still believe all things are possible and he still has that innocence. Brandon has grown up in many ways of the years. He is definitely a teenager. Loves his own space and loves his own time. But today I am reminded he is still is a kid at heart.
We started the day off a little rough. Brandon and I woke up early and headed to our annual ritual at Central Market to pick up the Holiday dinner. Now that my mom is 90 and my Aunt is 90, the ceremonial cooking falls on me and my two brothers. Really, only one of us slightly cooks and that one is not me. I don't think that gene was passed on to the next generation of Rummel's from my mother. But the great thing is there are so many options now for us "non-cooks" that the cooking part of Christmas is not too unbearable. We stood in a short line for our Holiday meal when Brandon started to have a fairly major seizure. Really no one noticed but us. With this kind of seizure Brandon normally drops to the ground. I held on to him as he had the seizure and as he tried to recover while Central Market staff was loading up the cart. We saw one of the managers who know both of us from Texas Parent to Parent fundraisers and she came over as Brandon was about to recover. Needless to say we were out of there fairly quick after our conversation. Brandon has fully recovered and now is anxiously awaiting the arrival of Santa.
So tonight one more year I will be Santa and one more year Brandon will believe. Maybe it is a lesson for all of us this Christmas to treasure all those around you and you are never to old to stop believing. Merry Christmas Everyone.
Leah
We started the day off a little rough. Brandon and I woke up early and headed to our annual ritual at Central Market to pick up the Holiday dinner. Now that my mom is 90 and my Aunt is 90, the ceremonial cooking falls on me and my two brothers. Really, only one of us slightly cooks and that one is not me. I don't think that gene was passed on to the next generation of Rummel's from my mother. But the great thing is there are so many options now for us "non-cooks" that the cooking part of Christmas is not too unbearable. We stood in a short line for our Holiday meal when Brandon started to have a fairly major seizure. Really no one noticed but us. With this kind of seizure Brandon normally drops to the ground. I held on to him as he had the seizure and as he tried to recover while Central Market staff was loading up the cart. We saw one of the managers who know both of us from Texas Parent to Parent fundraisers and she came over as Brandon was about to recover. Needless to say we were out of there fairly quick after our conversation. Brandon has fully recovered and now is anxiously awaiting the arrival of Santa.
So tonight one more year I will be Santa and one more year Brandon will believe. Maybe it is a lesson for all of us this Christmas to treasure all those around you and you are never to old to stop believing. Merry Christmas Everyone.
Leah
Thursday, December 22, 2011
The Value of Work
Several friends I have seen in the last few months have been asking about Brandon's jobs and how work is going for Brandon. I wanted to give the topic justice and spend a little time on the update. But I also want to be careful with Brandon's privacy and safety.
During the summer I contacted a major hospital system in Austin that frequently works with kids with special needs to learn job skills. The branch I chose was not currently participating in the program. I discussed Brandon's desire to work and his skills with an executive at the hospital and she asked managers of different sections that showed interest if they had any volunteer opportunities. We found a match in medical records. We decided that with the start of the new Adult Transition Program, Brandon and a job coach through the new school program would work on filing medical records two times a week. I am adding pictures here to show what Brandon is doing. This is a volunteer job, a training opportunity with the school and great experience for Brandon. But it is not the "Beatles". It may lead to a good long term employer match.
Through Brandon's life, Brandon has always had to learn how to do the most basic things. Small things you and I take for granted everyday have been major victories for Brandon after years of learning. Swallowing, reading, talking, using his communication device, walking, the list goes on. Brandon does not give up and there is always a major celebration when he makes progress. So I expect learning how to work will be a work in progress just like learning to walk. All those successes along the way will be and have been inspiring.
I don't often insert my soap box in the blog. But I have to on this topic. Brandon wants to live in a home just like you and I live in a home. One he can call his own, whether it is an apartment, whether it is with a roommate or whether it is in a house. Brandon doesn't want to sit home alone or with an aide all day long not doing anything or even on the computer all day long. He wants to be with people, he wants to be valued. I have friends who have kids who also want this as their dream. But they just need the opportunity. I met a young man last year in his 20's. He had a job working in a garage. He loved that job. But the garage closed. He was not able to find another job and his grandmother was unable to care for him as a result. Today, he is in the state school. He is a wonderful young man, but the system failed him. It really breaks my heart for him and what I know he can be. That he is valued, living independently and living his own dream. I don't want to ever judge other people's choices, but this young man said he wants to work, he misses his job and he doesn't want to live in the State school. So please everyone - please keep an open mind as an employer and give a person with disabilities the opportunity to be valued and the gift of a wonderful and loyal employee for yourself. There are many more adults with disabilities who just want that choice. I do want to add success stories to this blog in the future. I would love to add yours.
More later.
Leah
Working with Brandon to find that great job match for him and his employer is something that I really love doing and I know it is really important for his future. I know for Brandon, his job will be more than just a job. For him it will be training to learn what it means to work. It will be learning to interact with people like he has not interacted with before. It will challenge his communication skills with every word he wants to speak, type or sign. I know that he may find friends through his work. I know that he will be proud of himself when he is valued for his work. It also is key to Brandon's dream of living independently and success for his transition. Therefore, job training and job placement is really important for Brandon and for his success. I don't want him to have an awful experience and then he may never want to try again. But, I also want him to be valued for the work he is capable of doing. Really, the main motivator for Brandon is music and even better the "Beatles". I haven't thought of the perfect "Beatles" job yet, but I have not given up brainstorming on this. In the meantime, Brandon has had many volunteer jobs and his one paid job with Goodwill. He worked at a library, the AG's office, the pet store (he didn't like the smell), his own shredding business, the food bank (he really liked this), a fitness center, a tanning salon and delivering mail at school.
Prior to graduation, Brandon's network came together several times to brainstorm about jobs. We determined that Brandon loves music, likes working inside, loves being around people and working in groups, likes to sort and of course loves music and the Beatles. The group focused in on some volunteer jobs that may expand those skills in hopes that Brandon may someday have a paying job that he likes. We tried to contact a local small radio station (filing and music), a assistant living home (socialization), movie theater, book store, a church (paperwork) and a local library. Finally success. Brandon was selected to volunteer at a local library. They were a little hesitant at first, but I explained that his aide would be coming with him and we would be open for input for improvement. The job was a little challenging for Brandon because he was having major health problems last summer as a result of seizures. When he was feeling good he shelved books. He would work great for about 30 minutes, but tire by the time the hour was over. However, he really liked the job, being around people and learning how to work. Brandon thanked the Library for his volunteer job during the summer and the staff said they would love to have him back next summer. Our goal after this job was to build stamina for Brandon and work towards him performing the job independently.
 |
| Brandon selecting the medical record |
 |
| Brandon identifying the number for filing |
Brandon also works two days a week for a small company through the Adult Transition Program. The small company does work with the legislature. The company has endless paperwork. Brandon is going through old bills and sorting them into piles. He likes the job, but he really likes the people interaction. For his birthday we went to Waterloo Records for a CD. I asked him after we returned if he had a choice between working at Waterloo Records or this small company, which would he chose. Hands down he likes the small company. Knowing that Waterloo has the "Beatles", that means he really loves working at this small company. And we all know it is because the staff really interacts with him and really like him. That makes all the difference in the world. He is valued. I think everyone wants that in a job and in life. |
| Brandon finding the correlating number/letter in the file. |
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| Brandon putting the record in the file |
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| Brandon reading through papers |
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| Brandon sorting papers. |
I don't often insert my soap box in the blog. But I have to on this topic. Brandon wants to live in a home just like you and I live in a home. One he can call his own, whether it is an apartment, whether it is with a roommate or whether it is in a house. Brandon doesn't want to sit home alone or with an aide all day long not doing anything or even on the computer all day long. He wants to be with people, he wants to be valued. I have friends who have kids who also want this as their dream. But they just need the opportunity. I met a young man last year in his 20's. He had a job working in a garage. He loved that job. But the garage closed. He was not able to find another job and his grandmother was unable to care for him as a result. Today, he is in the state school. He is a wonderful young man, but the system failed him. It really breaks my heart for him and what I know he can be. That he is valued, living independently and living his own dream. I don't want to ever judge other people's choices, but this young man said he wants to work, he misses his job and he doesn't want to live in the State school. So please everyone - please keep an open mind as an employer and give a person with disabilities the opportunity to be valued and the gift of a wonderful and loyal employee for yourself. There are many more adults with disabilities who just want that choice. I do want to add success stories to this blog in the future. I would love to add yours.
More later.
Leah
Monday, November 28, 2011
Transition Update
I have been working with Brandon's network on a plan for Brandon to transition to a more independent living situation next school year. Essentially, Brandon would live here at the condo in Austin with someone he knows and trusts during the school days and on the weekends he will live with me in Dripping Springs. We have worked up a plan on how to take baby steps so that the transition is not so foreign to Brandon. Through Brandon's plan of care, I have worked in respite weekends throughout this school year where I am not in the condo and Brandon stays in the condo with one of his aides. The aides take Brandon to social activities, work with him on independence activities and let Brandon have some Brandon time as well. We are all hoping that this will help Brandon prepare for longer periods without me being at the condo.
We just completed the third respite weekend and in two weeks will be the 4th. This last respite weekend also came after four days of work travel for me. Amazingly, this is the first work travel that Brandon did not have a medical emergency. Last month I went to Houston for a a two day work meeting and at the end of the second day I received a call that Brandon had a seizure and was complaining that he could not breath. I ended up talking to EMS as they assessed Brandon and I had to convince them not to transport Brandon to the hospital. Pretty frustrating when you are not in the same city. It all worked out well and I ended up leaving early to come back to Austin. I usually try to drive just for this reason. So after four days of work travel and a respite weekend there was a little light at the end of the tunnel. When I returned back to the condo, Brandon gave me a hug but then closed his door to be back in his teenager mode. Not too impacted by a week away from mom. Brandon later told me that he missed me a little, but loved hanging with the guys and I am okay with that. This transition plan is working very well for Brandon, but I have found it is a major adjustment for me. I believe we are both transitioning. I still find it hard to not be in Brandon mode and to have a little bit of independence to do anything I want to do without him. I don't really know what to do with myself. And - I will always be glued to the cell phone just in case of that real emergency.
In the meantime, Brandon is in full Christmas mode. I hate to admit it, but he has been listening to Christmas music since July. He has all his favorite Christmas music on his IPOD. I am too lazy to remove them after each Christmas, so I run the risk of Christmas music when is it 107 outside. Sometime around October he really starts listening to it, especially Bing Crosby. His favorite - "White Christmas". He is truly in heaven when the radio station at 95.5 begins their non-stop Christmas music. Brandon loves Christmas.
Brandon is also preparing for his birthday. He thinks he is sneaky and will ask me what he is getting for his birthday. I haven't given away the surprise yet. He will be 19 on Dec. 9th. I can't believe it, but glad it is almost here.
On to respite weekend 4 with pottery classes and parties. Need to plan things to do on those respite weekends. More later.
Leah
We just completed the third respite weekend and in two weeks will be the 4th. This last respite weekend also came after four days of work travel for me. Amazingly, this is the first work travel that Brandon did not have a medical emergency. Last month I went to Houston for a a two day work meeting and at the end of the second day I received a call that Brandon had a seizure and was complaining that he could not breath. I ended up talking to EMS as they assessed Brandon and I had to convince them not to transport Brandon to the hospital. Pretty frustrating when you are not in the same city. It all worked out well and I ended up leaving early to come back to Austin. I usually try to drive just for this reason. So after four days of work travel and a respite weekend there was a little light at the end of the tunnel. When I returned back to the condo, Brandon gave me a hug but then closed his door to be back in his teenager mode. Not too impacted by a week away from mom. Brandon later told me that he missed me a little, but loved hanging with the guys and I am okay with that. This transition plan is working very well for Brandon, but I have found it is a major adjustment for me. I believe we are both transitioning. I still find it hard to not be in Brandon mode and to have a little bit of independence to do anything I want to do without him. I don't really know what to do with myself. And - I will always be glued to the cell phone just in case of that real emergency.
In the meantime, Brandon is in full Christmas mode. I hate to admit it, but he has been listening to Christmas music since July. He has all his favorite Christmas music on his IPOD. I am too lazy to remove them after each Christmas, so I run the risk of Christmas music when is it 107 outside. Sometime around October he really starts listening to it, especially Bing Crosby. His favorite - "White Christmas". He is truly in heaven when the radio station at 95.5 begins their non-stop Christmas music. Brandon loves Christmas.
Brandon is also preparing for his birthday. He thinks he is sneaky and will ask me what he is getting for his birthday. I haven't given away the surprise yet. He will be 19 on Dec. 9th. I can't believe it, but glad it is almost here.
On to respite weekend 4 with pottery classes and parties. Need to plan things to do on those respite weekends. More later.
Leah
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