Well it has been a while since my last post. Brandon and I are sharing an aircard for internet access. I have it during the day for work and Brandon uses it at night and the weekends. I had to barter for this little time tonight. But that is all for another blog post about kids in the age of he internet. I think of this as the "Beatles" period of our lives where we pretend like it is 1964 and when the Beatles did not have the internet. That seems to be working. In the next two months we will be connected to Roadrunner and we will all be happy.
But back to the topic of the night. Brandon, his network of friends and I have been working on Brandon's transition from high school to an adult. I will give you all an update on our first network meeting we held last month on a new post. But one of Brandon's network members suggested that I have Brandon assessed through DARS vision department for services. I looked up the services online and found that there is a great transition program. So I made an appointment for Brandon, brought him and all of his paperwork on his vision issues and met with DARS last week. The case worker was very nice but it quickly became apparent that once again Brandon's diagnosis of cortical visual impairment does not fall easily under the standard definition of "blind". Brandon must meet several of he requirements to be considered "blind enough" to be considered for services.
This is been a little bit of a sensitive subject with me and for Brandon for 17 years. From birth I have been having all kinds of professionals working with Brandon tell me that Brandon appears to have a visual impairment. I always listen, ask where should I take him to get assessed and they usually suggested an opthamologist. Brandon has been to a least 5 opthamologists al over the state in his 17 years. They all say he has strambismus, good acuity (can read liner notes on all those CDS and DVDs) and that structurally there is nothing wrong with his eyes. So for 12 years I really believed that Brandon had no vision issues and that all those professionals were wrong.
Just a little history, when Brandon was younger were went back and forth to the Texas Children's hospital to visit their feeding program. I always felt sorry for dragging him on such a long trip and thought it would be fun to go to the zoo before each visit. I would take him to the zoo and show him all the animals and Brandon would stare at the sky. He was happy but by the time we left each time I was frustrated that he refused to acknowledge the animals. Of course I thought I was taking him because he wanted to go.
A little more history. Brandon has broken his foot 5 times and his wrist twice. They all happened when he did small things. The first one was at a friend's house. Brandon and I were on his deck which was about 2 inches off the ground. Brandon slid off the edge of the deck and started screaming. I had no idea he had just broken his foot and I could not believe he did not see the edge of the deck. The other incidents were very similar. Then there was the time at a friend's party when Brandon walked right into his swimming pool with his clothes on. He did not see the pool. At the time I was frustrated that he just walked into the pool with his clothes on, but later it all made sense.
After ending the lawsuit concerning placement with Brandon's school district years ago, I decided that I would homeschool Brandon for a few years. I hired a psychologist to do a complete assessment on Brandon to tell me his strengths, weakenesses, where he was in level for reading, math etc. The psychologist was highly recommended from the disability community. I took Brandon to see her for over 3 months. At the end of 3 months she called me and asked to meet. We went over all the tests she performed. She had determined that when information was presented to Brandon that was not visually challenging or when presented when Brandon was physically well Brandon did very well on the assessments. We went over her examples. But when information is presented in a visually challenging manner or when Brandon was tired or ill Brandon completely flunked the test. The assessments did not make sense unless Brandon was dealing with a significant visual impairment. So once again I had another professional refer me back for a vision assessment. But this time I went back to where I should have gone initally - to Texas Parent to Parent to talk to another parent having the same issues. Texas Parent to Parent referred me to a mom who also worked at the Blind School. I was blown away by what she recommended. She said Brandon needed to be assessed for low vision. She referred me to the best assessment team in Texas at the University of Houston. It took several months but Brandon was assessed and it turns out that he does have significant visual issues. Brandon cant see down (hence the broken feet). Brandon cannot see visually complex fields - like the animals at the zoo against all the other visual fields with the animals. Brandon is red/green colorblind. Brandon had significant strambismus and overall Brandon has cortical visual impairment. I added a link on cortical visual impairment. Brandon has these issues due to neurological impairements, not because of anything structurally wrong his his eyes (except strambismus).
The parent also referred me to a women who performs functional visual assessments to determine how CVI affects Brandon in daily life such as school and home. She came to our house. She placed colored balls in the kitchen for Brandon to find. Brandon was very excited because you could tell for the first time someone got him. So he was anxious to please. She asked Brandon to find the balls on the kitchen counter. There were several items on the counter with the balls but clearly in plain site for you and me. Brandon never found the balls. The visual field was too cluttered. We removed a few of the items on the counter and placed the balls again. Brandon looked for over 5 minutes and finally found the balls. The last test was placing the balls on the counter with nothing around them. Brandon found them quickly. That really explained the zoo.
For years I have been trying to get Brandon to use the cumputer as a means for communcation. But after this assessment I understood his frustration and mine. Brandon cannot look down at the keyboard and then back at the screen. That visual transition does not work for him. Number 1, he cannot see down and number 2, he lost his placement on the computer screen. It al made so much sense to me after both assessments. From that date forward we have adjusted his school work, I make sure there is nothing on the ground that Brandon may fall over and I work with Brandon with his careful, slow, methodical, safe daily movement through life. Brandon knows his limitations visually and is very cautious in his every movement.
After the diagnosis, I quickly became aware that CVI does not neatly fall within the established definition of "blindness" in Texas. I applied for services to work with him independently and was denied previously. The schools accept the diagnosis and work with him, but receiving other services has been difficult.
So here we are again trying to force a label into a set of significant visual issues. I have done it for 17 years, but it gets frustrating. I am sure for Brandon it is even more frustrating. I do know that Brandon can greatly benefit from the DARS vision transition services offered, but I am not sure I can convince DARS Brandon is "blind enough". Brandon and I are meeting with his opthmologist next week to once again utilize my lobbying skills to convince her Brandon is "blind enough" for services. UGHH. It is all about the label and not the kids.
More later.
Leah
Tuesday, March 23, 2010
Saturday, February 6, 2010
Its Hard Letting Go
Today was the beginning for Brandon starting his own life - a good life - becoming independent, working and making his own decisions. But as a mom it is hard to let go. However, I know it will lead to Brandon's good life. Brandon signed up for a job training program through the City of Austin and Goodwill to help kids, including kids with special needs, obtain job training and get paid for a part time job for 5 weeks in the summer. Brandon is so excited because he knows that he can buy a bunch of DVD's earning $7.25 an hour, 20 hours a week, for five weeks.
So this morning we went to Brandon's job training/job interview day with a large group of other kids also wanting job experience and training. Goodwill received a grant to help kids receive job training and they have partnered with many major employers in the Austin area. It is really a great program and a great opportuinity for Brandon.
Brandon and I had to separate when we got there and you could tell he was very nervous. Ms Rector, Brandon's teacher came and helped Brandon which was great. It put Brandon at ease, but also helped people understand him. Brandon's speech sometimes can be difficult to understand. I left Brandon there for 7 hours. I told Brandon this evening that he was very brave to stay all day, train, and be willing to try. He is proud of himself.
It would be easy for me to have Brandon stay at home with me for the rest of his life. But many years ago I met someone at work who had a sister with down's syndrome. His parents had her at home with them until they died. He said she was really unhappy, not prepared for life and was in shock when they died. He worked with his sister. Helped her find a job and helped her transition to living independently. He said he had never seen her so happy. To this day she has a very full life. He said to please remember this as Brandon got older because really his sister would have been happier transitioning when she was younger.
I have had other friends who are older, became sick, did not transition their kids and their kids were not prepared when they had to transition. It is tough for everyone.
I really had to think about this when we started preparing for development of Brandon's good life and his PATH to the future. Although it is really hard for me to let Brandon out in the world where not everyone is as sweet as Brandon, as nice as Brandon and as special (to me) as Brandon, it really is the only way to Brandon's good life. When we developed Brandon's PATH to his good life, Brandon said that he wants to live independently, marry someone named Yoko, and have a child. In order to meet his dream he will need to become independent just like Patrick became indepentent when he joined the Air Force. Brandon really looks up to his brother Patrick and wants to live like he does.
So in June Brandon will have his first job. I remember my first job at Burger Chef. It was pretty rough. I think they are still talking about the time I had the biggest over-riing in the history of Burger Chef and the time I flooded the entire place when it was my night to close down and clean up. The water turnoff was in the locked area of the place. The water spout broke and there was no way to turn off the water. Therefore, the whole place flooded. They are probably still talking about that as well.
I hope Brandon's experience is much better. This whole experience may be harder on me than him, but I am hanging in there knowing that one day Brandon will have his good life.
More updates later.
Leah
So this morning we went to Brandon's job training/job interview day with a large group of other kids also wanting job experience and training. Goodwill received a grant to help kids receive job training and they have partnered with many major employers in the Austin area. It is really a great program and a great opportuinity for Brandon.
Brandon and I had to separate when we got there and you could tell he was very nervous. Ms Rector, Brandon's teacher came and helped Brandon which was great. It put Brandon at ease, but also helped people understand him. Brandon's speech sometimes can be difficult to understand. I left Brandon there for 7 hours. I told Brandon this evening that he was very brave to stay all day, train, and be willing to try. He is proud of himself.
It would be easy for me to have Brandon stay at home with me for the rest of his life. But many years ago I met someone at work who had a sister with down's syndrome. His parents had her at home with them until they died. He said she was really unhappy, not prepared for life and was in shock when they died. He worked with his sister. Helped her find a job and helped her transition to living independently. He said he had never seen her so happy. To this day she has a very full life. He said to please remember this as Brandon got older because really his sister would have been happier transitioning when she was younger.
I have had other friends who are older, became sick, did not transition their kids and their kids were not prepared when they had to transition. It is tough for everyone.
I really had to think about this when we started preparing for development of Brandon's good life and his PATH to the future. Although it is really hard for me to let Brandon out in the world where not everyone is as sweet as Brandon, as nice as Brandon and as special (to me) as Brandon, it really is the only way to Brandon's good life. When we developed Brandon's PATH to his good life, Brandon said that he wants to live independently, marry someone named Yoko, and have a child. In order to meet his dream he will need to become independent just like Patrick became indepentent when he joined the Air Force. Brandon really looks up to his brother Patrick and wants to live like he does.
So in June Brandon will have his first job. I remember my first job at Burger Chef. It was pretty rough. I think they are still talking about the time I had the biggest over-riing in the history of Burger Chef and the time I flooded the entire place when it was my night to close down and clean up. The water turnoff was in the locked area of the place. The water spout broke and there was no way to turn off the water. Therefore, the whole place flooded. They are probably still talking about that as well.
I hope Brandon's experience is much better. This whole experience may be harder on me than him, but I am hanging in there knowing that one day Brandon will have his good life.
More updates later.
Leah
Tuesday, January 19, 2010
Brandon's Good Life Party Overview
Brandon held his "Good Life" party this weekend to plan for his future. Everyone really enjoyed the party and the process we used to develop Brandon "Good Life Path". Jennifer and Trish did a great job of facilitating and turning Brandon's dream of being the King of Rock n Roll and his love of the Beatles into a plan for the future. It was a lively, large group helping and coming up with great ideas to explore. We already have a possible Rock n Roll camp for Brandon to attend this summer, added e-mail addresses and phone numbers to Brandon's communcation device to call and e-mail friends and added skype for Brandon to communicate. Brandon independently cleaned up his room and took his dirty clothes to the laundry basket this weekend and Bill is ready for drum lessons for Brandon. A great start already.
I have written out Brandon's Good Life Path and sent to everyone at the meeting and who was interested in participating. Next steps is to form a smaller group to work through more of the Path and support Brandon for longer term.
I am also in the process of researching topics concerning guardianship, SSI and child support orders and looking for the right attorney to help with this for a reasonable fee. I am really behind on the guardianship topic and need to do a great deal of research.
Thanks so much for everyone's support and I will keep you posted as we work through Brandon's Good Life PATH.
Leah
I have written out Brandon's Good Life Path and sent to everyone at the meeting and who was interested in participating. Next steps is to form a smaller group to work through more of the Path and support Brandon for longer term.
I am also in the process of researching topics concerning guardianship, SSI and child support orders and looking for the right attorney to help with this for a reasonable fee. I am really behind on the guardianship topic and need to do a great deal of research.
Thanks so much for everyone's support and I will keep you posted as we work through Brandon's Good Life PATH.
Leah
Brandon's Good Life Party
The gang at Brandon's Good Life Party
Leah (mom), Jim, Cathy and Steve
Jennifer and Trish (facilitators)
Working with Brandon's love of the Beatles and his desire to be the King of Rock n Roll
Brandon's communication device
Wednesday, January 13, 2010
Brandon's Good Life
This weekend 26 of my and Brandon's closests friends and family will gather at his grandmother's house and brainstorm on developing a plan for Brandon's path to a good life from now and in the future. Brandon and I have discussed his plans for the future many times, but now we are close to reality because within the next year he will turn 18. For several years I have been very aware that I am the sole person knowing almost everything about Brandon. I know his likes and dislikes, his great sense of humor, his sweetness, his love of music especially the Beatles, his medical conditions, prior surgeries, dental issues, his communication challenges, funding programs that support and have supported Brandon, the many aides and nurses who have supported Brandon is the past and present and his individual needs for daily living, what he is doing in school, what classes he is taking and why, what supports are needed in school, what are his thoughts for the future, and much more. I have to say with all our supports and hard work Brandon is a great kid and has gone so far in 17 years.
I have concerns about being the only person with the knowledge of what it takes for Brandon to be the best he can be and to be happy. So during this transition to an adult, I have decided it is time to develop a plan for Brandon’s future and to have more people involved in those decisions and aware of Brandon’s plans for himself. I have been reading a book titled “A Good Life” by Al Etmanski. It is written by parents of kids/adults with special needs from Canada and it takes the years of experience from families who have developed plans for the future with their kids with special needs and those who formed a smaller support group to support those dreams throughout that child’s life.
The book identifies key areas for families to consider when developing a plan for the future. This is true for all parents.
· Having loving and caring relationships and friendships
· Having a place of one’s own or a home
· Making a contribution or having meaning in one’s life
· Directing your own life or having choices
· Having basic financial security.
These are all things to consider when developing a plan for the future which allows for a good life.
The ARC of Texas has a very similar process where they call the plan for the future a PATH or Planning Alternative Tomorrows with Hope. Once a PATH is developed a smaller group of individuals form together and help make that good life happen. This can lead to this group forming a non-profit microboard to support the PATH.
I have been working with the ARC of Texas to help facilitate a meeting to help develop Brandon’s Path or a plan for Brandon’s good life for now and the future. The goal is to brainstorm all the possiblities with a large group of friends and family and form a smaller group, meet on a regular basis and take those great ideaz and refine them into a working plan. The plan is fluid as Brandon grows and matures. But the idea is for the whole group to be involved and knowing Brandon's plan for the future. It is a great relief for family to have help and hopefully a joy for the people who volunteer their time. Everyone coming to the meeting all know Brandon, but all know him differently and each are key to brainstorming all the possibilities. We are honored to have such great friends and family help us through this process.
On my list for learning in the next few months include guardianship, Medicare and SSI application and implementation. I also need to update Brandon's trust. Lots to do and I know this all will pass by quickly.
What I learn, I will try to post for any parents starting this process. I really feel like I am starting late, but I also know that anytime you start to build the future with your child is a good time to start. Looking forward to seeing everyone on Saturday.
More later
Leah
I have concerns about being the only person with the knowledge of what it takes for Brandon to be the best he can be and to be happy. So during this transition to an adult, I have decided it is time to develop a plan for Brandon’s future and to have more people involved in those decisions and aware of Brandon’s plans for himself. I have been reading a book titled “A Good Life” by Al Etmanski. It is written by parents of kids/adults with special needs from Canada and it takes the years of experience from families who have developed plans for the future with their kids with special needs and those who formed a smaller support group to support those dreams throughout that child’s life.
The book identifies key areas for families to consider when developing a plan for the future. This is true for all parents.
· Having loving and caring relationships and friendships
· Having a place of one’s own or a home
· Making a contribution or having meaning in one’s life
· Directing your own life or having choices
· Having basic financial security.
These are all things to consider when developing a plan for the future which allows for a good life.
The ARC of Texas has a very similar process where they call the plan for the future a PATH or Planning Alternative Tomorrows with Hope. Once a PATH is developed a smaller group of individuals form together and help make that good life happen. This can lead to this group forming a non-profit microboard to support the PATH.
I have been working with the ARC of Texas to help facilitate a meeting to help develop Brandon’s Path or a plan for Brandon’s good life for now and the future. The goal is to brainstorm all the possiblities with a large group of friends and family and form a smaller group, meet on a regular basis and take those great ideaz and refine them into a working plan. The plan is fluid as Brandon grows and matures. But the idea is for the whole group to be involved and knowing Brandon's plan for the future. It is a great relief for family to have help and hopefully a joy for the people who volunteer their time. Everyone coming to the meeting all know Brandon, but all know him differently and each are key to brainstorming all the possibilities. We are honored to have such great friends and family help us through this process.
On my list for learning in the next few months include guardianship, Medicare and SSI application and implementation. I also need to update Brandon's trust. Lots to do and I know this all will pass by quickly.
What I learn, I will try to post for any parents starting this process. I really feel like I am starting late, but I also know that anytime you start to build the future with your child is a good time to start. Looking forward to seeing everyone on Saturday.
More later
Leah
Thursday, November 12, 2009
At last the end is near
Today Brandon and I went back to the Scottish Rite Hospital for a check on the second surgery Brandon had on his left foot. Brandon had some set-backs from this surgery because of the H1N1 illness at Dell Children's. Brandon's cast was removed and replaced several times. However, it didnt seem to have much of an impact. Today, Dr Birch and the Blue team gave Brandon the thumbs up on his left foot and have allowed Brandon to go brace free. They also said we will not have to go back to Scottish Rite for 6 months.
Brandon started clapping and hugged everyone in the room when he found out that he did not have to wear the brace anymore and I almost did the same when I heard we did not have to come back for 6 months. Way to go Brandon.
We will watch the right foot for now and hope it does not get worse. I dont think I could handle another hospital stay this year.
Also, on a total pamerping note, we stayed at the Warwick Hotel a few blocks from the hospital in Dallas. I love that place. We have stayed there several times over the last 2 1/2 years and everytime it has been fabulous. I can sometimes get a great rate on expedia. If you ever go to Dallas and want a little luxury, I totally recommend the Warwick or Hotel ZaZa. Brandon and I have stayed in almost ever hotel downtown and they are the best. Last night they took us to the new Hard Rock Cafe where they are having a John Lennon fundraiser (hunger) and Brandon was in heaven. I was just in heaven in the hotel. It was a nice way to spend the last two days full of doctor visits. It makes it that much more bearable.
The day before Brandon had a clinical trial visit at Dell Children's. The appointment was over two hours and I forgot my purse. So we had to drive back very south and then turnaround and head for Dallas. That landed us in rush hour traffic. But pulling up to the hotel made it all better. And finding out the next visit is in 6 months is even better.
Now back to Brandon's transition. More later.
Leah
Brandon started clapping and hugged everyone in the room when he found out that he did not have to wear the brace anymore and I almost did the same when I heard we did not have to come back for 6 months. Way to go Brandon.
We will watch the right foot for now and hope it does not get worse. I dont think I could handle another hospital stay this year.
Also, on a total pamerping note, we stayed at the Warwick Hotel a few blocks from the hospital in Dallas. I love that place. We have stayed there several times over the last 2 1/2 years and everytime it has been fabulous. I can sometimes get a great rate on expedia. If you ever go to Dallas and want a little luxury, I totally recommend the Warwick or Hotel ZaZa. Brandon and I have stayed in almost ever hotel downtown and they are the best. Last night they took us to the new Hard Rock Cafe where they are having a John Lennon fundraiser (hunger) and Brandon was in heaven. I was just in heaven in the hotel. It was a nice way to spend the last two days full of doctor visits. It makes it that much more bearable.
The day before Brandon had a clinical trial visit at Dell Children's. The appointment was over two hours and I forgot my purse. So we had to drive back very south and then turnaround and head for Dallas. That landed us in rush hour traffic. But pulling up to the hotel made it all better. And finding out the next visit is in 6 months is even better.
Now back to Brandon's transition. More later.
Leah
Monday, November 2, 2009
A New Focus
Every year for many many years I try to determine what Brandon really needs to be successful for that year. Because in the big picture a parent could spend every day and night trying all the therapies, educational methods, wellness and health recommendations and still there would not be enough hours in the day. In the beginning when Brandon was born, I tried to do everything. Feeding, talking, therapies (speech, occupational, physical, swimming, massage, etc.)sign, new health and wellness recommendations. We were all exhausted, especially Brandon. I finally decided that yes many things are important, but what was really important that year? I would concentrate on that topic for one year and move to another the following.
Over the years it has been home-schooling, trying to get Brandon to eat, trying to get Brandon to walk, trying to help Brandon communicate, the list goes on. Last two years were the years of trying to find Brandon's true diagnosis and trying to correct some of his health conditions especially his feet. I know they are sound overwhelming.
But for me this year will be the most overwhelming year of them all. In December Brandon will turn 17 and we will be one year away from becoming an adult. For a child with special needs that is very significant. He will be able to make his own decisions about his health, money, school etc. that I am not sure he can really comprehend. We will need to decide about guardianship. I will need to deal with his child support. We will need to decide if we will apply for SSI assistance for him to become more self sustained as an adult. We will need to decide if we will apply for Medicare. Brandon will have 3 more years after 18 in the school system and then his assistance will be limited. We will need to decide what he wants to do as an adult, where he will live, who will be a part of helping with these decisions and what will happen if something happens to me. These are all really hard decisions. They are complicated decisions and they require a great deal of research before Brandon reaches 18.
So this next year I will began to blog about Brandon's transition to adulthood and what we learn along the way. I am interested in setting up a Board to work through this with me and to begin support of these decisions in a group. So I will research the best way to set this up. I will go over Brandon's special needs trust and changes that will be made and I will learn and report on what is needed to apply for SSI, guardianship and Medicare. Also, I was prewarned that when Brandon turns 18 he will lose Medicaid and I will have to go through a process to restore his benefits. So I will report what I learn about this as well. Brandon is currently in the CLASS waiver program.
So I am about to start the walk through the journey of change with Brandon. Feel free to walk with me and Brandon and hopefully learn as we go through this journey.
Next week Brandon and I travel back to Dallas to hopefully have the doctor's check his current brace. It is working well, but I think he may be ready to walk without the brace or possibly a flexible brace. He is doing great since returning to school. I am so greatful for all the support from everyone during his scary hospital stay. More soon.
Leah
Over the years it has been home-schooling, trying to get Brandon to eat, trying to get Brandon to walk, trying to help Brandon communicate, the list goes on. Last two years were the years of trying to find Brandon's true diagnosis and trying to correct some of his health conditions especially his feet. I know they are sound overwhelming.
But for me this year will be the most overwhelming year of them all. In December Brandon will turn 17 and we will be one year away from becoming an adult. For a child with special needs that is very significant. He will be able to make his own decisions about his health, money, school etc. that I am not sure he can really comprehend. We will need to decide about guardianship. I will need to deal with his child support. We will need to decide if we will apply for SSI assistance for him to become more self sustained as an adult. We will need to decide if we will apply for Medicare. Brandon will have 3 more years after 18 in the school system and then his assistance will be limited. We will need to decide what he wants to do as an adult, where he will live, who will be a part of helping with these decisions and what will happen if something happens to me. These are all really hard decisions. They are complicated decisions and they require a great deal of research before Brandon reaches 18.
So this next year I will began to blog about Brandon's transition to adulthood and what we learn along the way. I am interested in setting up a Board to work through this with me and to begin support of these decisions in a group. So I will research the best way to set this up. I will go over Brandon's special needs trust and changes that will be made and I will learn and report on what is needed to apply for SSI, guardianship and Medicare. Also, I was prewarned that when Brandon turns 18 he will lose Medicaid and I will have to go through a process to restore his benefits. So I will report what I learn about this as well. Brandon is currently in the CLASS waiver program.
So I am about to start the walk through the journey of change with Brandon. Feel free to walk with me and Brandon and hopefully learn as we go through this journey.
Next week Brandon and I travel back to Dallas to hopefully have the doctor's check his current brace. It is working well, but I think he may be ready to walk without the brace or possibly a flexible brace. He is doing great since returning to school. I am so greatful for all the support from everyone during his scary hospital stay. More soon.
Leah
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