It has been a busy few months for Brandon and me. At the first of the year Brandon started his personal network of friends. I think I have blogged about this previously. But the main reason for developing a personal network for Brandon is to have more than me having the knowledge about everything Brandon, having a great group of people help brainstorm ideas to support Brandon's great life and a support network to find resources for the future. I have probably stated why we wanted to start a network for Brandon better in previous blogs. Since our January meeting a smaller group has formed. We have met twice and will meet again in June. Our main focus is on the good life plan Brandon developed in Jan. with the larger group. The group worked with Brandon's main goal of wanting to be the King of Rock n Roll. Not an easy task, but one we are all taking very seriously. Since Jan., the group has helped Brandon discover the Goodwill summer job training program, found Brandon a Rock n Roll camp, helped re craft his special needs trust, helped with a modified child support order and a new trust, found a set of drums, sent exercises to help with Brandon's fine and gross motor issues, helped work through choosing guardianship or power of attorney after Brandon turns 18 and started the application for SSI for when Brandon turns 18. I also have found through the group some great transition trainings, webinars and connections in the community. Brandon is also starting to socialize with a friend network. Brandon has developed his own Beatles Blog, emailing some friends and starting to deal with his own laundry and his room. We are also planning a plane trip to see Brandon's brother Patrick in August. The network has really been helpful already and having the plan developed has made it much easier.
I few updates. Brandon was selected for the Goodwill Summer Work Program and will be working with Dennis Borel at the Coalition of Texans with Disabilities. Dennis and I are friends, but this placement was completely random. This will be Brandon's first job and he and I are very excited. I am excited because I think this will be a great positive first job for him. He is excited because he will earn $7.25 per hour and can buy lots of CDs and DVDs.
Also I found through the network the VSA Teen Apprenticeships in Arts and Drama Summer Program. Brandon has done this program before and it is really great. It is through VSA Arts of Texas (http://www.vsatx.org/ ) and he really loved it.
Normally I would not put this detailed of personal information on the web but I wanted to share with other families trying to find resources for their kids.
Lastly some medical news. Brandon and I went to Dallas to Scottish Rite this week to check his foot. Everyone believes the foot operated on is doing great and the other foot does not need surgery at this time. Great news for us. Scottish Rite does want to follow Brandon's scoliosis further and took several x-rays before we left. We will not need to return for at least 6 more months. Great news.
Next week Brandon will go to the University of Houston for a final vision assessment for the DARS vision services. This will determine if Brandon will meet the Texas definition of blind and receive transition services through the vision section at DARS. Think good thoughts. The program is really good.
Lastly some bad news, after my last blog Brandon had a seizure and became disoriented at school. He also had an extreme headache and was off balance. It continued most of the day and out of precaution we decided to have Brandon checked at Dell Children's Hospital. For those of you who are fortunate enough to never had to go to the Children's ER, this means at least 6 hours in the hospital (minimum). It took 1 1/2 hours to get there and it was almost 6 hours before we left. Brandon appeared to have developed a bad migraine. He was given several medication to get rid of the migraine. Once the migraine was gone Brandon's balance came back. It was a little scary because it looked similar to a stroke. All is well now and we are back to non-stop Beatles. I knew Brandon was really sick because he didn't listen to any music or talk the whole day. Unusual for him.
More later
Leah
Friday, May 21, 2010
Sunday, May 9, 2010
Happy Mom's Day
Brandon and I had a great mom's weekend. We took my mom out to lunch Saturday at the Mandola Vineyards in Driftwood with my brother. Brandon gave me my mom's day wish of sleeping late today and we had a nice lunch with my friend Kate and Brandon in Dripping Springs. Basically a great mom's day weekend. Brandon came in this morning and said "Happy mommies' day mom" and there have been many hugs and kisses all weekend. I have always told Brandon that the great thing about being a mom is that mom's get hugs and kisses whenever they want. He loves that and so do I. That is the great thing about Brandon he never gets too old or too tired of hugs and kisses.
I look back over the years at all those mom moments I wish I could change. The time I gave Brandon as an infant an adult dose of my cough syrup thinking it was his seizure medication and had to stay awake all night to watch him; the time he broke his foot and I thought it was just a sprain after a visit to the doctor only to find out a week later he had really broken it and in the meantime I made him walk on it at Patrick's boot camp graduation. I couldn't understand why he was so whinny and then feeling really bad when I found out it was really broken. The time we were at our property clearing brush by the "swimming hole" when Brandon slipped in and I found him at the bottom of the swimming hole (not more than a few seconds but scary), and you know all those times I forgot lunch for school, didn't quite get the schedule right for the day or two sitters show up at the same time.
Then I look back on all those great moments like the first steps Brandon took at 4 after I just received his new wheelchair; the first time Brandon ate food through his mouth at 5 following1 month of rehabilitation in the hospital. Brandon's first Christmas in ICU after his birth with all the great nurses caring for him; the first time I heard Brandon say "mama" and I could understand him; those great Beatles duets we sing in the car; the day the doctor's said Brandon is taking more food by mouth than through his g-tube; the day I finally was able to have all machines unhooked to Brandon at night; the time when Brandon did not need any more night nursing at age 7; the 18 months of home school when I learned how smart Brandon really was; the first sentence Brandon formed on his communication device; the first time Brandon voluntarily spoke after the class I took helping me to learn how to communicate with Brandon; the time Brandon accepted his award for the Beatles movie he made that won second place at a local film festival and all those good comments from people who have been touched by Brandon's sweetness. But the best thing I can say as a mom is that Brandon is happy and for me that is a great success.
With the exception of the few scary illnesses in Brandon's life I would not change a thing from the last 17 years. Brandon has really taught me what is really important in life and how to appreciate those things, a lesson some people never get to experience.
So for all you mom's out there, especially you single mom's - we hope you had a "Happy Mommies Day". You deserve it.
Leah
I look back over the years at all those mom moments I wish I could change. The time I gave Brandon as an infant an adult dose of my cough syrup thinking it was his seizure medication and had to stay awake all night to watch him; the time he broke his foot and I thought it was just a sprain after a visit to the doctor only to find out a week later he had really broken it and in the meantime I made him walk on it at Patrick's boot camp graduation. I couldn't understand why he was so whinny and then feeling really bad when I found out it was really broken. The time we were at our property clearing brush by the "swimming hole" when Brandon slipped in and I found him at the bottom of the swimming hole (not more than a few seconds but scary), and you know all those times I forgot lunch for school, didn't quite get the schedule right for the day or two sitters show up at the same time.
Then I look back on all those great moments like the first steps Brandon took at 4 after I just received his new wheelchair; the first time Brandon ate food through his mouth at 5 following1 month of rehabilitation in the hospital. Brandon's first Christmas in ICU after his birth with all the great nurses caring for him; the first time I heard Brandon say "mama" and I could understand him; those great Beatles duets we sing in the car; the day the doctor's said Brandon is taking more food by mouth than through his g-tube; the day I finally was able to have all machines unhooked to Brandon at night; the time when Brandon did not need any more night nursing at age 7; the 18 months of home school when I learned how smart Brandon really was; the first sentence Brandon formed on his communication device; the first time Brandon voluntarily spoke after the class I took helping me to learn how to communicate with Brandon; the time Brandon accepted his award for the Beatles movie he made that won second place at a local film festival and all those good comments from people who have been touched by Brandon's sweetness. But the best thing I can say as a mom is that Brandon is happy and for me that is a great success.
With the exception of the few scary illnesses in Brandon's life I would not change a thing from the last 17 years. Brandon has really taught me what is really important in life and how to appreciate those things, a lesson some people never get to experience.
So for all you mom's out there, especially you single mom's - we hope you had a "Happy Mommies Day". You deserve it.
Leah
Friday, April 23, 2010
Tuesday, March 23, 2010
What's in a label
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
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
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