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Post by mrskatvon on Jul 29, 2009 13:38:27 GMT -5
My oldest daughter, Rachel (9) was just diagnosed with JNCL. Rachel is the product of my first marriage and our other three children are the product of my second/current/forever marriage. While we are going to get my husband tested to see if he is a carrier, I'm not going to lose any sleep over the possibility of our other three.
We live south of Boston and I am having a hard time figuring out what the next step is for Rachel and her education. Perkins School for the Blind is on the other side of Boston and too far for Rachel to travel on a daily basis. I am also unwilling to consider her being a residential student. Ultimately I think she needs to be in a special school but don't really know of any others. We lived in Colorado Springs before here and I spoke with them yesterday and they were/are familiar with JNCL.
Can anyone share any schooling recommendations? I want to extend her functionality for as long as possible and feel that would happen with a multi-sensory approach that would be offered in a School for the Blind.
She is at 20/250 or 20/300 right now. Its hard to know exactly with her language difficulties.
Thank you.
- Kat
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Post by chawkins on Jul 29, 2009 21:43:02 GMT -5
Hi Kat, I am dad to two JNCL kids Brandon 12 and Jeremy 8. Our boys are in public school as the NC School for the Blind is over two hours away. Early on in another school district we had tremendous difficulty getting the services that our oldest needed, but our current school system(Cabarrus County) has been FANTASTIC in supporting us. I guess what I am saying is to do what's best for Rachel and fight for what you think is best.
Our goal at school is to have a good day, if they happen to learn a lot that day great. If it is not going to happen maybe we go for a walk or help out in the office, whatever.
Good luck, and feel free to contact me at chawk328@ctc.net if you want to talk offline!
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Post by lestyboss on Aug 1, 2009 10:25:37 GMT -5
What we did with our son, diagnosed at the age of 7, was let him stay in public school. We did this for several reasons. We wanted him to be able to feel normal, to try to let him live a normal life as long as possible.
I also felt that other kids should be able to learn how to socialize with special kids. Most of the kids already knew him, so the kids would question about him as they saw changes, or when he seizures, but they never picked on him. Actually they were quite helpful, and curious to learn what he was learning. They grew to love him, and I hardly went to the store or anything without a stranger kid telling me they knew who I was, and that my son was a really cool kid.
The school for the blind would come his school and teach him as well as the other teachers once a week. Any braille equipment he needed, they brought to him there. Yrs later there came a time, when the school and I felt a one-on-one aide would benefit him, he was becoming less independent. This was wonderful for him, and the school was pleased as well. It wasn't until he was a freshman in high school that we put him in a special class, it was just too hard for him to get around. He completed 3 yrs of high school, in public school, before I had no choice but to pull him out.
It doesn't always work out for everyone, a lot depends on the schools you are near, or what is or is not available, or what choice would benefit her the most. But whichever choice you decide to make, there are accommodations out there available for you.
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Post by corrina on Aug 2, 2009 12:38:13 GMT -5
Hello!
My son is 12 and was diagnosed at age 6 with JNCL. We have kept him in public school too. The school system we were originally in was really great and provided him with everything we knew he needed and things we didn't know he needed. He did go into a special education room starting in third grade because we felt it would be less pressure for him. He did and continues to go to regular classrooms for various classes. He is going into 7th grade this year.
Our current school system has had a few bumps as they've learned to deal with some of the issues involved in a disease which causes decline and regression. However, we seem to have gotten to a good place now.
We live about 30 minutes away from the school for the visually impaired here. I don't want him in a residential program either and it is too far to drive him every day. If i truly did not think I could get him a great school expirience here I would take him there but so far we've had success with both school systems.
Ultimately you have to do what is best for your daughter and family but I would say to give your public school a chance and be prepared for some bumps along the way.
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tinim
New Member
Sometimes the miracle we get is not the miracle we asked for.
Posts: 15
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Post by tinim on Aug 3, 2009 20:48:35 GMT -5
Hi, I am sorry to hear of your daughters diagnosis. My son Jeff also attends public school. He is 21 and this will be his last year. He learned braille and was quite adept at reading during his junior high and early high school years. He has lost a lot of that ability, but he still enjoys typing away on his brailler. Every child is different in their capacity of learning. Do what is best for your daughter, your local school district should be able to provide all the services she would need. You will need to become a strong advocate. Jeff was evaluated during 7th grade by our states school for the blind and surprisingly they advise us to keep him in the public school, where he was familiar with everything and that the services he was getting was "pretty darn good". It is what you think is best, there is no right or wrong answer. Just be firm when requesting services and learn to pick your fights.
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Post by nolansmom on Aug 4, 2009 15:12:44 GMT -5
Hello New Mom! It stinks that we have to meet this way...we were all in your shoes at one point or another..the biggest recommendation I can give is for you to get a social worker (if you have not already) Invite them to all IEP meetings with your school. Our social worker has been wonderful in helping us get thru to our school what our needs are and what we need to make it work. My son is 6 and has Late Infantile, but he still attends public school. He has an aide and the school has been wonderful for designing an IEP plan to fit what we want him to get out of school. He has declined significantly over the last year, but still enjoys a lot of what school has to offer. Good luck to you!
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Post by bobby1966 on Aug 6, 2009 22:38:50 GMT -5
Hello. I am the father of two children with Batten's Disease. My son passed away August 15,2003 10 day's before his 13th birthday and my daughter just passed away July 28,2009 at the age of 17. My son went suddenly and shocked us, my daughter was in pretty bad shape for the last two years so it is a blessing that she no longer has to go through this terrible disease. I am so sorry to hear of your bad news and I wish you the best. I have a question for you though. My nephew was in town with my sister for the funeral and he is 8. What kind of signs other than vision is your child displaying? My nephew has me worried because of some of the things he does. He has very little vision problems but he reminds me of my son with some of the things he display's. Thank you for taking time to read this and my heart goes out to you..Bobby Jones Palm Coast, Florida.
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Post by maroon40 on Aug 8, 2009 21:19:10 GMT -5
Hi new JNCL Mom! Sorry to hear about your daughter. My son Aaron is 13 1/2 and was not diagnosed untill he was 12. He attends public school. When he lost his sight we were going to send him to a blind school but it was too far and I could not let him be a resident student also. He stayed in regular education classes untill he could no longer handle the work load. He had braille instruction daily with his vision teacher, orientation and mobility instruction, and speech therapy 2X/wk. Once his cognition declined enough we pulled him out of all academic classes (REG- ED) and put him in a learning support/life skills class where he does things at his own pace. He loves to braille out words and numbers it is something he remembers alot of. You need to sit down with your daughters teachers and discuss her learning capablilties to come up with the right plan for her. You can get help from BDRSA someone can come out to your school and talk with your teachers and answer some of their questions. They helped out at our school last year even the art teacher had questions. Amy Kirk-Lombardi can help you out with that info . All of the children with Battens are so different but yet so the same that there is no right or wrong answer. Good Luck.
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Post by mrskatvon on Aug 9, 2009 6:23:06 GMT -5
Hello. I am the father of two children with Batten's Disease. My son passed away August 15,2003 10 day's before his 13th birthday and my daughter just passed away July 28,2009 at the age of 17. My son went suddenly and shocked us, my daughter was in pretty bad shape for the last two years so it is a blessing that she no longer has to go through this terrible disease. I am so sorry to hear of your bad news and I wish you the best. I have a question for you though. My nephew was in town with my sister for the funeral and he is 8. What kind of signs other than vision is your child displaying? My nephew has me worried because of some of the things he does. He has very little vision problems but he reminds me of my son with some of the things he display's. Thank you for taking time to read this and my heart goes out to you..Bobby Jones Palm Coast, Florida. My daughter was very slow to learn and has had a hard time "getting things" since she first started school. It is my understanding (now) that she had the speech delay that is common in my family and at the point where she should have caught up, Batten disease took over. A few years before her vision was clinically recognized, her main problems were expressive and receptive language, poor working (short-term) memory and inattention. The inattention has definitely gotten worse every year. Rach stayed back in the first grade and has never been on grade level since starting school. Hope that helps. - Kat
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Post by mrskatvon on Aug 9, 2009 6:26:53 GMT -5
Everyone: thank you so much for replying to this thread. Every piece of experience I can gain from other JNCL parents is profoundly helpful to me and the decision making process. At this time I believe that Perkins (the school for the blind) is too far for her to travel daily to and she is definitely not read (and neither am I) for the residential program. Rachel has had a functional vision assessment at the very last part of the school year and we will be meeting to discuss those results within the first week or so of school. They'll also be doing a O & M assessment for Rach. At this point she is in a "normal" homeroom with a paraprofessional on a 1:1 basis and will do mostly special education classes. I hope that as she progresses the other children become tolerant and kind to her. The thought of children teasing her because of this disease makes me cry every single time. I didn't quite expect parenthood to be like this but I'm sure none of you did either. Thank you again. Kat
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Post by peg davis on Aug 9, 2009 23:41:27 GMT -5
hello! i had 3 children with Batten in the regular school setting--they each had a one to one aide with them at all times--i also didn't want them to be teased and this is the one way i knew i could protect them--it worked--
what also helped when they were in middle school was for them to go to non acidemic classes--like art-shop-they were in a special education classes for a home room and a place to call home--the two older kids went till they were 22 and the youngest stopped going at 18--
i feel the school gave them what i couldn't--at times it was a struggle --its hard for schools to deal with regression--at the end i would write the IEP's myself and the team would rewrite it whatever they wanted--i didn't care if they got what they needed--Peg
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Post by corrina on Aug 13, 2009 8:59:36 GMT -5
We have not had problems with this, even with changing school districts. I think kids today are more sensitive because mainstreaming has been around so long now. Perhaps, as Peg suggested, having an aide is helful as well. Clifford has had an aide since second grade.
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Post by nanabarca on Oct 24, 2009 21:35:31 GMT -5
I'm very sorry to hear of your daughter's diagnosis. My daughter also received her diagnosis at age 9 and although we knew of the vision problems in a way it was a relief to finally understand the learning issues as well. It took a lot of pressure of my daughter and luckily her school was very supportive in putting her in a special ed class that just let her feel successful and have fun. I agree too with some of the comments that most kids and others who interact with our special kids are great. I think these Batten kids have the amazing gift of bringing out the best in people. I have very fond memories of everything who worked with my daughter over the years. Listen to your gut, I think, is the best advice to follow. If you think another school or even another teacher at her current school would be better don't be afraid to speak up. You know her best and will make the best decisions on her behalf. Good Luck!
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Post by mrsskavaton on May 27, 2010 23:14:15 GMT -5
hello to all with juvenile battens children, I have a son age 19 who lost all his vision between the age of 5-8, started having seizures at age 10 and was diagnosed at age 13. I believe that Perkins School for the blind is a fabulous place for Battens children. My son and his roommate both had battens disease and they attended Perkins from age 10-16. They were both so happy being in a school where they were accepted and they excelled. The problem is that as parents we do everything for our children to keep them safe. Perkins had me fill out a questionairre about what my son is able to do at age 10 as far as chores around the house. I did everything for him...He didn't even make his bed. I will never forget the decision that I had to make to pull my son out of a regular school system and send him away. He was going into 6th grade reading 2nd grade braille. He also has a twin sister that is perfectly healthy....please contact me at rrenee.doyle@gmail.com with any questions. I will always remember the day I left my son at the school for the first day...I cried the whole ride home...but he loved it...within 3 weeks he would ask me on sunday what time he was going to get to go back to school...
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