Post by Amy Lombardi on Mar 30, 2009 10:51:40 GMT -5
Subject: School
Name: Mary Beth
Date Posted: Sep 26, 08 - 9:08 AM
Email: Click here to Email
Message: Hi Everyone! I'm not sure what to do...
My son(JNCL) will be 13 and has his IEP is being reviewd/updated next month. We had some declines over the the summer- He now walks with a rollator walker, Increased behaviors(on meds), fatigues easily, Decreased motivation to want to do anything, Siezures seem to be controlled (going to neuro in Oct with EEG)When do you say enough with the academics and what do you push for? I know the school is trying but it seems some of the therapists are afraid of him. He is not responsible for a whole lot- but Do I want him challenged? This is his current IEP: All specials-(art, music, swimming, gym, library) per week; Orientation and Mobility 4x/wk 30min sessions; PT 1x/wk 30min session; OT 1x/wk 30min session; Speech 2x/wk 30min sessions; Vision Support 5x/wk 1 hour sessions for braille instruction, responsible for 10 spelling words, some math, reading and computer skills.; One period(45 mins)of Social Studies and Science(they rotate 1 chapter SS then 1 chapter Science responsible for 10 vacobulary words each chapter) The rest of his time (which is not that much) is in a life skills class going over days of the week, months, etc weather, coins and community base instruction. However since school has started I've been getting calls to decrease sessions or work load- which is OK (I think??) but what do we replace it with? I don't want him discouraged or fustrated. I know he does not retain all the information given and tests are at times difficult. So what do I do?/Should I find an advoct to help us? Do I cut academics and make it more enjoyable for him? He likes going to school and likes braille and math but hates swimming and music because they are not on his terms.(swimming is encouraged but not mandated) Any suggestions would help. Thank you.
Name: peg davis
Date Posted: Sep 26, 08 - 9:48 AM
Email: Click here to Email
Message: hello! i have/had 3 adult children with batten--school was very hard till i figured out what they needed or wanted--i did non academics for the kids--i found out that letting them do good at something they did good at was better than trying to make them do everything--if he doesn't like swimming and music then don't make him--i ended up writing the kids iep's myself--it took years to figure this out--i did have an advocate to help me with issues the school had and at the end it was just a call to her to see if i could legally ask for what i thought they needed-
i also found out i made mistakes along the way--its hard knowing what is best when they continue to change--either for the better or worse--knowing you can call an iep meeting at anytime and makes changes was very helpful--like i said i made mistakes--but could go on with new changes that helped--not only helped my child but everyone around them--when these kids are happy everyone is!!
does your child have an one to one helper/aide in school? i found this to be the most helpful tool available--dealing with this person made things go much easier--but i did have some adies that weren't what my kids needed--somehow along the way the right person came along?? if i can be of help just ask--Peg
Name: ycancio
Date Posted: Oct 8, 08 - 5:08 AM
Email: Click here to Email
Message: My grandaughter has jncl and she was home schooled last year.The dr. wrote her a prescription for her to attend school for socialization and home scool when she does not feel up to school.Do you know if this is allowed?How do your kids do this? The school here says that she must do one or the other.She can only tolerate home school one to two times a week.How would you handle this?
I would appreciate any /all feedback.We have a meeting again the 21st of Oct.
Name: Nancy Peterson
Date Posted: Sep 26, 08 - 9:50 AM
Email: Click here to Email
Message: My son participated in a school program until he was 19. Many others stay in programs until they can no longer deal with the stress and transportation. It is far to soon to stop his education program. We always concentrated on his program being planned around events and classes that he enjoyed. In hindsight, I wish I had stopped the academic pressures when it became a stress for him. Yes, you may need an advocate. In high school we had a representative from our local agency that helped fill the gap between state programs and a patients needs. Contact Amy at BDSRA for guidance and to get the contact information for Wendy Bills and Bob Wilhelm. They are our education specialists. Peg Davis (who frequently posts on the board) was a real fountain of knowledge of school programs for her 3 children. One on one aids are pretty standard now with Batten children. They need a steady advocate and companion to help them maneuver and interpret their day. Your school staff will only be afraid until they know what to do. Be strong and mount your resources and information. Go to the meeting with the idea that you are going to bring them knowledge and solutions. And remember "No" is only the first answer, it never has to be the last. You actually have the upper hand in this situation, you just need to know your rights and needs. I found that when I showed strength and determination, they came on board. Emphasize that you are all part of the team to work toward making your son's educational experience meet his specialized needs. Maybe the first thing is to find a way to have swimming when he wants it. Thus an aid. In the early years we had marathon IEP's with half the world in attendance! We always got what we needed and wanted in the end. Thankfully, the more informed we were and knew exactly what we wanted, they became shorter and simple. Some districts just have to play the "no" game, but it is only a strategy to sort out the weak and truly unreasonable.
Make those BDSRA contacts, get your information and you will have a very successful IEP. Our children's IEP's are usually more than a yearly event. Remember they can be scheduled whenever you feel there need to be changes.
Good luck, Nancy
Name: Tini
Date Posted: Sep 26, 08 - 12:08 PM
Message: Mary Beth, you know your child the best, follow your heart. My son is 20 and still attending school. He also loved reading and writing Braille. He still does a spelling list every week. When he becomes frustrated, his teacher knows to go back to easier words. Jeff was always proud of his Braille skills and to this day still loves to pluck away at the Brailler. WE gave up on Science early on(no interest). His Social Studies included presidents, because it was what interested him, history and current events. The secret is to give them enough to feel good about themselves but not too much that they feel frustrated or not enough that they aren't stimulated. Unfortunately it is trial and error, know your rights and have specific goals. It looks like you have a good school system to work with.
Name: peg davis
Date Posted: Sep 26, 08 - 11:03 PM
Email: Click here to Email
Message: hello again! one thing i was thinking about--my son had a reaction everytime he went swimming so we did not have him swim for years--then this reaction stopped and he went swimming again--3 times a week--so they do change so its important not to rule out everything--like i said before its okay to change your mind and change the iep on their needs and wants-Peg
Name: peg davis
Date Posted: Sep 28, 08 - 11:22 AM
Email: Click here to Email
Message: hello again! i've got you on my mind!! one thing you could do is give your son a choice--either swimming or some other activity--music in with the kids or music on his own terms--sometimes it is really over whelming in a large group with music or a big pool--this will or can trigger some type of behaviors---my youngests hearing was so sensitive it hurt her ears--
i was also thinking of some kind of work--him getting paid--my son crushed pop cans and took of tabs--his first check was $2.60 and it could of been for a month but he felt great pride in it--this was always available for him for a redirection when things weren't going well for him--he had alot of behaviors--
the girls would shred papers on a paper shredder--they also got paid--i bought a paper shredder for my second child thinking after she graduated she could do it at home--but i found out quickly she was retired from any work--lol--i guess she felt it was a job and when school was over so was her paper shredding!
it seems the schools have a difficult time with regression--we as parents have to be very helpful to them so our kids can have the quality that school can give them--i felt school was a helpful tool to give them more quality of life than i could give them just being at home--
one thing i found that helped was going to the library as an activity--since the middle school and high school had more advanced books than they enjoyed they went to the public library--infact the whole class bennefitted from me advocating this for my daughters--
i found the swimming pool at the school was so cold i wouldn't of wanted to go in--they kept is cold for the swimming team--so i advocated for the class to go to the YMCA--i advocated for my children and the rest of the class went--there weren't any bells to make them get out of the pool in such a short time--they went 3 times a week--one thing to be careful of is that the one to one aides didn't appreciate the swimming so don't let it be up to them--lol
i don't know what kind of calss your son is but when my girls were having trouble walking they would help by pushing the other kids in their wheelchairs--they felt important and needed--our kids need this also--
at one time my second helped with the little kids at a day care--this didn't work out because she couldn't get out of bed early enough to get their on time--she loved little kids and still does at 30!
i had written in the iep the grades the teachers could give my daughter--i think this let the teachers off the hook--so often they don't know how to grade or give a grade--i wrote in the iep what the teachers were responsible for--also the one to one aides--most of the teachers gave a P for Pass--i told them they could give them an A if they wanted--my youngest daughter was the only one of the three that thought grades were important--my other 2 could care less--i again think this might have been from her aide who was a wonderful person--it worked for her anyways--
oh i could write a book so for now i'll stop--lol--again if any questions just post them--Peg
Name: Mary Beth
Date Posted: Sep 28, 08 - 6:42 PM
Email: Click here to Email
Message: Thank you all for your input. I'm going to meet with his special ed teacher this week to figure out what we should keep or delete for now. I want to focus on the positives not the negatives. This weekend was difficult because my son came home from school saying I had It! over and over but our communication book said he had a good day. When I finally calmed him down he said science . I haven't a clue what happened but he does not want to go back. He does have a homehealth aide all day with him however she was out sick friday and a school aide was with him. I'll keep you posted. Thanks again!
Name: peg davis
Date Posted: Sep 29, 08 - 9:35 PM
Email: Click here to Email
Message: hello! i would think just having someone else than he is used to would cause him not to want to go--with my middle child she had 2 aides through school--so when was gone she had someone who knew what her needs were--i also came to the point if they didn't have their regular aide i would just keep them at home or i was paid to be the aide in school for the time the regular aide wasn't available--as you can guess i didn't work outside the home--we also had a journey that went back and forth from home to school--Peg
Name: irena
Date Posted: Sep 30, 08 - 12:38 AM
Email: Click here to Email
Message: I agree with Peg about the change in the aide, I know my daughter responds better to a dedicated person who gets to know her well. Although the individual aides or learning support worker or teaching assistants have changed over the years we have found that it is better if there is one or two constant dedicated person or people involved at any one time. I have been battling with this necessity all the time. At the moment with the start of the school/college term it is happening again (lots of staff changes) and perhaps maybe I need now to consider other options at home. We are in England and I am always very interested in hearing what happens in other countries. I know it depends on each child/ young persons progression but how long do the kids stay in "Education" in the USA and to what age does an IEP go up to?
Name: katarina Calderon
Date Posted: Sep 30, 08 - 12:56 PM
Email: Click here to Email
Message: Up to the age of 21 for both!
After that, I have no idea what happens..........
I am from England too, but have lived in America for over 20 years!
Name: Tami
Date Posted: Oct 1, 08 - 8:14 AM
Message: They have upped the age I was told at my daughters last IEP it will be 22 or 23 I can't remember for sure which.
Name: peg davis
Date Posted: Oct 2, 08 - 10:43 PM
Email: Click here to Email
Message: hello! Chad's birthday was in November and Holly in September--Hannah in July--Chad and Holly went till they were 22--cut off is September 1--Hannah could have gone till only 21 but she stopped at 18--Peg
Name: Joan Ditmar
Date Posted: Oct 10, 08 - 10:23 AM
Email: Click here to Email
Message: Hi Mary Beth, our son, Mitchell (13 with JNCL) is mainstreamed as well. Our sister-in-law, Chris VanderStel, is also a consultant with Batten. She was and is very instrumental in writing up Mitchell's IEP. Chris is a Speech Pathologist in a local school district, so has an understanding of what the schools are required to provide, as well as what the needs of a Batten child is as she is Mitchell's aunt and has watched the progression of the disease from the onset to today. I would encourage you to perhaps approach her on any thoughts/concerns you may have. Our main goal, and it is embraced by Mitchell's school, is quality of life. Mitchell has a one on one aide, as well as Teacher Consultant through the school, who monitors all his ancillary staff. It is written in his IEP that anyone and everyone who may have contact with Mitchell is educated in Batten. They view the Teach and Be Taught tape, and then Chris has also provided a group session with them. (I know, the luxury of having her local is awesome.) Another cool item written in his IEP is that he has a designated room set up with a cot, and items he enjoys as "down time"; i.e., music, balls, etc. His aide will take him into this room if the stimulation of his CI room is too much. Again, all of this is spelled out in his IEP. Trust me, it is quite lengthy, but addresses any and every issue that may arise. It is an ever changing document, as is his life with Batten.
Name: Dusti
Date Posted: Oct 17, 08 - 4:38 PM
Email: Click here to Email
Message: hi my mom could probably help. wbills@murrayschools.org her name is Wendy
Name: Mary Beth
Date Posted: Sep 26, 08 - 9:08 AM
Email: Click here to Email
Message: Hi Everyone! I'm not sure what to do...
My son(JNCL) will be 13 and has his IEP is being reviewd/updated next month. We had some declines over the the summer- He now walks with a rollator walker, Increased behaviors(on meds), fatigues easily, Decreased motivation to want to do anything, Siezures seem to be controlled (going to neuro in Oct with EEG)When do you say enough with the academics and what do you push for? I know the school is trying but it seems some of the therapists are afraid of him. He is not responsible for a whole lot- but Do I want him challenged? This is his current IEP: All specials-(art, music, swimming, gym, library) per week; Orientation and Mobility 4x/wk 30min sessions; PT 1x/wk 30min session; OT 1x/wk 30min session; Speech 2x/wk 30min sessions; Vision Support 5x/wk 1 hour sessions for braille instruction, responsible for 10 spelling words, some math, reading and computer skills.; One period(45 mins)of Social Studies and Science(they rotate 1 chapter SS then 1 chapter Science responsible for 10 vacobulary words each chapter) The rest of his time (which is not that much) is in a life skills class going over days of the week, months, etc weather, coins and community base instruction. However since school has started I've been getting calls to decrease sessions or work load- which is OK (I think??) but what do we replace it with? I don't want him discouraged or fustrated. I know he does not retain all the information given and tests are at times difficult. So what do I do?/Should I find an advoct to help us? Do I cut academics and make it more enjoyable for him? He likes going to school and likes braille and math but hates swimming and music because they are not on his terms.(swimming is encouraged but not mandated) Any suggestions would help. Thank you.
Name: peg davis
Date Posted: Sep 26, 08 - 9:48 AM
Email: Click here to Email
Message: hello! i have/had 3 adult children with batten--school was very hard till i figured out what they needed or wanted--i did non academics for the kids--i found out that letting them do good at something they did good at was better than trying to make them do everything--if he doesn't like swimming and music then don't make him--i ended up writing the kids iep's myself--it took years to figure this out--i did have an advocate to help me with issues the school had and at the end it was just a call to her to see if i could legally ask for what i thought they needed-
i also found out i made mistakes along the way--its hard knowing what is best when they continue to change--either for the better or worse--knowing you can call an iep meeting at anytime and makes changes was very helpful--like i said i made mistakes--but could go on with new changes that helped--not only helped my child but everyone around them--when these kids are happy everyone is!!
does your child have an one to one helper/aide in school? i found this to be the most helpful tool available--dealing with this person made things go much easier--but i did have some adies that weren't what my kids needed--somehow along the way the right person came along?? if i can be of help just ask--Peg
Name: ycancio
Date Posted: Oct 8, 08 - 5:08 AM
Email: Click here to Email
Message: My grandaughter has jncl and she was home schooled last year.The dr. wrote her a prescription for her to attend school for socialization and home scool when she does not feel up to school.Do you know if this is allowed?How do your kids do this? The school here says that she must do one or the other.She can only tolerate home school one to two times a week.How would you handle this?
I would appreciate any /all feedback.We have a meeting again the 21st of Oct.
Name: Nancy Peterson
Date Posted: Sep 26, 08 - 9:50 AM
Email: Click here to Email
Message: My son participated in a school program until he was 19. Many others stay in programs until they can no longer deal with the stress and transportation. It is far to soon to stop his education program. We always concentrated on his program being planned around events and classes that he enjoyed. In hindsight, I wish I had stopped the academic pressures when it became a stress for him. Yes, you may need an advocate. In high school we had a representative from our local agency that helped fill the gap between state programs and a patients needs. Contact Amy at BDSRA for guidance and to get the contact information for Wendy Bills and Bob Wilhelm. They are our education specialists. Peg Davis (who frequently posts on the board) was a real fountain of knowledge of school programs for her 3 children. One on one aids are pretty standard now with Batten children. They need a steady advocate and companion to help them maneuver and interpret their day. Your school staff will only be afraid until they know what to do. Be strong and mount your resources and information. Go to the meeting with the idea that you are going to bring them knowledge and solutions. And remember "No" is only the first answer, it never has to be the last. You actually have the upper hand in this situation, you just need to know your rights and needs. I found that when I showed strength and determination, they came on board. Emphasize that you are all part of the team to work toward making your son's educational experience meet his specialized needs. Maybe the first thing is to find a way to have swimming when he wants it. Thus an aid. In the early years we had marathon IEP's with half the world in attendance! We always got what we needed and wanted in the end. Thankfully, the more informed we were and knew exactly what we wanted, they became shorter and simple. Some districts just have to play the "no" game, but it is only a strategy to sort out the weak and truly unreasonable.
Make those BDSRA contacts, get your information and you will have a very successful IEP. Our children's IEP's are usually more than a yearly event. Remember they can be scheduled whenever you feel there need to be changes.
Good luck, Nancy
Name: Tini
Date Posted: Sep 26, 08 - 12:08 PM
Message: Mary Beth, you know your child the best, follow your heart. My son is 20 and still attending school. He also loved reading and writing Braille. He still does a spelling list every week. When he becomes frustrated, his teacher knows to go back to easier words. Jeff was always proud of his Braille skills and to this day still loves to pluck away at the Brailler. WE gave up on Science early on(no interest). His Social Studies included presidents, because it was what interested him, history and current events. The secret is to give them enough to feel good about themselves but not too much that they feel frustrated or not enough that they aren't stimulated. Unfortunately it is trial and error, know your rights and have specific goals. It looks like you have a good school system to work with.
Name: peg davis
Date Posted: Sep 26, 08 - 11:03 PM
Email: Click here to Email
Message: hello again! one thing i was thinking about--my son had a reaction everytime he went swimming so we did not have him swim for years--then this reaction stopped and he went swimming again--3 times a week--so they do change so its important not to rule out everything--like i said before its okay to change your mind and change the iep on their needs and wants-Peg
Name: peg davis
Date Posted: Sep 28, 08 - 11:22 AM
Email: Click here to Email
Message: hello again! i've got you on my mind!! one thing you could do is give your son a choice--either swimming or some other activity--music in with the kids or music on his own terms--sometimes it is really over whelming in a large group with music or a big pool--this will or can trigger some type of behaviors---my youngests hearing was so sensitive it hurt her ears--
i was also thinking of some kind of work--him getting paid--my son crushed pop cans and took of tabs--his first check was $2.60 and it could of been for a month but he felt great pride in it--this was always available for him for a redirection when things weren't going well for him--he had alot of behaviors--
the girls would shred papers on a paper shredder--they also got paid--i bought a paper shredder for my second child thinking after she graduated she could do it at home--but i found out quickly she was retired from any work--lol--i guess she felt it was a job and when school was over so was her paper shredding!
it seems the schools have a difficult time with regression--we as parents have to be very helpful to them so our kids can have the quality that school can give them--i felt school was a helpful tool to give them more quality of life than i could give them just being at home--
one thing i found that helped was going to the library as an activity--since the middle school and high school had more advanced books than they enjoyed they went to the public library--infact the whole class bennefitted from me advocating this for my daughters--
i found the swimming pool at the school was so cold i wouldn't of wanted to go in--they kept is cold for the swimming team--so i advocated for the class to go to the YMCA--i advocated for my children and the rest of the class went--there weren't any bells to make them get out of the pool in such a short time--they went 3 times a week--one thing to be careful of is that the one to one aides didn't appreciate the swimming so don't let it be up to them--lol
i don't know what kind of calss your son is but when my girls were having trouble walking they would help by pushing the other kids in their wheelchairs--they felt important and needed--our kids need this also--
at one time my second helped with the little kids at a day care--this didn't work out because she couldn't get out of bed early enough to get their on time--she loved little kids and still does at 30!
i had written in the iep the grades the teachers could give my daughter--i think this let the teachers off the hook--so often they don't know how to grade or give a grade--i wrote in the iep what the teachers were responsible for--also the one to one aides--most of the teachers gave a P for Pass--i told them they could give them an A if they wanted--my youngest daughter was the only one of the three that thought grades were important--my other 2 could care less--i again think this might have been from her aide who was a wonderful person--it worked for her anyways--
oh i could write a book so for now i'll stop--lol--again if any questions just post them--Peg
Name: Mary Beth
Date Posted: Sep 28, 08 - 6:42 PM
Email: Click here to Email
Message: Thank you all for your input. I'm going to meet with his special ed teacher this week to figure out what we should keep or delete for now. I want to focus on the positives not the negatives. This weekend was difficult because my son came home from school saying I had It! over and over but our communication book said he had a good day. When I finally calmed him down he said science . I haven't a clue what happened but he does not want to go back. He does have a homehealth aide all day with him however she was out sick friday and a school aide was with him. I'll keep you posted. Thanks again!
Name: peg davis
Date Posted: Sep 29, 08 - 9:35 PM
Email: Click here to Email
Message: hello! i would think just having someone else than he is used to would cause him not to want to go--with my middle child she had 2 aides through school--so when was gone she had someone who knew what her needs were--i also came to the point if they didn't have their regular aide i would just keep them at home or i was paid to be the aide in school for the time the regular aide wasn't available--as you can guess i didn't work outside the home--we also had a journey that went back and forth from home to school--Peg
Name: irena
Date Posted: Sep 30, 08 - 12:38 AM
Email: Click here to Email
Message: I agree with Peg about the change in the aide, I know my daughter responds better to a dedicated person who gets to know her well. Although the individual aides or learning support worker or teaching assistants have changed over the years we have found that it is better if there is one or two constant dedicated person or people involved at any one time. I have been battling with this necessity all the time. At the moment with the start of the school/college term it is happening again (lots of staff changes) and perhaps maybe I need now to consider other options at home. We are in England and I am always very interested in hearing what happens in other countries. I know it depends on each child/ young persons progression but how long do the kids stay in "Education" in the USA and to what age does an IEP go up to?
Name: katarina Calderon
Date Posted: Sep 30, 08 - 12:56 PM
Email: Click here to Email
Message: Up to the age of 21 for both!
After that, I have no idea what happens..........
I am from England too, but have lived in America for over 20 years!
Name: Tami
Date Posted: Oct 1, 08 - 8:14 AM
Message: They have upped the age I was told at my daughters last IEP it will be 22 or 23 I can't remember for sure which.
Name: peg davis
Date Posted: Oct 2, 08 - 10:43 PM
Email: Click here to Email
Message: hello! Chad's birthday was in November and Holly in September--Hannah in July--Chad and Holly went till they were 22--cut off is September 1--Hannah could have gone till only 21 but she stopped at 18--Peg
Name: Joan Ditmar
Date Posted: Oct 10, 08 - 10:23 AM
Email: Click here to Email
Message: Hi Mary Beth, our son, Mitchell (13 with JNCL) is mainstreamed as well. Our sister-in-law, Chris VanderStel, is also a consultant with Batten. She was and is very instrumental in writing up Mitchell's IEP. Chris is a Speech Pathologist in a local school district, so has an understanding of what the schools are required to provide, as well as what the needs of a Batten child is as she is Mitchell's aunt and has watched the progression of the disease from the onset to today. I would encourage you to perhaps approach her on any thoughts/concerns you may have. Our main goal, and it is embraced by Mitchell's school, is quality of life. Mitchell has a one on one aide, as well as Teacher Consultant through the school, who monitors all his ancillary staff. It is written in his IEP that anyone and everyone who may have contact with Mitchell is educated in Batten. They view the Teach and Be Taught tape, and then Chris has also provided a group session with them. (I know, the luxury of having her local is awesome.) Another cool item written in his IEP is that he has a designated room set up with a cot, and items he enjoys as "down time"; i.e., music, balls, etc. His aide will take him into this room if the stimulation of his CI room is too much. Again, all of this is spelled out in his IEP. Trust me, it is quite lengthy, but addresses any and every issue that may arise. It is an ever changing document, as is his life with Batten.
Name: Dusti
Date Posted: Oct 17, 08 - 4:38 PM
Email: Click here to Email
Message: hi my mom could probably help. wbills@murrayschools.org her name is Wendy