This question is for parents with school-age kids.
I have been trying for 2 years to get my son OT in the school. After his bleed and the craniotomies to remove his AVM, he lost a quarter of his vision field, developed a visual-motor deficit, and has the fatigue and frustration common to people with ABI. Because of the visual-motor deficit, his eyes and hands don't work together, and he can't accurately copy from one source to another. The school is denying that he is special needs, and won't set up an IEP. He has had neuro-psych testing, and mutliple reports from OT saying that he needs help, and the school still fights with me. Is there anything that parents have found to be successful when advocating for their children?
Insist on a psycho-educational assessment. They are expensive and school boards only allow so many per school per year. In our school board ( Trillium Lakelands DSB) OT is provided through CCAC (Community Care Access Centre)
Just remember you may not be “an expert” but you are the expert on your son… Make sure his teacher and school knows it.
I want to add that you as the parent have much more power than the school would like you to believe. If you are not happy make sure the school board knows. At one point on out journey I mailed a letter and picture of our sonstoevery dueronterdemt in our board. I wanted them to be reminded that he was a boy first not just his diagnosis or a number in the classroom. I documented every conversation. As
Good luck.
Sorry about the spelling. Brain is beginning to shut down and auto correct on my phone took over.
Stephanie said:
I want to add that you as the parent have much more power than the school would like you to believe. If you are not happy make sure the school board knows. At one point on out journey I mailed a letter and picture of our sonstoevery dueronterdemt in our board. I wanted them to be reminded that he was a boy first not just his diagnosis or a number in the classroom. I documented every conversation. As Good luck.
He had a neuro-psych done through Sick Kids, and was diagnosed with 2 learning disabilities. He has a processing speed issue (which his dad has, so we think is unrelated) and a visual-motor deficit. Since he is not failing, the school seems to think that he is fine. The CCAC is involved, as is our trustee and superintendent.
Fun fact: when telling the school that he needed another surgery because his AVM is back, we were asked to get a note from his neurosurgeon expressing that the operation was medically neccesary!
A psycoeducational assessment is a school board measuring tool. The have a psycomatrist (sp?) on staff that will spend a few hours with your son to administer the test. Sometimes they discredit what other professionals have to say but they can’t ignore their own. I feel your frustration.
Kris Walker said:
He had a neuro-psych done through Sick Kids, and was diagnosed with 2 learning disabilities. He has a processing speed issue (which his dad has, so we think is unrelated) and a visual-motor deficit. Since he is not failing, the school seems to think that he is fine. The CCAC is involved, as is our trustee and superintendent.
Fun fact: when telling the school that he needed another surgery because his AVM is back, we were asked to get a note from his neurosurgeon expressing that the operation was medically neccesary!
I’m sorry to hear you are having problems. My childrens school goes overboard to make sure that my girls get everything they need. I know that when we had problems with the schools unrelated to the AVMs, all we had to do was threaten to go to the school district and complain and everything changed. They will do anything to keep the district out of it.
Kris, I completely understand your frustration. Believe me, I understand. Similar battles here with my 9-year-old. It took two years for them to get services when she’s got a 50 percent left-side field cut, slower processing speed, executive functioning deficits, etc. The rest of my daughter’s therapies are private because school says she isn’t discrepant enough from her peers. We have done neuro-psych testing, but school doesn’t care about those results. They actually told me that they don’t have to pay attention to those tests and reports. And my daughter’s tests were done at Mayo Clinic in Rochester, Minn. I have talked to principal, lots of promises but little action. I have talked to the district’s head of special education, which seems to have helped. I also went to the State Board of Education. I’ve been promised several things in the past 24 hours, but until I see any action, I cannot tell you for sure anything has worked. I’m debating transferring to a different school.
Sorry to hear of the frustration with schools. Most are well meaning. Wife taught for 30+ in remedial reading (mostly NOT federally funded, which has it’s own set of standards and rules).
Money is the big issue with all schools now, and having extra staff to handle all the special needs kids is a struggle. Generally, the kids with the most issues get priority, and if your child is only slightly in need, might not get help. I laugh when I recall years ago, Chari had the son of a local CEO in her class. The boy needed some remedial help, but the school was reluctant to offer it to him. In a meeting with the staff/principal, the CEO after hearing their assessment said “OK, so you are telling me my son is not far enough behind now to give him some help, but if we wait until he get WAY farther behind, then you will help him? That is Stupid!” The kid got the help he needed right then.
Another thing to be aware of–at least in our state–Teachers and school staff WILL NOT state the obvious fact to the parents for fear that if the school identifies it, the school has to pay for it. For example, if the teacher here notices a kid is having trouble seeing, when she speaks to the parent, she won’t say “Have you had her eyes checked?” That makes the school liable to pay. Goofy I know. So the teacher will say things like "Your child is having trouble getting the assignments down from the board. He tends to squink."
Only when the parent says “Do you think it might be his eyes?”, then the teacher can say, well, yes, that is a strong possibility. Stupid I know. So you have to listen carefully to what the teachers are saying and NOT saying.
Chari now helps sometimes with children with dyslxia and have trouble reading. She holds a Masters in Learning Disabilites and has subsequent training to help dyslexic kids learn to read. But she CANNOT diagnose dyslexia–that takes a medical doctor! So even though she can spend 2 hours with the child, and be 95% sure the issue is dyslexia, only when the parents have paid about $1500 for medical testing will the schools recognize it and maybe provide help. In Kansas, I’m sorry to say, Dyslexia is NOT identified as a learning disability, so it outside the scope of special ed… Fortunately for the kids, dyslexic kids generally qualify for assistance under other recognized issues, so they can get help.
Recently, Chari attended a mtg at the request of a parent. They were told this child could not get an IEP (Individual Education Plan I think) since the school already had too many in place according to the state. DUH? After arguing, they agreed to an IEP, but it takes a fight.
The other issue is most teachers can recognize and could recommend assistance needed, but they are reluctant to say the truth if the principal has said “no more”. That’s where if any of you are having issues with schools, speak to the teacher in private, or consult another local teacher for guidance. Some schools have an ombudsman that might help. Or speak with a board member, especially one that has recently been a teacher.
Hope this helps. It really makes me mad when parents don’t get the help the kids need due to bureaucracy.
Thanks for the info, Ron. I know the budget cuts are a factor. Our school district has been told NOT to write any 1:1 IEPs this year, since they cut over $3 million from the special ed budget this year. But that’s not what’s happening with my daughter. My daughter’s school has refused several free offers for training in regards to brain injuries. The school has admitted that they don’t have the time to make accommodations for my daughter, even if the accommodation is for the teacher to write in dark colors on the white board, or not to require my daughter to take timed tests.
Thanks for another point of view. I am pretty stuck in “help my kid” mode. Honestly, I will pay for any thing that will help my kid, I just need the school to okay it. It seems that Tina and I are in a similar situation. I offered for help wo come to school, and was refused because my son is not failing yet. As long as there are “regular” kids doing worse than him, he is not a priority. Erg. And, I feel bad because I am creating a two-tiered school system, because I am paying for things out of pocket. We got him a laptop, and are trying to get the okay for dictation software. (His eyes no longer track properly, so he has a lot of problems with writing. There is at least a two year gap between his written and oral work). It`s so hard fighting with people that my kid is NOT okay.
Ron, KS said:
Sorry to hear of the frustration with schools. Most are well meaning. Wife taught for 30+ in remedial reading (mostly NOT federally funded, which has it's own set of standards and rules).
Money is the big issue with all schools now, and having extra staff to handle all the special needs kids is a struggle. Generally, the kids with the most issues get priority, and if your child is only slightly in need, might not get help. I laugh when I recall years ago, Chari had the son of a local CEO in her class. The boy needed some remedial help, but the school was reluctant to offer it to him. In a meeting with the staff/principal, the CEO after hearing their assessment said "OK, so you are telling me my son is not far enough behind now to give him some help, but if we wait until he get WAY farther behind, then you will help him? That is Stupid!" The kid got the help he needed right then.
Another thing to be aware of--at least in our state--Teachers and school staff WILL NOT state the obvious fact to the parents for fear that if the school identifies it, the school has to pay for it. For example, if the teacher here notices a kid is having trouble seeing, when she speaks to the parent, she won't say "Have you had her eyes checked?" That makes the school liable to pay. Goofy I know. So the teacher will say things like "Your child is having trouble getting the assignments down from the board. He tends to squink."
Only when the parent says "Do you think it might be his eyes?", then the teacher can say, well, yes, that is a strong possibility. Stupid I know. So you have to listen carefully to what the teachers are saying and NOT saying.
Chari now helps sometimes with children with dyslxia and have trouble reading. She holds a Masters in Learning Disabilites and has subsequent training to help dyslexic kids learn to read. But she CANNOT diagnose dyslexia--that takes a medical doctor! So even though she can spend 2 hours with the child, and be 95% sure the issue is dyslexia, only when the parents have paid about $1500 for medical testing will the schools recognize it and maybe provide help. In Kansas, I'm sorry to say, Dyslexia is NOT identified as a learning disability, so it outside the scope of special ed........ Fortunately for the kids, dyslexic kids generally qualify for assistance under other recognized issues, so they can get help.
Recently, Chari attended a mtg at the request of a parent. They were told this child could not get an IEP (Individual Education Plan I think) since the school already had too many in place according to the state. DUH? After arguing, they agreed to an IEP, but it takes a fight.
The other issue is most teachers can recognize and could recommend assistance needed, but they are reluctant to say the truth if the principal has said "no more". That's where if any of you are having issues with schools, speak to the teacher in private, or consult another local teacher for guidance. Some schools have an ombudsman that might help. Or speak with a board member, especially one that has recently been a teacher.
Hope this helps. It really makes me mad when parents don't get the help the kids need due to bureaucracy.
Tina- I see we are from the same state. But our school has been so helpful!!! We had the AEA Brain Injury team (well- one person) come and talk to staff and explain what happened and what to expect and they helped out with Sarah's 504 plan. I can't thank the school enough for being so understanding and helpful through all of this. I'm not sure how big your school is, but we are a small school. I can't see how the school can not make time for a student who needs it!! It's sad to hear how so many people have had problems with this. I guess we are very fortunate that way!
But on the otherhand, I have seen other kids that the school thought would qualify for special services (PT,OT) but when evaluated by AEA, did not qualify so not always up to school/teachers either. But still can't imagine the school turning down free training!!!!
Tina White said:
Thanks for the info, Ron. I know the budget cuts are a factor. Our school district has been told NOT to write any 1:1 IEPs this year, since they cut over $3 million from the special ed budget this year. But that's not what's happening with my daughter. My daughter's school has refused several free offers for training in regards to brain injuries. The school has admitted that they don't have the time to make accommodations for my daughter, even if the accommodation is for the teacher to write in dark colors on the white board, or not to require my daughter to take timed tests.
My daughter also has visual deficits. Double vision, field cut, etc. Our school just doesn't understand how a brain injury affects a child's learning. I have been told that my daughter needs to be failing to qualify for services. So my choices are pay for tutoring and supplies out of pocket or let her flunk. School allowed her to take the annual standardized test untimed as an accommodation, yet they expect her to take a timed math test on a weekly basis. Holy cow. What the heck do they expect? School has to ask the local brain injury specialist to be part of the "team" before they will allow her to participate in the plans for Rose's team. Yet they refuse to do so. No idea why.
Kris Walker said:
Thanks for another point of view. I am pretty stuck in "help my kid" mode. Honestly, I will pay for any thing that will help my kid, I just need the school to okay it. It seems that Tina and I are in a similar situation. I offered for help wo come to school, and was refused because my son is not failing yet. As long as there are "regular" kids doing worse than him, he is not a priority. Erg. And, I feel bad because I am creating a two-tiered school system, because I am paying for things out of pocket. We got him a laptop, and are trying to get the okay for dictation software. (His eyes no longer track properly, so he has a lot of problems with writing. There is at least a two year gap between his written and oral work). It`s so hard fighting with people that my kid is NOT okay.
Ron, KS said:
Sorry to hear of the frustration with schools. Most are well meaning. Wife taught for 30+ in remedial reading (mostly NOT federally funded, which has it's own set of standards and rules).
Money is the big issue with all schools now, and having extra staff to handle all the special needs kids is a struggle. Generally, the kids with the most issues get priority, and if your child is only slightly in need, might not get help. I laugh when I recall years ago, Chari had the son of a local CEO in her class. The boy needed some remedial help, but the school was reluctant to offer it to him. In a meeting with the staff/principal, the CEO after hearing their assessment said "OK, so you are telling me my son is not far enough behind now to give him some help, but if we wait until he get WAY farther behind, then you will help him? That is Stupid!" The kid got the help he needed right then.
Another thing to be aware of--at least in our state--Teachers and school staff WILL NOT state the obvious fact to the parents for fear that if the school identifies it, the school has to pay for it. For example, if the teacher here notices a kid is having trouble seeing, when she speaks to the parent, she won't say "Have you had her eyes checked?" That makes the school liable to pay. Goofy I know. So the teacher will say things like "Your child is having trouble getting the assignments down from the board. He tends to squink."
Only when the parent says "Do you think it might be his eyes?", then the teacher can say, well, yes, that is a strong possibility. Stupid I know. So you have to listen carefully to what the teachers are saying and NOT saying.
Chari now helps sometimes with children with dyslxia and have trouble reading. She holds a Masters in Learning Disabilites and has subsequent training to help dyslexic kids learn to read. But she CANNOT diagnose dyslexia--that takes a medical doctor! So even though she can spend 2 hours with the child, and be 95% sure the issue is dyslexia, only when the parents have paid about $1500 for medical testing will the schools recognize it and maybe provide help. In Kansas, I'm sorry to say, Dyslexia is NOT identified as a learning disability, so it outside the scope of special ed........ Fortunately for the kids, dyslexic kids generally qualify for assistance under other recognized issues, so they can get help.
Recently, Chari attended a mtg at the request of a parent. They were told this child could not get an IEP (Individual Education Plan I think) since the school already had too many in place according to the state. DUH? After arguing, they agreed to an IEP, but it takes a fight.
The other issue is most teachers can recognize and could recommend assistance needed, but they are reluctant to say the truth if the principal has said "no more". That's where if any of you are having issues with schools, speak to the teacher in private, or consult another local teacher for guidance. Some schools have an ombudsman that might help. Or speak with a board member, especially one that has recently been a teacher.
Hope this helps. It really makes me mad when parents don't get the help the kids need due to bureaucracy.
That's just incredible. It took AEA 14 months to finally have a vision specialist do an assessment even though we knew from day one that Rose had a left-side field cut (among other visual deficits). AEA has determined that Rose does not need any services from them except the vision specialist. If we think she needs therapy, we have to find a private way to handle it (while school hassles me about the time away because of therapy). We are in WDM, so it's a big district. They have had several offers for BI specialists to come in to talk to them and help them understand. They refuse every offer. Heck, my daughter had an IEP in place for 2 months before I finally contacted school to ask when they were going to start making the accommodations.
You have been fortunate to have a supportive school. That makes things so much simpler when they WANT to understand. Maybe we can transfer to your school? :-)
Deb (Sarah's mom) said:
Tina- I see we are from the same state. But our school has been so helpful!!! We had the AEA Brain Injury team (well- one person) come and talk to staff and explain what happened and what to expect and they helped out with Sarah's 504 plan. I can't thank the school enough for being so understanding and helpful through all of this. I'm not sure how big your school is, but we are a small school. I can't see how the school can not make time for a student who needs it!! It's sad to hear how so many people have had problems with this. I guess we are very fortunate that way!
But on the otherhand, I have seen other kids that the school thought would qualify for special services (PT,OT) but when evaluated by AEA, did not qualify so not always up to school/teachers either. But still can't imagine the school turning down free training!!!!
Tina White said:
Thanks for the info, Ron. I know the budget cuts are a factor. Our school district has been told NOT to write any 1:1 IEPs this year, since they cut over $3 million from the special ed budget this year. But that's not what's happening with my daughter. My daughter's school has refused several free offers for training in regards to brain injuries. The school has admitted that they don't have the time to make accommodations for my daughter, even if the accommodation is for the teacher to write in dark colors on the white board, or not to require my daughter to take timed tests.
In Ontario it is mandatory that schools educate themsleves about ABI (Ha, ha.) In fact, they are supposed to have at least one copy of the above resource, and all teachers are supposed to read it. (Been at two schools, had to give both a copy.) Some of the info is Ontario specifc. However, it does a pretty good job of expalining some of the "hidden" disabilities. Hopefully, it can help some people elsewhere, as well.
Sounds like you live in Nevada. I have the same problems. Our schools don’t give a flying fart in space about the kids. And with the bad economy it’s gotten worse. The elementary school just kicked my friend’s son off his IEP. He has autism,add,bi-polar,epilepsy,helmet, glasses( blind in 1 eye),leg braces for his neuropathy,feeding tube, mental retardation and is on 19 meds a day. The school says that he is a normal child. I can’t get jack for my kids. I’ve been trying for almost 8 eight years. Good luck.
If you can even get a IEP/504 meeting, you can get anybody you want in the meeting. You do not have to have the school’s permission. You can even bring a lawyer (I actually recommend that) even though the school says you can’t.
Erin,
Sounds like your friend’s got a great case a good lawyer can either force the school to follow the law OR the friend can end up with enough $$$$$$$$$$$$$$$$$$$$$$ to hire her own educational support!
What appears to be “working” for me right now is daily emails to the principal, trustee and superintendent, explaining how, once again, my son’s IEP has been violated, with an explanation (again) of his issues, and why he needs help. Since he has another surgery coming soon, I am kind of giving up on this year, and planning for next year. I got advice from my uncle, who is a psychologist in another school board that 1)I should only use school resources for testing purposes, because they can just disagree with the conclusions of outside experts and 2)should have an ABI expert come and talk to the school, as I am now a crazy parent.