I have 12 year old twin boys with Autism and uncontrolled seizures. Twin A has had absence seizures since he was at least 5 and started meds at 8. Around 10 he came off the medications because none helped to control the seizures and they are non harmful to the brain. He ended up developing grand mal seizures. The first medication we tried caused him to have 26 grand mal seizures out of 30 days!! So we switched him to another medication. He is no longer having full blown grand mals but is/was having the beginnings of them. Like calling out with strange noises and some facial contractions. Now that has developed into drop seizures. My point is they are uncontrolled. The boys already have IEP's in place and health care plans that need more. I also want to do a 504 just so all my ducks are in a row. I want to know what reasonable accommodations are for a child with uncontrolled epilepsy? With his combined issues I believe a one on one is reasonable. More for the seizures than the autism tho he does need help there too he is high functioning. The seizures to cause his behaviors and autistic tendencies to come out more on a high seizure day. Some days are worse than others.
Twin B is even higher functioning autistic and has almost no behavioral issues that cause him to need extra support staff tho he does need some extra educational help in some areas like reading. Right now he is not on medication and still just having absence seizures. He had no control in the same time frame he was on them like his brother. His absence seizures tend to cluster in the mornings so for a hour or two he can go in and out from them in seconds. He ends up missing a lot of educational instructions in the mornings. He does have them trough out the day as well but here and there not nonstop like in the mornings. What reasonable accommodations should I expect for him?
I also have a daughter who is type one diabetic and currently fighting for her rights for the staff to be trained on giving her emergency life saving glucagon if needed. This is a district matter tho. I know the staff at the school wants to help but we have new teachers in the autism room and a principle at the school. With their annual IEP's coming up I know I will need to be overly prepared for all these matters.
So does anyone know what reasonable accommodations are in general for kids with uncontrolled epilepsy?
Cindy I tend to be the advocate for most matters concerning my kids. I do the research on their rights and get things done for them that need to be done. I just cant seem to find the information I am looking for on this. I found sample 504 plans for this but they are generic.
Allison there is not a special school here. We have a autism program in the schools. They covered the needs concerning their seizures last year no problem this year they have a lot more students and not enough coverage. This is why I need the 504 put into place so they are covered both educationally and medically at school.
Thank you Karen that site looks like it will be very helpful.
Gailski my daughter is the first person in our family to have type one diabetes. The boys blood sugars have been checked in the past and I have checked them a few times here at home. I have not however ever checked their fasting levels. So today when they wake up I am going to. I honestly feel like they are allergic (more or less) to waking up! Their seizures are stronger and more frequent in the mornings than any other time of day. Even tho they do have them all day long.
They have had health care plans but we never did a formal 504. It wasnt really needed last year it was just taken care of. This year they are understaffed so there is no one to just cover them. So in order for them to be covered I need to do all this the formal way. Really this school is a great school there have been way to many changes in staff its more like they are in over their heads. The new staff is anyhow. I am getting support from many people at the school. At this point and with me already being so vocal I doubt I will have to do more than ask but I know how districts work. I want to be overly prepared for them so they have no room to argue my requests.
Hi J.,
Have you been to Wrightslaw.com? I'll bet you will find answers regarding 504's there. I've used it for IEP's and it's been very helpful.
Good luck!
cintact the special education department at the school district, talk to your peditriciain, find any and all agencies (profit/non profit) who deal with disabalaties, talk around to others who have children with special needs, talk to teachers outside of your school. In denver we have an agency that deals with all ages with disabalaties *(developmental disabality resource center...DDRC). Contact them and ask questions and ask if there are agencies similar to them where you live or close by. You can contact child find (again, this is what it is called in Denver). They are the special education cordinators for pre-school aged services. Contact a children's hospital, a pediatric nurse...medical professional may have ideas. My last two suggestions are research info on No child left behind and american disabality act...somewhere it may tell you about school and medical issues and learning...
good luck!
Though I don't know much about autism or seizures, my greatest source of help for my daughters LD's has been Greatschools.org formerly CharlesSchwablearning.org. They have a great section on LD's including autism, and have a really great archive of past articles. They also have a section on legal rights and advocacy. Another great website for legal questions regarding LD's is wrightslaw.org I'm surprised that your children aren't already on 504's since they all have "medical" diagnosis'. Start at your school level, and keep at it to get the 'help' for your children that they/you need. If that doesn't work, go to the next level and work your way up. If need be, go all the way to the Colorado Department of Education. Your child can not be denied a free and appropriate education no matter what funding cut backs there have been. Are there any support groups for Autistic/Seizure or even twin groups with LD? That might also be an area to look into. Children's Hospital Learning Services department might be able to direct you to some advocacy/support groups. I hope that these links give you some information as to where to start. Best of luck.
I don't have any good answers for you and I am sorry for that. However, do you have a private advocate? This is someone you hire that works for you and knows the system and they fight for you and on behalf of your children. You need to be the biggest fighter for your kids and push the school district. Start checking with other parents of kids at the schools to find out how things are done. Good luck and prayers are coming your way.
1st.. you should also see if their are special schools in the area.. talk to the school board about this.. they will pay to bus your children to a school that can help.. it may be a few miles away... but it may be better equiped.. check this out first.. some schools have good education for children who can learn but they are equiped for problems... having seizures is a hard thing if the teachers aren't prepared for this.. does your child have helmet? if not .. he may need one.. because of brain injuries if he should fall when having a seizure.. talk to the school board and see how they can help you... is having a teacher come to your home.... maybe this will work.. and the school will have to do this.. good luck..
Hi mama,
I was just wondering if you had the boys checked for Hypoglycemia?
Because it causes sezuires. And then i read that diabetes runs in your family - It made me even more suspecting of it.
My daughter has hypoglycemia caused by adrenal insufficiency. Although her blood tests at times look fine. She DOES have blood sugar problems - her adrenals do not put out enough cortisol and aldosterone. This is not a rare condition but is often/always overlooked in those with blood sugar problems. no one ever checks the adrenals. Adrenal insufficiency can be a cause of autisitc / aspergers problems as well.
Another thing that can cause abnormal blood sugar fluctuations is low chromium. High selenium intake can cause low chromium. high selenium is suspected for some causes of diabetes.
tests: 24 hr SALIVA cortisol (not just morning cortisol!)
aldosterone and renin levels testing
Hi J., I have epilepsy and I have found the epilepsy support centre in my area (I now live in Ontario) has been a great resource. Check with your Dr. to see what is available in your area. (I found my dr.s rarely readily gave this information.) Also, epilepsy.com has fantastic information. Best of luck.
Even though this site is for Utah families, there are some resources in there that might be helpful.
http://www.utahparentcenter.org/
Additionally, there might be similar resources in Colorado. I like that it is parents who've "been there" helping other parents.
I don't know your personal situation, but I might suggest looking into a form of home school. Colorado has Colorado Virtual Academy through the K12 system that sets up all curriculum for you. It is a free, public education, and because they are a public school, they should be able to provide any special educational services you might need. I know of many autistic kids who thrive in this type of a situation because the sensory input at home is much more controllable than in a middle school! It isn't for everyone, but it might just be another option to explore. Good luck with everything!
Hi J.,
Have you contacted PEAK Parent Center? The new SPEAKout, their newsletter address the new upgrades on 504 plans and "mitigating measures", things that have an effect on kids and 504 plans. Check out "Ask a Parent Advisor" http://speakout.peakparent.org/
