IEP Struggles

[kellykay]

My son is on an IEP..He is 16 years old and has ADD and a traumatic brain injury. He is hard to handle at times and very head strong. From what I have been told is he has lost his power to reason things out. On top of this he is a complex thinker his doctor says. He has lesions on his brain from his accident which also create headaches. He also has an anger problem. To top all of this off he is very smart and bored at school. His special ed teacher and him do not get along. He says she yells..I have explained to her that raising her voice to him does no good..she looses him the moment she raises her voice. It is obvious to me she does not know how to handle a child like him. Be it that she is very young or just did not get the training i am not sure. Im frusterated. I get called at least once a week and brought into meetings. Today again i got called into a meeting for monday because he was kicked out of his math class. I am a single mother with no college education and am doing the best that i can with him. I dont have the problems at home that they do at school because i know how to speak to him and handle him better. This last thing that has me upset is she seems to have a smart mouth where he is concerned. He went to her today to tell her his bus did not show up and she informed him he should start walking. He told her he lives 9 miles away and she informed him he should have started walking during first period then! ...excuse me but isnt the IDEA here to keep my child in school not encourage him to miss school? And why couldnt she empathize with him and offer to assist him with finding out where his bus was or point him in someones direction that could help him? Could someone please help explain to me what this teachers job is and what i should expect from her?

[HaoZi]

You should be able to expect her to respect your child, his abilities, and his disabilities. Have you gotten an advocate for him and called for a case conference?

[kellykay]

No..How do i get an advocate for him?

[HaoZi]

I'm guessing here since I have no personal experience with TBI (though others here do and should be along with more suggestions), but starting with NAMI or a TBI association might be a good start, even if all you get is a few ideas on who better to call. Or ask the doctor that handles the TBI issues if he knows or would be willing to give your number to a parent with a similar problem that has found an advocate.
Check your state's education department as well as federal sites, too.

[buddy]

Hi there. I am a single mom and I have a son with a brain injury too. he is 14, 8th grade and quite delayed. He is autistic as well and he too has behaviors at school. I get called nearly daily and have to go to school often. It seems that schools do well on many things (if they are good schools) but one of the poorest trained areas of special education is brain injury. These kids are very very different than adhd, ld, EBD, ASD, etc. May I ask, Is your son's primary disability area OHI for the ADD or is it TBI. I think if you can make his primary disability TBI with ADD as a secondary it may help some in the district psychologically speaking. It is not that services will change but it may make them remember to pull in the district TBI experts every single time there is an issue. Did he have adhd before the accident? Different people act as TBI specialists in districts. Often it is psychologist or speech language pathologist. Does he have speech lang. on his IEP.? It could be a related service if he has any social communication issues such as not interpreting subtle social cues (including someone's warped sense of humor).

Does he have a behavior plan. The mandate is that if there is any concern for a child who has repetitive behavior issues and especially if he has or appears to be in need of special education services, that they need to do a functional behavior assessment in order to work on behaviors in a positive way instead of through punishment. It is called an FBA and you can request it. The plan written is called different things in different places but will be something like a PBIP or BIP meaning Positive Behavior Intervention Plan. The idea is to identify behaviors very specifically, what is motivating the behaviors (fatigue, meds, escaping hard work, headaches, anger with teacher, bright lights, communication skill deficits, attention seeking (warning, attention seeking and such words are often erroneously assumed to be causes, along with defiant, blah bah blah). Then to arrange his environment to help to ovecome the issues. If he needs to learn tools to work through things, then they need to be taught, if he needs rewards for accomplishing things then they do it, etc. If at any time the plan doesn't work then they need to figure out why not just go back to punishment. If you already have one, then it is time to do a new one or add to it for these behaviors that he is struggling with. Just MHO.
I really understand how frustrating it is that people do not understand the inability/inconsistency of a person with TBI to be flexible at times, to problem solve as well, to maintain attention in different situations, that they will have inappropriate moments etc. And a huge problem is that it can be very inconsistent which makes people think that, since they can be so successful at times, that they are just choosing to misbehave.

There are other kids on this board who are TBI/ABI as well. Is he on MA or private insurance? Can you call your county and ask for TBI services? If you haven't they may be able to help too.

I also use our state brain injury association to help at times. THey are more focused on Traumatic Injuries and my son has an injury from a brain mass so they are not as good for us as some other agencies have been. But in your son's case, maybe?

If none of this is helpful, please know it is okay. Bottom line is you are not alone and I welcome you to this lovely, caring group of people. This is an immensely supportive group. If you are ever just needing to "talk" I have found this is the place to come. I must compliment you on providing such a great home for your son that you do not have such intensive struggles at home. You must really know him and what he needs in his safe place (home).

[kellykay]

Wow, I have never heard of most of the things you have mentioned! I am very misinformed on all of this! Until the school board brought the TBI man in i didnt even understand the extent of his injuries or the long term effects this all would have on him! I thought..Ok we had the injury..(surfing on the trunk of a car is not a good thing! lol) It would heal right? This was 2 years ago. A year ago he was having headaches and they found lesions on his brain..sent us 200 miles from home to see a specialist who explained nothing to us just said no sports of any kind and to watch him. He was put on the 504 right after the accident then last year he switched to the IEP. The IEP gave me some room for negotiating with his teachers..NOT to suspend him every other day or send him to the office to sleep ect. But this year it seems like i am back to square one with this new teacher. I dont know what an advocate is or how to get one..they do bring in the TBI specialist when we have meetings. The special ed teacher wanted him back on ritalin but his doctors and all other teachers pricipals ect do not think he needs to be on it. It doesnt seem to change anything just makes life at home harder because of the crash he has when it wears off. I dont think there is any kind of behavioral plan with him..just the IEP paper. Im writing all your suggestions down so i can be armed with information on monday. I have called his counselor at school and reported the incedent with the teacher today and did mention i was looking up the IEP laws and requirements because i was so lost at what to do with this teacher and what my rights are as a parent. He strongly agreed and now im waiting for a call from the pricipal. I worry that now he is 16 and in the state of oregon that is the legal age you can quit school. Its like they say well he is old enough now so lets not help him. He has a very awesome sense of humor but a very smart mouth also..We know at home he is playing but other people do not then when they get defensive he gets defensive trying to explain himself. He is smart..very high IQ i believe but is bored also at school. Not much holds his interest for long. I thought going half days and half days online would be an improvement but seems to be getting worse. Thank you so much for the help and if you think of anything more i should know please tell me! I want to be armed and informed for that meeting! Sorry i was so all over the board with this lol Oh and his TBI is listed first then his ADD..he has had ADD since 7th grade..he was on ritalin but removed from it and now on an antidepressant which helps him sleep to relieve the headaches and hoping to alter his moods..2 weeks on this med and it doesnt seem to be doing anything but making him tired?

[kellykay]

Ok here is another concern of mine and maybe someone has some answers....My son is 16 the TBI and the ADD...How do i know if its the ADD or the TBI or him just being a bratty 16 year old? I dont want to use the TBI as a crutch and the TBI specialist that comes to the meetings said he reviewed his records and the most problems started after the TBI. He has anger issues and has had some form of that anger since he was younger. I have asked about anger management at each one of these meetings and our school system does not offer anything like that. We are on a state funded insurance so have restrictions on medical treatment for him. The person driving the car he was popped off of did not have auto insurance and was only 17 at the time so no coverage there either.

I dont know how long these lesions will last, What the long term effects they could have on him, Can they be dangerous? ect..And dont feel like im getting any answers from his doctors.

[buddy]

I'm sure more people will pop in and help too. NAMI is a great idea as well as the other places mentioned to look for an educational advocate. There are lawyers who can help, but expensive and some advocates are paid too but just try to find the ones thru parent advocacy orgnizations. Make sure they are versed in special education laws and procedures.

Some websites to check out are PACER (and if you are comfortable putting your state in people from that state can give you specific places to call) which is in MN but consults nationally. Their webstie is PACER Center - Assistance for Children with Disabilities, Teen Bullying, Parent Programs and you will find TONS of information on behavior plans and laws etc....federal law is federal law. yes some states add but they must meet the minimum requirements in federal special ed. law (IDEA) Another amazing website is http://www.wrightslaw.com/

hang in there...you are doing a great job, it is crazy that feeling of banging your head against the wall year after year...

Brain Injury Association of Minnesota this has good tbi information and may lead you to your state or a national site

[HaoZi]

Child welfare agencies in your area might be able to provide some help or point you towards someone who can to get extra services like anger management. Does he have a therapist? If not, that's another thing to look into for behavioral help, perhaps one with experience with TBI towards independent living later.

[Hound dog]

Welcome to the board.

Buddy gave you some excellent advice.

Another two things I can think of; 1. contact your state board of education, tell them the issues you're having and your gfg's dxes and they'll find the laws to help PLUS if school doesn't comply you call them back and they force the school to comply. (this alone saved me many many many times) 2. You might consider having a neuropsychological eval done on your son as it would be helpful in pinpointing the specific areas he is now having issues in post TBI such as sensory, organization, impulse control, emotions, learning issues, language issues ect ect. What is going to be affected depends on where the damage is, even subtle damage can cause issues.

Oh......and if you have a neurologist who doesn't explain, find a children's hospital as close as you can and try them, ask them about their neurology clinic (they'll tell you if they don't have one) and give them his dx because if they have a doc who speicializes in it, you'll see that doc. Actually I'd do this regardless as gfg is still a child, a teen, but yeah.

My son had a TBI at birth and another at 18. If you can pinpoint where your son's issues are, there are usually ways to help work around them or to help him adapt.

I had a TBI 8 yrs ago. I *thought* I understood what my son's issues were due to my medical background (I did grasp it better than most) but I had no clue in any real sense. Now that I share many of the same issues he has.........and the same frustrations, wow, whole different ballgame. My main issue is short term memory. Until about 3 yrs post injury it was basically toast. Now I can remember, but I seem to have little control over what I remember or when my brain just shuts off and goes blank (literally). Numbers are my enemy. I transpose numbers and letters. Math is a challenge. Plenty more but that gives you the idea. Everyone is different depending on where the damage was and the extent but well......yeah.

It's very difficult to get others to really understand because it's not a disability you can see. I hated working with the school as far as Travis' TBI issues. Hated it. Those were the ones I usually had to call the state school board over.

((hugs))