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I'm torn and I need opinions

post #1 of 7
Thread Starter 

My daughter is 8. She's been diagnosed with ADHD and Absence seizures that progress into grand mal if not regulated with medicine. We've been struggling with her medications (which is typical for some kids), but in the mean time she still has to go to school and to her summer programs, which is the purpose of this thread.


No matter how much explanation I try to lend to school officials and care takers, they still seem to miss the point that some of her behaviors are caused by the seizure activity itself. She can be defiant in that when she is having a seizure, reasoning with her is like trying to explain the existence of the cosmos to a brick wall: It's just not happening. She becomes angry or fearful and acts accordingly, though her normal baseline is generally sweet and outgoing. The only thing that can be done in this situation is give her a quiet space to cool her jets until she feels like she can deal with "normal" activities again, but, such as this morning, when I try to explain this to them, they deny that it has anything to do with seizures and act like she's trying to get out of having to do things. I suspect that they also do not give her transition warnings (such as "We're going to clean up in five minutes") to help her cope with the ever changing tide that is a school or school like environment.


Because of their inability to recognize these things, I'm considering homeschooling my daughter. She's globally delayed as a result of her condition (I estimate that she's probably blanked out on half of her experiences). She has sclerosis of the hippocampus which makes learning even more difficult for her and she continues to fall further and further behind because it would seem that no one knows how to deal with her issues appropriately, even the special ed teacher (her school doesn't have a very good rating to begin with, so I'm sure you can imagine what kind of malfeasance is going on there). My sister is an educator in the same district, so I feel like it would be of embarrassment to her to withdraw my child from their system (her school has an excellent rating in spite of similar demographics to my daughter's school). I feel like my daughter's making it clear that these environments are not suitable for her, in spite of the fact that she enjoys going. I realize the need to have her engage in social activities, but as it pertains to her school work, I feel like the more children and noise there is around her, the less she is going to be able to process and understand. What would you do if presented with a similar situation? Would you take your special needs child out of school if you thought it was doing more harm than good?


(She does have an IEP, a behavior plan, and as I said, I have tried to explain what's happening, but I've had it up to my eyeballs. If we continue with public education, I feel like I'm going to have to contact the Epilepsy foundation to have them come in and explain what's happening with my daughter because they're just not listening.)

post #2 of 7
Welcome to Mothering.com. I think you will find some understanding voices here. I totally get what you are saying. At about that age, I withdrew YoungSon from school for similar reasons. Although he was in a special ed classroom, they didn't understand that his behavior was caused by his diagnosis (autism in his case), not defiance. No number of charts and stickers were going to change that. And he had learning disabilities that they really could not address. In our situation, it was the best decision I have ever made. For us, there was no gap in the social activities. He still had friends in the neighborhood, played soccer, and occasionally attended classes at the Rec Center. Today, he is 17, attending public high school (his choice), and still has several good friends. His social skills are awkward in some situations, but I feel sure that is due to the autism, not home schooling. Generally, he is head and shoulders above expectations we had for him years ago when he was diagnosed. Please go ahead and work with the Epilepsy Foundation, whatever decision you make. You may also find support through The ARC, or your local department of Developmental Disabilities. Special needs parenting is a lonely road, but support is available! Check over in the Homeschooling forums here at MDC - you will find other families who are homeschooling kids with disabilities. I don't mean to assume you have already decided one way or another. But you may be able to get a picture of what your life would look like if you made that choice.
post #3 of 7
Thread Starter 

Thank you so much for your reply. I really appreciate any and all advice I can get on this topic. My daughter also has difficulty relating to sticker charts. It's like the consequence doesn't even seem to register or matter to her because it seems so far away.


When I was in high school, I chose to withdraw and begin homeschooling for emotional reasons, so I am familiar with the process and where to look for state standards and such as a jumping point for what we should include in our content. I know that she has inherited a couple of learning disabilities from me (sometimes words appear scrambled up, dyslexia, and sometimes I transpose numbers, dyscalculia). It's not stretch of the imagination to say that she also gets her ADHD from mom either. lol

post #4 of 7

hug2.gif  I don't have any solid advice -- I wish I did.


My DD is on the autism spectrum and at times, figuring out what would work for her educationally has been a bit of a nightmare. We used public school, private school, and homeschooled at different points, and this last year she started at community college at 16. 

Whatever you decide, it can be Just For Now. You aren't making a lifetime commitment to anything. If you do decide to homeschool, I suggest hiring a tutor for a subject or two, because homeschooling a child with LDs just isn't like homeschooling a child who learns easily. I also suggest finding ways to get time to yourself and care for yourself, which is both more necessary and more challenging to make happen with a sn child.


And while there is a lot of support for homeschooling her on mothering, there is very little real knowledge of educating special needs kids, and a big bent toward unschooling/they will get it when they are ready. This is absolutely NOT appropriate for some special needs kids, such as my DD. So take the emotional support, but leave whatever educational advice you get that doesn't feel right to you *for your child.*


If you decide to continue with school, bring in experts or hire an advocate. I know that you are sick of it and up to your eye balls, but if you stay, it really is OK to be a PITA to get your child what she needs. Is she currently mainstreamed? Is more time in resource an option, is another placement, such as a self contained classroom an option? What about a one on one aid?


Some kids do really play up their disabilities to get out of things and it is hard for school personal to tell when that is happening and when it isn't happening. When my DD was in public school, we had it added to her 504 that she could go to either the social workers office or the special needs teachers room AT ANY TIME without even speaking to another teacher. But she had school anxiety such that that social worker had to come out to the car and walk her into the building. They were just happy she was inside the school. Being her class all the time was in unreasonable expectation.


Are there any other options where you live -- charters? private schools?  Check into all your options.


And don't worry about your sister. I work at a school, and there are employees who do different things with their special needs kids. It's hard enough to figure out what is right for a sn kid -- let get of what other people think about it. It doesn't matter what they think.


hug2.gif - sorry none of this is clear advice about what your next step should be. I've been there, which is how I know there isn't an easy answer.

post #5 of 7

I have no experience with the homeschooling question but would like to chime in with totally unasked for ass-vice, wondering whether your daughter is on a ketogenic diet?

Ketogenic dieting has a long and distinguished track record with medically intractable epilepsy (check out Wikipedia - it's mainstream medicine, not wacky dietary advice).

These guys have perfected it into almost an art form: www.perfecthealthdiet.com

It would be hard to implement with a kid who was in mainstream school but perfect to introduce while homeschooling.

post #6 of 7

I have a couple of thoughts.  First, I have definitely seen exactly what you are speaking of in epileptic children (not my DD, but others).  Sometimes the acting out is part of their "aura."  They sense the seizure coming on and become reactive.  I have seen some kids work well with a bracelet that you encourage them to pull at if they feel they are going to have a seizure, it eventually becomes an subconscious event, but clues people around them that a seizure is imminent.  You could also ask about home-bound services.  If your doctor will agree to writing that it is medically necessary, you an have a teacher come out to your home and provide lessons.  You will still need to do work with her everyday, but the lesson planning, etc will all be done by the teacher.  This is what we do.  Usually an increase in seizure activity, need to monitor for medication changes, etc can all be used as rationale.  The school has to provide the least restrictive environment, and home-bound is considered the most restrictive, so it needs to be a medical necessity.  You could try it for a semester and see how it goes.  This would allow you to work with her at home, without withdrawing her from school.  You could then choose to keep her on home-bound, withdraw her completely to home school, or send her back to school.  the school district would still have to provide the therapy services listed in your IEP as well.


I have heard some great things about the ketogenic diet, but it can be VERY dangerous with some conditions, so I would encourage you do discuss it with your doctor before you try it.

post #7 of 7
If your dd is having auras, then it sounds like partial seizures not absencehttp://professionals.epilepsy.com/page/generalized_absence.html . I think that needs to be discussed or reevaluated with the neurologist. Some meds can cause seizures, if they are not for the right type or dosage. Plus, timing of the med needs to be extremely consistent. Something we learned about ds aed, is that when it peaks he is less able to remember or focus. Some of the meds he has taken amplify his ADHD behaviors- some kids are more sensitive to the side effects. Ketogenic diets can be effective, but are used as a last resort generally because they are so restrictive and lack many necessary nutrients- 3/4 of the food ate is fat.

School has been hit or miss for my ds. The Epilepsy foundation does have teacher training, but we have been unable to get any of ds's teachers trained because they do not have time. In the fall he has 3 yr. IEP evauluation, and we are working on getting a health plan in place to help school nurse work with teachers. This is a separate evaluation from IEP, but same agency. It is different from the emergency seizure plan. Sometimes easier to get school nurse trained and have them work with teachers to train (or so I have been told).
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