Questions about ADHD and Epilepsy

[stringbean]

I again am already having problems with my youngest daughter, Charlisa's teacher. It has been a routine since kindergarden, in k she had a wonderful, caring teacher who did all she could to help Charlisa make it to 1st grade without having to be held back. Now it goes like this every other year she has a teacher that just seems to not give a **** about my child, as far as helping her to better understand and crasp what what is being taught her. Charlisa was held back in second grade because she was just not grasping all that she should know well before going to third grade, this really helped her, plus she has been in Reading and Math lab every year except last. Are these darn people gonna wait until it is to late to get her more ready for middle school which in this state starts in 5th grade and alot of parents and others are trying to get 5th and 6th graders back in elementary.

Charlisa didn't show any signs of absence seizures for about a year and half, however now we are keeping a closer watch on her again because of her blank stares and having to say her name several times before we can get her attention, we are just not sure if this is absence seizures or has to do with her ADHD or both.

I called the principal last Thursday to set up an appointment with her, and she really aggravated me, I was advised by my sister who is working on getting her degree to teach elementary school and she told me that Charlisa shoud be tested for IEP (Individual Education Plan) becuase she shows many signs of needing this and this principal told me that this was a handicap and in so many words let me know that she does not believe in ADHD and would not set up a appt. for this test. I have not been receiving hardly any graded papers at all other than the ones in her math workbook which are all D's and 1 F, plus maybe 4 other graded ones with not so good grades on them, other than spelling tests which she has always done good in spelling when it is the test. How are we supposed to know what she majorly needs our help also like they want us parents to do, however we have to know what she needs the most extra help with. Last year she brought home A's and B's and her graded papers were all sent home in a folder for us to see and keep and we had to sign a paper in the notebook to let her teacher know that we saw them. And this principal told me that it was to early in the school year to be concerned about such, well bull, I have been told by more than one person that she is totally incorrect on that. I took Charlisa to her reg. doc and she is setting up the testing.


My husband and I are going for a conference with the principal and her teacher on Wed. I have gathered alot of info on ADHD, IEP and now working on gathering info on absence seizures also.

I could just go on and on, sorry this is so long,
I guess I needed to let off some steam and also ask for any advice, experiences, and more about this situation.

Thanks for Listening
Tammy

 

[skillefer]

Oh wow! Okay....as a special ed. teacher, I'll tell you right now that federal law requires the school to test your child for eligibility for an IEP within a certain number of days. Now, for some advice....

1) Put all requests in writing, and keep a photocopy for your own records. Have the school secretary or whoever you give the request to, sign it. Then ask for your photocopy. This is your receipt, and your proof that you did make a request.

2) Kids with ADHD as well as Epilepsy can qualify for an IEP under the eligibility of Other Health Impaired. What this placement criteria states is that basically the OHI is effecting the academic performance of the child.

3) At the meeting you have on Wednesday, bring a tape recorder, set it on the table for everyone to see, and advise them that all meetings will be recorded. Yes, it can be seen as antagonistic, but if your principal is going to refuse to test your child, then it's time to hold the school responsible.

4) Remember, YOU are your child's best advocate. If that means playing hardball, so be it.

If you have any questions, feel free to ask.

 

[haird18]

Skillefer got it right!

They need to test your child for anIeP and get involved in ivolved in the inclusion program too! So child will get extra benehicial help and stay involved. Because I know when they screwed me around too!
David

 

[stringbean]

Sorry it has taken me so long to reply. My brain has been taking its turn holding me back from alot of things plus the migranes I have been having every other day.

We couldn't make it to the first conference because I was having alot of pretty intense partials and then the day of the rescheduled conference a complex partial hit me.

So now Charlisa's teacher's planning period is in the middle of the afternoon and my husband would have to miss a whole day of work to be able to go with me.

At this point I am just not sure what to do, her teacher called Wed. I let the answering machine get it because I was fighting a migrane, anyway, she asked if we could discuss our concerns over the phone and to call her.

I am still gathering alot of info and am considering talking to her teacher on the phone to begin. And then when Charlisa's gets her first report card mark on the envelope want to meet with the teacher, these conferences are in the evening and both her father and I can go.

Charlisa has been bringing home more graded papers and doing pretty well in all subjects except math. We still have alot of problems at home getting her attention and to get her to concrentrate on her homework. She also has made the comment, "I'm just dumb and can't learn" she downs herself alot. She shows other signs of needing this IEP testing, which still has not been scheduled by her doctor.

I did purchase a tape recorder and plan to use it.
And wil make sure I get copies of everything and have things signed. Every school year so far we have been our daughters best advocate and had to play hardball more than once.

I greatly appreciate your advice and information.
I will keep you posted on how things go.

Thank You,
Tammy

 

[RobinN]

You need to get the testing started. Not sure how the doctor plays into the IEP test. Rebecca's was done on the school site. It takes quite a while to do this testing and is needed before any "meetings" occur. I would certainly talk with her teacher on the phone, to set up some sort of checks and balances to keep Charlisa moving forward. You don't want her to fall behind, because at this age, and moving forward, it would certainly set her mind up for failure. If she already considers herself "dumb" you need to grab what ever tools you can to support her.

I actually homeschooled Rebecca through middle school. It had many positive results. She became more sure of herself and we could teach her in non traditional methods. For example, she and I went to Europe for three weeks, and studied many of the areas (Stonehedge and Pompeii) that her peers were studying in a textbook.

Tammy, my husband has never been able to go to the school meetings with me. However, it is not my intent to go in ready to "fight" the system. I want everyone to work with us, and I make my realistic expectations, and they make theirs. That is the most we can ask for. Plus, the goal to have learning be enjoyable is high on my list. I want her to learn "how" to learn. We are setting our children up for a lifetime of learning if they do find it fun and exciting.

Try to teach her that babysteps are necessary to move forward in most everything we do.

Good luck with your decisions

 

[stringbean]

I did speak with Charlisa's teacher on the phone, She is absolutely not the teacher I was getting comments on.

She highly praised Charlisa on her work and much more. When I told her about our concerns she definelty wanted to set a meeting with us with her and the school cousnelor she also during this conversation transferred me to talk with the school counselor and she also wanted the meeting, I told them about her ADHD (I would really like to know why I have to inform her teacher, school nurse, counselor every year that my child has ADHD, shouldn't this be in her school records?)
When we went in for the conference the vice principal was also involved, her teacher brought in many different papers of Charlisa's work that we had not seen. Before this meeting we had received her progress report for the first nine weeks and we were very surprised at the grades we saw, we were very happy to see these but they did not match the grades we were seeing on graded papers brought home, We were expecting to see a D in math and she has a 76, a high C. When we asked about this we were told that there was more that her graded was based on other than the graded papers we were seeing.
One thing that has always frustrated me is that as we were told by the Vice Principal, that for them to do anything about the possiblity of her having seizures we have to have a statement from her doc, stating that she has them, well when she was seen by a child neurologist she could not say she was having them but also could not say she wasn't having them. So where what do we do about this?
Charlisa is very creative she is now writing great poetry and her drawing is being highly praised, we were shown these at the conference and I wanted copies of them and her teacher sent this home with her.

Now, more confusion for us, we had to take Charlisa for a checkup, for her medacaid, and she failed the hearing test, which she has never passed one since they started checking it in head start when she was 3, she has been taken to a Ear, nose and throat doc and we were told that her hearing was fine it was due to her allergies and all the fluid that would be behind her ears during certain times of the year, (she passed the test at the doc's office). Her doc has put her on two different allergy meds and we are going to see if this helps, if not then back to and EN&T doc.
Now we dpon't know for sure if all the symtoms of the absence seizures are actually just problems with her hearing.

Will Keep all posted on what we find out.
Thanks for reading,
Tammy

 

[Kansas Educator]

Tammy,

I am a teacher too. I agree with the previous advice about putting things in writing and taking a tape recorder to the meeting. Parents have way more power than they realize in schools. If you can't get anywhere with the teacher and principal, I would contact your school district's special education coordinator. Maybe a supporting letter from your doctor would help too.

I always tells parents not to be afraid to be an advocate for their child even if it means being somewhat pushy. You can be polite but stick to your guns. If parents don't do what is best for their own child, who will?

 

[carpe diem]

Hi Tammy,

As a parent of a teen with epilepsy, I know how hard it is to navigate the school system to get what you know your child needs. Your situation is so familiar with my own experience in the past. Good suggestions from skillefer. I'm pretty sure that according to Federal law the school is mandated to perform a neuropsychological assessment, and if you're not satisfied with their assessment, they are supposed to pay for an indepent neuropsychological assessment. I don't know where you live, but go towards the big cities for neuropsychologists: the big city doctors see alot more children and can better compare your daughters situation to what is normal.

I've struggled through the school system when J. was in 1st grade, and his teacher was telling me he was lazy, not paying attention. By some grace of God, we got him evaluated and found that he was having absence seizures (verified by EEG), and he got a one to one aid in second grade to keep him on task. He has seizures almost daily, mental retardation as a result, on four different meds... but you know what? He makes the honor roll every semester and is outgoing and has a great little group of friends in his high school who struggle like him, but still make the best of everyday.

Regarding the hearing test, we had J. tested several times because he would "fail" it, but couldn't find anything wrong. I was convinced he did not have a hearing problem, but a comprehension problem, and times of spacing out due to seizures - I was right.

Before you go back to the ENT, make another appointment with the neurologist, ask for a 24 hour EEG, or if your hospital offers it, a 5 day EEG observation so you can pinpoint her staring spells, lack of attention, and see if these episodes are actually seizures.
Ask your childs teacher to make little notes of times when she notices your daughter not paying attention, or being spacy and if she is able to communicate during these moments.

My guess is that your daughter is having seizures and probably this mimics symptoms of ADHD. The treatments are different. If it is seizures, and these seizures are controlled, then maybe attention will improve.

God Speed.

Carpe Diem
Make the most of everyday

 

[Meetz1064]

You've gotten

some wonderful advice. I'm a special needs mom, too, though my son is autistic. Having worked in resource rooms for years as a substitute teacher though, I've learned a lot from the other end, too.

You're doing everything right. Skilly was right on the money of course, and so was Kansas. Carpe Diem's comments about the EEGs are perfect. While they may be an annoyance, especially to her, they will get you some good, solid answers--especially if you do the 5 day video EEG. Even a 24 to 48 might do the trick.

I would be curious though, and I would ask, if you haven't already, why you have to keep repeating yourself about all of the problems, especially the ADHD (has she actually been diagnosed with this & getting meds for it?). Why they don't keep that on file is beyond me.

Did you find out why you were only getting the bad papers back in the folder? And what the deal was with the communication with the other teacher?

Is there a particular reason that the principal is choosing not to get along with you? It seems that the Vice Principal is fairly easy to deal with, but he/she can be overridden by the other. If that principal continues to choose to behave like that, go to their boss.

Best of luck to you. Being your child's best advocate is NOT easy--I do remember well. I'm still doing it, and he's a freshman in college.

Take care.

Meetz
:rock:

 

[stilldancing_98]

If you can, Get in the school and spend a day in there volunteering. Log everything. I have been doing this for 15 years. Before my son was born and he has adhd with epilepsy.It took a long time,.But the district knows me now. The Dr. does play a roll in this. Because no matter what kinds of tests you have done you probably need to get an accurate neurophsyce test done from a phsycyatrist. Let Your Dr. give you a recomdation.When you log things and you are seeing how your child behaves at school you can get all your Dr.s working with the teachers and getting an IEP. This is for your child.Know one will advocate like you will.