I wanted to take a few minutes of your time to encourage all of you to begin your foundation to establish yourself as an extremely strong advocate for your child.  I have read several posts in regards to this concern.

Our son Max who is now 15 years and was diagnosed with KLS in December of 2007 and has 5 epsisodes.  My husband and I had to be very proactive with all the physicians we encountered and like many of you, went through a parade of doctors.

With that being said….I wanted to direct you to some steps you may take to get quicker actions in regards to your child’s IEP or 504.  You, of course, need to get a letter from your physician documenting your child has KLS and a copy from the web site that provides your rights and explains what KLS is.  Your next step is to check and see what child advocates (if any) are available in your county…we have them here in Florida…and you can get the number from the district office.

If you do not have advocates then you need to Google Wrights Law…which is a wealth of knowledge of Special Education Law and Advocacy.  Compile your information and request a Child Study meeting (that’s what it is called in Florida)..bring your advocate with you if you have one.  Make copies of your medical documentation etc. and provide copies for all present in meeting.  Present yourself as a highly organized parent.  At the completion of the first meeting you need to begin your paper trail and email the appropriate person to go over the details of the meeting and what changes you desire.  You continue to email after each phone call, meeting, conversation in a school hallway etc. 

Do not give up and stay consistent and focused to your objectives. I tell parent groups all the time that you are your child’s lifeline to achieve their best educational
opportunities.  It does not matter if they roll their eyes at you each time you enter a meeting ...you must keep your hand to the plow.  It is federal mandated law
and it is your legal right to fight in the most constructive way possible.

If you continue and are not satifsfied take your paper trail of emails and schedule a meeting with your school board/and or superintendent.  If necessary seek legal counsel.  If they continue to dig in (which does happen) your final step is to go to the media.  That is your last resort…and I have seen major turn arounds after media coverage.

I have been teaching for 28 years and presently am teaching in my sons high school.  Max has had an IEP since second grade…he is dyslexic like me and I have had to fight for his rights for a very long time.  This is a new fork in his journey and I have already begun to prepare…just in case…

I hope this helps some of you…the Wrights Law web site is an incredible help with lots of links and excellent advice.

Remember not to give up…be strong and go forth!!!!!

Gail in Florida

Thank you for the info.  I didn’t know about the Wrights Law and will definitely check it out as soon as I am done posting.

I have had a heck of a tome with my son’s school from day one.  I have become one of “those” parents in their eyes.  Do I care?  No.  I fight tooth and nail for my son and it hasn’t been easy at all.  They’ve done some questionable things more than once and there are days where I would love to pull him out and homeschool him.  Unfortunately, he isn’t too keen on that idea as he loves the social aspect and he has a lot of friends.

We’ve done the IEP and 504 and those have been proven useless at our school.  Sad thing is, this is not an isolated case as I know other parents who have either / or in place which are nto followed.  I’ve talked to the super on more than one occasion and he’s just a step above useless.  I’ve had the social worker from Chlildren’s Hospital step in and offer to help me with the school.  I gave him the OK and he started making calls.  I finally got a call back and he informed me that in the 20 or so years he’s been doing stuff like that, he has always got what he’s wanted and never failed.  He admitted to failing with my son’s school and told me “no wonder you want to bang your head against a brick wall when you talk to them!  I was banging with you!”

I will go check things out right now.  I’ve got about 6 more weeks until school starts up again to prepare for another year at the wonderful insitution!

My daughter’s biggest issue with school was the unavoidable plain fact that she missed so much of it!  Montessoris are great for that - public schools not so great. For high school she went to a small private non-profit school for high IQ kids but with special learning requirements (like LD which she also has). Even there, keeping up with course material was stressful. It is hard to do algebra when you miss 4 weeks here and there and repeatedly miss several day chunks.

It is really really tough.

Thank you so much for your post.

My daughter’s school has been wonderful. We got a 504 in place soon after we got a diagnosis.  The teachers have been very understanding and have allowed her extra time to make up assignments and tests. The biggest problem is the missed instruction.  She was in pre-calculus this last semester and was scheduled to take calculus this semester.  She ended up dropping it because it was too hard to keep up when she missed so much instructional time.