I will start off by saying that my son’s school is absolutely HORRIBLE when it comes to medical issues.  As a school, it’s great.  Throw in medical conditions and they are about as dumb as a bag of rocks.

Tyler is in second grade and has other issues besides KLS, with the main one being seizures.  To his school, it’s all a big joke that is not taken seriously whatsoever.  He’s had seizures at school where his teachers will tell him to “get off the floor and stop screwing around.”  Yeah, because faking constant seizures is always on a kid’s mind.  They say he’s “lazy” because he falls asleep in class and they can not wake him up.  We’ve done a half hearted IEP since kinder and that’s beena nightmare.  The school is always requesting access to his medical records yet do nothing with them.  They don’t offer any services to him because “he’s not in need of them acedemically.”  I’ve restricted access to his records, per his neurologist and pediatrician, and they said they would be happy to give them specific papers with a diagnosis but they have no business with open records.  If he were receiving special services it would be another story but he’s not.  His school isn’t happy with that and once a month request another diagnosis in writing.  Apparently, “seizures and sleepyness can cure itself!” ...according to the wonderful school. 

The school does not follow the IEP they set.  We’ve thought about the 504 plan but again, the school won’t set anything up.  While he doesn’t need the services, there are certain things they won’t seem to budge on.  If he falls asleep or doesn’t make it to school because of an episode, he is not allowed to make up the work They dock him points for missing the classwork he sleeps through.  They try to wake him up, and not in a kind way, which is a big no no because he is more prone to seizures in the “falling asleep” and “waking up” stage.  The neurologist had to make phones calls and actually wrote a prescription for a nap stating Tyler is to be left alone, not bothered and not penalized if he falls asleep as it is not something Ty can control.  He had to write another prescription for him to get his homework earlier so he had more time to complete it over the weekend when he is more awake at home.  I mean seriously, it’s come to the point where we need prescriptions for homework and a nap?  They also contacted the school and reminded them that these were actual prescriptions and he expected them to be followed.  So far, so good! 

We have our appointment to see Dr. Mignot July 9th.  By then, Ty will be out for the summer and getting ready to start 3rd grade and we will be more prepared with this KLS stuff.  We’re total newbies to it. 

I guess what I am eventually leading to is….How do you all deal with your child’s school when it comes to the KLS?  I’ve attempted to explain it to them and they’re the type of people that if they’ve never heard of it, it does not exist.  Again, it’s just a great big joke I am playing on them.  I’ve heard so many times, “You just need to put him to bed earlier.”  He’s in bed by 230-300 in the afternoon.  He gets off the bus at 215.  Can get him in bed any earlier now, can I?  How do I make them understand that this will not cure itself? Do I get this in his IEP?  Do I need a 504 instead?  Do I just continue bringing in prescriptions for things that he needs?  That seems to be the only thing that works.

And one more thing, please!  What will our first appointment with Dr. Mignot be like?  I’ve got a huge stack of medical records from Ty’s doctors, including MRIs and CTs.  Do I need to bring anything?  Do I need anything special?  Anyone have an appointment the same day and want to do lunch?

Thanks in advance!