"He has epilepsy, asthma, sensory processing disorder, a speech delay, and a fine motor tremor as well as an assortment of other difficulties that are sure to affect him during school."
This is one of the opening sentences in my email to my son's school that he'll be starting kindergarten at this fall. As I proofread the email before hitting send, and re-read this line all I could think was, "yep, that's ALL I'm dropping off at your door come fall. Just those things. Let it be known...."
Granted we've already been informing them of all that is him for the last year, since moving to our current location. He's had several screening's and evaluations. The system here feels its not necessary for him to have an IEP (Individualized Education Plan), regardless of the fact he's borderline every test and the tests are clearly catered to the best interest of the public school system, and of course tax-payers money. Not to get into politics or anything. They personally feel it is better to wait until a child has not mastered a skill that 90% of kids that age would have mastered and then add a year or two. Since about 50% of kids probably attained that skill by a year or so prior to the 90% criteria, by the time they even look into giving services, my child would be 2-3 years behind 50% of his peers and at least 1-2 years behind 90% of them. Sorry, that's not good enough for my child.
So we do private services, and they put him 1-2 years behind in several areas already. He's been going for nearly a year and after the re-evaluation they just completed...there's no end in sight yet. Again, different tests probably catered toward approving more kids so they can receive more money. However, I'd rather gamble with my money than my child's future, so he goes to private services. The school system also made it clear to me, within the same sentence as telling me he doesn't need special services that I should MOST DEFINITELY continue the special services they so conveniently don't have to pay for. So he doesn't "need" it...but definitely "do" it. I've been looking forward to those backward answers since the day we started this journey. FINALLY the time is here, and I'm almost as excited as I knew I wouldn't be.
As a recommendation by the individuals who evaluated my son, we should still complete a health care plan and make arrangements to meet with his specific school staff prior to the start of school. So here I am writing an email that really could be a novel or two. After moving, his new pediatrician's hand gestures describing the size of the package he received containing all of my son's medical records goes to show that we really could start a book series.
In a few days I'm sure I'll get a reply with a full list of things we need to complete over the next two months. Since it's the best we can get for him at this point, I intend to make them do every single one and more. If I had any more ammunition I'd be fighting for even more at this point, but since he's never been in a kindergarten classroom, I can't much say exactly what he's going to be like. Plus I have insurance companies to fight with and doctors appointments to attend. It would be terrific if he surprised us all, missed no school, had no sensory problems, no behavioral problems, and no seizures the whole year. That would be wonderful, but reality has shown me that's really not our life.
The anxiety has been steadily rising for at least a year leading up to his first day. The day I've seriously wondered about since diagnosis (and honestly probably before). There's been times I didn't know if we would all make it here together. Thankfully we have, but THIS is epilepsy. This constant on edge wondering about the next step while we're still waiting for all 3 steps before to be completed. Fighting for our son to make sure he's getting the best possible care in all areas. Informing every person he comes into contact with about his "novel", and then instantly evaluating their responses to judge whether or not they have a high enough "reading level" to handle it.
It is not easy dropping a semi full of baggage onto every person who has to care for him. It's definitely not fun seeing the faces and reactions many people have just when hearing the word epilepsy. Then as if that face wasn't enough, you should see the one when you describe how to administer a rectal rescue medication to a child having a seizure. And there's always the infamous, "Epilepsy....that's seizures...right?" Why yes, yes it is...it is definitely seizures AND so so SO much more.
Epilepsy is literally a pile, a heaping pile, of baggage we get to hand to every person who comes into contact with our child, and then all we can do is hope that the person receiving this baggage can not only handle it, but also look past it to see the amazing child beneath it all.