Last year, our sweet G-man started Kindergarten. What a big year for us! October of last year was also when we got our Tourette diagnosis.
Being the strong, advocating, proactive parents we were, we immediately met with G’s teacher, and the Developmental Specialist of the school. Although G wasn’t having any “trouble” per se in school, she urged us to go ahead and jump on the IEP process, getting a safety net in place for him should trouble arise. I thought this sounded like a fabulous plan, so I started jumping through the hoops of obtaining the necessities for the process. I obtained a letter of diagnosis from G’s diagnosing Neurologist and pranced back to school. PIECE of CAKE! I had read so many horror stories of the IEP process, about uncooperative school personnel and school districts and endless denials and appeals. This was going well and I was feeling good.
Then the trouble began.
My letter wasn’t adequate, said the Developmental Specialist. It only named his diagnosis, not the “issues” he had. But wait….. we just discussed that he hadn’t had any real trouble yet … (in Kindergarten, no trouble arose because his teacher allowed him to spend unlimited time sharpening the classroom pencils and sorting them, point down, with exactly 10 pencils in each of the 6 containers …. but that’s a WHOLE different post)….
I digress.
So I trek to a Child Psychologist, with whom I waited for about 4 weeks to get an appointment. G-man performed beautifully in his interview, earning himself a hefty diagnosis of Obsessive Compulsive Disorder, which often accompanies Tourette Syndrome. And I earned myself a hefty four page letter spelling out every single complication with school that G-man might EVER have until college. Into the school I marched, triumphant as ever. THIS was the ticket. It was a little harder than I originally thought, but we were on our way! The Developmental Specialist glanced over the letter, and VOILA! It was golden. So the next step is to hand it over to the principal to continue the process.
At this point, it’s Christmas break, so we had a bit of an interruption.
January ….
February ….
I never heard a peep back. SO, at the beginning of March I approached them again. It’s spring, we all have a fresh perspective. And we are still waiting on the principal to look it over. After three face to face visits in a three week period, I get my call from the principal. She will address it FIRST thing after spring break.
~~ big deep cleansing breath~~
And finally, the day comes. She calls. She leaves me a message. I return the call, only to hear that there is NO reason in the world to LABEL our G-man. He’s brilliant, he’s having NO trouble, there are NO COMPLAINTS from teachers, WHY would we want to put something in place that will follow him until he graduates high school, when this might NEVER even become an issue? Obsessive-Compulsive Disorder doesn’t even qualify for IEP coverage (skimming over that minor little TOURETTE diagnosis).
And at this point, we are in the last week of school, and I can clearly see now it’s a much larger uphill fight than I ever thought. So add me to the list of those people who the IEP process has failed, at least on the first attempt. Perhaps I could’ve been a stronger, in their face type of advocate from the beginning … but my child has to walk these halls for the next 5 years, as well as his two siblings right behind him. I have read ALL the legislation pertaining to IEP and Tourettes, and exactly how and why it qualifies.
So now, we have a brand new school year beginning. Where do I go from here?
Deciding my next move,
Cape Wearing Mommy
I so feel your pain. My guy had one for two years, then it got removed (by school’s choice not mine) right before Kindergarten started. Oh he was doing so rosey in 4K… I wonder why? 4K is quite different than full-day kindergarten. Plus, how he reacts to situations is very different in that environment compared to full day school and also compared to 4 or 5 or 6 years of age. Alot of change happens in the body and brain between those ages. Unfortunately for us, we had to watch his school experience practically fall apart before we were able to get the help/support back. So much for proactivity. Well when it fell apart the “fight” became easy. It was staring everyone in the eyes. As you said, our children have to continue to walk those halls for years to come including siblings who will follow so we need to be tactful in our ways of advocating. One thing that I never relied on until this past year because I truly believed I was the number one expert on Owen and I’m his best advocate so there was no need for a parent coordinator or child advocate (outside source). Well when we felt our battle was too deep we called one in and I am so glad we did. Do not discredit the value (in a good advocate, find one by word-of-mouth referral) in one of these advocates just b/c you are your child’s number one expert. They are still an excellent resource. And do your research which it sounds like you do… make calls and know all your rights. Knowing the terminology helps too. The hardest thing is that as you and I both experienced… it’s hard to get help set up and at the ready when issues aren’t going on right now. Another key piece is spending some time in your child’s classroom at varying times of the day so you can see them amongst their typically developing peers. That was incredibly helpful for me. Good luck!
It is not failure – It is a stepping stone. Each time you get to learn how to use these times to show others that you know your son best (in a godly manner). Make sure you keep records of everything and every meeting. It is just a sad process that the education system feels they have a better handle on than we as parent do. In our area the whole IEP process goes through the county’s social services. It is not up to the principal we never even talked to him about our son’s IEP. And if the school didn’t follow the IEP the county got involved. Check further into the whole system. I hate to say this but even if you get the IEP it is next to impossible to get every teacher to even read it let alone follow it. We brought our son home to homeschool because sadly I am a very squeaky wheel and wound up burning some bridges. Some teachers were just impossible to work with. Remember This is a stepping stone you will use to build up to your son having an awesome education.
Nothing is easy when we advocate for our children. My daughter is lucky that her mom is a school social worker and getting her doctorate in psychology. I can navigate the system a bit easier and be more direct (even demanding at times) when asking for things my daughter needs. But ahhh, at times it is just difficult for everyone. My daughter didn’t receive a PDD diagnosis until she was in 5th grade. Up until then we could only narrow down ADHD. When I received the neuropsychological evaluation and there was a PDD diagnosis given, the social worker at the school said, that she didn’t need the label as the services would not change anyways. I disagreed! I pointed out that the social deficit gap is getting wider and it will continue as her peers continue to mature at a faster pace. I made chronic phone calls to the principal for the bullying she was enduring. I was ticked that I had to point out the problems and even create the solutions some times. After a year of fighting the system, educating the staff to the reality of who she was and her needs, the end of the year transition between elementary and Jr. High was tense. But sure enough, the social worker went to bat for us and insisted that the OT be reinstated (which had been discontinued during 4th grade) and she receive services for sensory integration. Finally!
I say I’m sorry to everyone that has to fight this uphill battle. It’s annoying, stressful, and overwhelming at times. More than anything, it just doesn’t seem fair. But to all those parents out there, do not give up. It might take a year to obtain what you believe to be fair. God will walk by us during the battles and he will provide what is needed for our children. Hang In There. The school systems are a broken system, but they are the only system we have. They do the best they can at times and at other times they are clueless. State funding in Illinois has decreased drastically and that impacts the quantity and quality of services. It’s a rat maze to get through, but we will do it with Him by our side.
Good Luck To All This School Year.