I haven’t had the chance to write since last week, it was sort of draining, no matter what the outcome, and then I decompressed the same way a few million people did over the weekend, by binge-watching House of Cards. We had our big annual IEP for Charlie… and it was possibly one of the best days… ever!!
For those not entirely familiar with an IEP, it is another acronym for Individual Education Plan, a legal document with a legal meeting, to determine your specials needs child’s specific disabilities and needs and a plan to accommodate according to FAPE, yes another acronym, for the Free and Appropriate Public Education regulation from the US Department of Education. If that sounds daunting, it’s nothing compared to the general intimidation and legal ease thrown around at one of these meetings. There are lawyers and advocates that specialize in just this particular field of law and this particular event. There are psychologists that specialize in special needs parenting and thus in this meeting. There are endless books, websites, and blogs about this crazy IEP-thing.
The first of these annual IEP meetings, or just IEP’s, occurs when the child becomes eligible for public education and therefore the services that that may provide, usually at age three. Our first IEP was possibly one of the worst days of my life. I’ve written about it extensively before on my previous blog (Mommies in the Hood), but that did me no favors in this world where I find diplomacy does wonders in every situation, so I will spare you my traumatic details. Needless to say, the following IEP’s created stress, sleepless nights, tireless research, data collection, report collection, school visits, therapy visits, etc.. The worst part for me, and I can imagine for many parents, is the hour after hour of several so-called experts telling you the detailed ways in which your perfect precious child “cannot,” “will not,” or “shows no sign of” intent, progress, or will. And to top it off, they have to, by law, include the general education teacher or equivalent expert, to tell you in his or her highly educated opinion, how your child is different from a typical child and is just not going to be like other typical children. (*This is where you can picture daggers piercing into the parent’s heart, over and over again.) In accounting for all the laws that need to be addressed, I don’t feel anyone stopped to think that there is a sensitive parent at the end of that board room table who is crying, no, sobbing, on the inside, while showing a steel face listening to all the cold, hard truths.
It takes some time to get used to this process, to sort of prep yourself, “Remember, they aren’t speaking about Charlie as a kid, they have to address his needs.” We’ve now had one for Charlie each year, and a few or more in between; you can call an Emergency IEP if things are not going well, to change schools, to change therapists, to request a different service, etc.. Each one brings a little more experience, a little more knowledge, and an amazing ability to just stick it out as another one of those unpleasant things we parents have to do to get the job done. All of us Special Ed parents can look at each other at morning drop-off and with one word have complete understanding.
“Hey Caroline!” I say. “IEP.” She says. And with that one word I have absolute understanding of her pale face, stealy gaze, and determined walk that morning, or the exhaustion that I see her carry the next day.
Or my friend’s boy in the autism class next door who is not doing well; he hasn’t had enough help, he has a health issue that is being ignored. “IEP,” we tell her at pick-up. “Yup!” She declares!
We haven’t had too much luck at these IEP’s for the last six and a half years. A divorce and battling parents never help the situation. And finding the right mix of therapists and teachers is key, the advocates to perfect your goals and provide additional knowledge of schools; you need your “Dream Team!” Back in the beginning, I didn’t know anything about this except for my absolute hurt that my child wasn’t being seen as having potential. I felt like I was beating my head against a brick wall. I heard that I was called a parent in denial, “I’m sorry, honey, kids with autism will often never…” one autism teacher told me. (AAGGGGHHHHHH!!) One school psychologist hung up on me, she put in a report that I was a drinker and that Charlie may be the result of fetal alcohol syndrome. ARE YOU FRIKKIN’ KIDDING ME?! (Besides for my silly #oh-look-wine posts on Instagram, I’m really not a drinker! Never have been!) It has been a big challenge after even bigger challenge, and that doesn’t include the actual special-needs parenting or work we put in!
Now we have our “Dream Team.” I have to give them each credit!! (Don’t worry, I do that outside of this blog!) And I have learned something that I find can be a little unusual: you get more bees with honey than with vinegar. We don’t go to due process. We stay at that IEP until it is agreed on! By everyone! This started as a necessity, I didn’t have too many options at one point, but I truly believe it turned out for the better. I want every one of those experts to agree with my opinions and my belief in potential for Charlie. I don’t want to say, “You better agree to this on paper or else I’ll take you to court.” I understand that sometimes it is necessary and our legal system and laws make this an option, but I want to convince everyone to see Charlie through my eyes. I want them to see his potential as I do, to believe in him. I want them to understand that should he have the help he needs now, they will not be supporting him as an adult with even more severe needs. Don’t get me wrong, it’s not easy! It has taken me beating my head against a brick wall. We have stayed in IEP’s and adjourned for four days. But we get there!
And this last week, we really did get there! Instead of hours and hours of “Can’ts” and “Won’ts” and “Will nots,” we got “Goals met,” and “Progress made!” It was beautiful to listen to. We have a truly extraordinary teacher now for Charlie, she is tireless and gifted and persistent. We have an amazing BII and BID for Charlie, more acronyms for his behavioral aids, or assistants. As one person described progress, the other one enthusiastically said, “Yeah, and if we shape it this way, we can achieve this…” It was so exciting to watch these talented clinicians and teachers get as excited about Charlie’s potential as I do! I would have had tears in my eyes if it were not for the stealy emotionless gaze I perfect days leading up to each IEP at this point. Haha! But in all seriousness, it is the best feeling in the world to hear your child on the sprectrum is making progress!! I now have proof that the possibilities are limitless. Never listen to what you do not believe to be absolutely true, or what you believe to be true for your child.
My message to parents? #NEVERGIVEUP! #DoNotLoseFaith! Fight for your child’s services! Fight to make those involved understand the words “MY CHILD CAN…!” Be told you’re in denial, if that’s what it takes, because only you know your child inside and out, and if we don’t have faith, who will?!