Monday, April 9, 2012

Seven lessons for year eight

Tomorrow is my son's 8th annual IEP meeting. I've been at this special ed thing since he was four, and here we are, in 6th grade, on the precipice of adolescence, with lockers and pimples and raging hormones. While I've learned so much over the course of these years, both about the specific issues that we deal with at home and at school and about the "system" of educating and medically treating special needs kids, I still spend this IEP-eve with a sense of dread and anxiety.
In our school district, 6th grade is gloriously still in elementary school, so next year we make the move to the frightening world of junior high. This year's IEP is complicated by the fact that not only are we writing a document that needs to be upheld by an entirely new team at an entirely new school in an entirely new environment, but we are moving this summer to a new county and a new school district. We don't know yet where he'll be going to school. He's mostly mainstreamed now, which has not always been the case. He'll be heading into the cruel world of middle school with some academic accommodations and a general need for someone to check in with... Other than that, he's actually ready for middle school. This is scary. He will have a locker and will be trusted to move from class to class during bustling passing periods. I know he can do these things, but I am so worried for him. The process of choosing a school is consuming me. I may write about that next month, we'll have to see.
Today, however, as a meditation for myself as much as anything, I want to go through the past seven IEP's, and the biggest lessons I learned from each. This is an attempt to integrate and build my confidence: I know what I'm doing here, but every year there seems to be a new challenge and a new problem and a new set of circumstances that shocks you in to a new reality.

Year one, lesson one: Preschool
Just because a school district determines that your child doesn't qualify for a specific service, it doesn't mean that you shouldn't look into pursuing that service outside of the school district.
This is one of my major regrets. With hindsight, my son was the very definition of sensory integration issues in preschool. He orbited the classroom, unable to stay still for circle time. He hid under desks during loud activities. His fight or flight instincts leaned aggressively towards flight whenever things got overwhelming. He was tested for sensory issues in that first IEP, and was deemed to not have significant-enough issues to qualify for school-based services.
I know now that this was bull. The questionnaire for sensory issues breaks them down into several categories, and I was told that he didn't qualify because he didn't score badly enough in all of the categories. He did score on the extreme end in three of the five, but the school team told me this was not enough to qualify him for services. This may have actually been true, this may have been their criteria for pre-school intervention. When I heard this, I heard, falsely, "This is not the problem, then." I crossed it off of my mental list. What I should have heard was, "You child is scoring with a definite difference in a number of categories on this questionnaire." He had sensory issues. He HAS sensory issues. I don't know if our experience is normal, but he's never really received adequate interventions in the schools for sensory issues. My desire to disqualify diagnoses (and I very competently kept my head in the sand, buried deep in denial for another year or so) kept us from seeking the help of an occupational therapist for the next three years. Once there, the work they were able to do CHANGED his life and mine forever. He most definitely needed OT, and private OT at that, OT in a gym with someone who could work with him one on one. The school would never be able to provide that. I wish I'd realized then how much work we'd have to do outside of what the school could provide.

Year two, lesson two: Kindergarten
These people are not your friends.
My parents were both teachers. I grew up with them talking shop at the dinner table, about difficult parents, about newly imposed rules and standards, about the long hours on their feet with bathroom breaks few and far between, about how hard it was to create environments of learning when parents didn't support their efforts. I wanted so badly to let the teachers know that I supported them, and I still do at every opportunity. Teachers have a tough job, one that I know I could not do myself. I really wanted them to like me, and I wanted them to know I knew their plight. I was overly accommodating in that first year. The Kindergarten IEP was absolutely toothless. They got away with a lot of, "I don't have time to communicate with you, you'll just have to live with that." I did it because I wanted them to understand that I understood. Silly me. My son left kindergarten having spent very little of the school year doing much in the realms of academics, but more importantly, he didn't learn how to go to school. The path of least resistance got us through Kindergarten, but it did not yield anything in lasting strategies or helpful behavioral interventions. This set him up for a complete faceplant in first grade. This brings us to...

Year three, lesson three: First Grade
An ounce of prevention beats a pound of cure, especially when that pound of cure involves hospitalization and IEP violations and antipsychotic drugs.
This is the only kind of lesson that can be learned with hindsight, and years of distance. My son's sensory issues and social skills, left untreated, led to the worst years of our lives. First grade brought a new diagnosis: bipolar disorder. We had largely extinguished the "flight" response from my son's repertoire, but his sensory issues and anxiety didn't extinguish his adrenal response to over-stimulation. As a result, instead of "flight," we got "fight." He began to act out and hurt himself. He was, in the words of his first grade teacher, ineducable. With the diagnosis of bipolar disorder came the assumption that medication would be the only thing that worked. We began a process of changing and adjusting these antipsychotics that led us into a tailspin of behaviors, weight gain and general hell. I am ultimately responsible for letting these things happen. I gave my son the medications, I listened to doctors that told me things I wasn't sure were true. The medications and the rapidity of changes to these medications led to a complete disintegration of our lives. My son was hospitalized for ten days that year, moved schools four times, including attending a hospital-based school for an unprecedented (in that the insurance company paid for it) 4 month stay. I used to be very bitter at the school for the events of that first grade year, but now I look at it and wonder why no one, including me, hadn't seen the writing on the wall for the previous two and done more to prevent it. My regret lies in not acting soon enough. My inaction led to my son become a drugged, ferile child.

Year four, lesson four: Second grade
Stop the insanity!
If first grade was our worst year, second grade was the hardest. My son was saddled with a lifelong mental disorder that prior to his diagnosis I didn't know children could have... Conveniently, the psychiatrists that were touting pediatric bipolar swore that it was the same as the adult version, even though the diagnostic criteria didn't match up. Basically, children who were aggressive and irritable were given the diagnosis without having to meet the criteria of periods of mania followed by periods of depression. My son never had periods of either, truly. Again, hindsight is 20/20. But in his second grade year, as he was taught in a self-contained school for children with severe behavioral issues, it became very clear to me that the medicines that were supposed to be helping him were actually harming him. He gained 50 pounds in a year. 50. He was only 6 and he weighed 110 pounds. Before the meds he was a little bean pole. A blood profile I insisted his psychiatrist order showed high cholesterol and the beginnings of diabetes.
The more I researched the side effects of the medications he took, the more I realized that his behaviors, too, could be caused by the medications as much as by the disorder I increasingly suspected he didn't have. I decided to pull the reins back and take him off the medications. This took more than a year, and I had virtually no support from professionals in this decision. The school was furious with me, as each down-titration of the medications cause a surge in bad behavior. The doctor did as I asked, prescribing lower and lower doses but warned me about the dangers of unmedicated bipolar disorder. My family and friends were the only people who saw what I saw: my beautiful son, blunted by drugs, flailing in the wrong environment, struggling. They alone supported me, and that was enough. I knew I was doing the right thing. I knew I was right. I fought hard that year, and I held my ground.

Year five, lesson five: Third grade
Hard work pays off.
By the end of third grade, my son was off of antipsychotics and had been reevaluated and found to have not bipolar disorder but alphabet soup: ADHD, PDD-NOS (which turned into Asperger Syndrome shortly thereafter). With the autism diagnosis, came explanations for the difficulties that my son had had since birth; the sensory sensitivities, the inability to understand social cues to sit or to talk at the right times. My fight with the self-contained school remained hard fought until I finally got all parties to agree he needed to be moved to a neighborhood school with behavioral support, and he was able to attend and learn and stay safe. He was still challenged in significant ways but we were finally on the right track.

Year six, lesson six: Fourth grade
Sometimes the wind's at your back.
The most amazing thing happened in fourth grade. My son had a great team, had appropriate interventions and support. Guess what? His progress during fourth grade was amazing. He still had his good days and bad days, but the understanding between the team is that we'd all work together to help him succeed. This was also the year that he started private social skills group. Between the private therapy and the public school, the future looked bright. I finally got to experience what happened when an IEP team worked as a team. It was glorious. Enjoy this, if you are currently experiencing this. If you are not, know that this can happen.

Year seven, lesson seven: Fifth grade
Just because they have a disability doesn't mean you shouldn't challenge them.
My son left fourth grade spending less than a quarter of his time in general ed classrooms. With middle school looming, and what I am sure was a difficult schedule for the special ed staff to logistically work out, I was informed at the beginning of fifth grade that he would be (quite suddenly, I thought) fully mainstreamed (with push in support). I was appalled. They were setting him up to fail! It hadn't been too long ago that he was regularly throwing chairs at his teachers, and they were just going to throw him in to the lions den? The trust that we'd built in the awesome fourth grade was not lost on me though, and I didn't feel like this was the hill to die on before they got to test their hypothesis that he'd be "just fine" in gen ed fifth grade. I was sure they'd back track upon his first tantrum... But that tantrum never came. The year wasn't without challenges, and he still definitely needed a lot of support, but he left fifth grade spending all day in gen ed, with pull out time with therapists. This was not a move I would have done on my own. Somehow the team knew it was the right time to push him just hard enough, and I let them.

Our narrative has gotten sunnier and sunnier as time has gone on. My son constantly amazes me with what he can accomplish, especially when properly supported. I've been burned and I've been pleasantly surprised by schools during this process. I have learned tons. I know my rights, I know more about psychiatric drugs than I ever thought I would.
Sixth grade was no picnic. Our awesome team further devolved and my son's teacher might have been the second coming of the Wicked Witch of the West. He perseveres, however. He's doing really well. I have no idea what to expect as we move in to middle school. I can only take stock of where we've been, what he needs, and what it takes to continue helping him succeed. If this post teaches me anything, it's that I have hard time seeing the forest for the trees until I get them behind me. So, who knows what the me of three years from now will say about the me today.
I get the feeling that we're on the cusp of a period that is going to require more effort from him for success. He's a great kid. He can do it... What these seven lessons teach me though, is that while we aren't out of the woods, he is resilient, I believe in him, and progress can be made in even the darkest times.
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Molly is a mom, erstwhile blogger, current insurance professional, and MS in Occupational Therapy student living in Colorado.


  1. We are a few years behind you, so it's lovely to read about your journey.
    Thank you for the window!

  2. Loved this. And your quote - "I knew I was doing the right thing. I knew I was right." Sometimes you just have to go with your gut. Good luck with middle school. It sounds like he is really on the right track.

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