When we finally got an appointment with our first autism specialist, Eve was just shy of her fourth birthday. For over six months I had known what was wrong, but I had to wait forever to meet with a physician who could help. It was torture.
Every day that I couldn’t help her felt like an eternity. It was one of the first times, but definitely not the last, that I felt mistreated and abandoned by the medical community. No child on the planet with any other life-threatening diagnosis would be forced to wait six to eight months just to see a doctor. My child had suffered a brain injury, yet you would have thought it was a mosquito bite.
Each day that passed I worried that was the day we could have saved her. I kept hearing about this window, and that if you could start all of your therapies by their third or fourth birthday, you were in the best shape for being able to recover. We were getting started almost exactly on her fourth birthday. It felt like we were too late and that our window was about to be shut.
Thankfully, it was not.
As I’ve written about many times, the improvement by treating her medical conditions was immediate and profound. For example, in November of 2004 she entered an intensive all-day preschool. Testing showed that she was at best in the lowest 20th percentile in all skills across the board for kids her age. She was also barely verbal. Within one year of starting treatment, however, she was in the 85th percentile and released from the special needs program.
We thought we had made it out. We really, really did. I used the word “recovered” because as far as anyone could tell, she was. She attended kindergarten with no aid. For those 18 months between preschool and first grade, I believed autism was a part of my life I would someday be able to put behind me.
And then first grade came. By the end of first quarter, it was becoming apparent she couldn’t keep focused for the full day. Her teacher recommended she be pulled out for small group reading classes. We agreed, and she continued with her speech and occupational therapy sessions. They also added a social skills session to the mix. As much as I hated to admit it, I felt us going backwards.
Then second grade came. By then, the academic differences were becoming very apparent. Of all of the grades that we have gone through, that one was the worst. That was where kids started moving from what, when, where questions to why and how. The math got harder. Everything moved faster. Still, we continued with the same interventions we had for first grade, no aid and a few speech and OT services.
Third and fourth grade seemed to be better. I began to breathe again. Socially, she had made some friends. For her 9th birthday, we had over 8 little girls at our home for a sleepover. She played with them the whole time. They played with her. They liked her. She joined Girl Scouts and even got invited to other girls’ parties. I could handle the academic problems as long as she was being included. I still felt good.
But then fifth and sixth grade came. Although she was still active in various clubs and activities, she was moved out of the regular classroom setting and spent most of her day with the other kids like her that struggled socially and academically. She still got services, and it was still a pretty big group of kids, so it didn’t seem too bad.
But we could tell that she was falling further and further behind, and that something bad was happening. It was in our transition to the Junior High that the director of special services told me she’d have a “good life”. (I wrote about that here.) It was a patronizing way of letting me know not to get my hopes up too high.
In that moment I knew that they had given up on her. I was proven right when they asked if she would no longer take the standardized tests. They gave some practical reason that sounded nice, but as a teacher, I knew they just didn’t want her bringing the scores down. Worse, once they were off the hook for her score, they could just pat her on the head and pass her through the system.
On top of that, her best friend...a sweet, typical girl that she had made good friends with in fifth grade and would call on the phone and make plans with and have sleepovers with and more...moved away. The one friendship that hadn’t required my involvement or a class or a club to maintain was gone.
I felt like everything was slipping away, like life was playing some cruel joke on us...where she was “awake” for a few years and then being brought back into the abyss. This kid went from almost 100% recovered within a year of biomed, to somewhere back in between the two worlds within five years. (Someone told me there’s a movie about that very thing called Awakenings. I’m intrigued, but I think it may be too painful to watch.)
I felt panicked. All of our hard work was disappearing right before our eyes. The gap was getting bigger across the board between her and her peers. By Junior High, they were recommending a shared aid between her and another child so she could make her way around the building. And besides elective courses and P.E., she was no longer going to be with neurotypical kids.
Worse, she was now going to be the only girl. There had only been three of them from the beginning. Her best friend had moved. The other no longer needed academic support. It was just her from now on, and it has been ever since.
Last year everything culminated in perhaps the worst six months of my life. The guilt over watching Eve basically regress in the few years prior was eating me from the inside out. I had thought our journey’s trajectory was one that went only up and up. I had no idea it would shoot like a rocket out of a launcher, but then slowly start falling back to earth. That hadn’t been part of the plan. By last July, I was depressed, distraught, overwhelmed, exhausted, and guilt ridden.
How could this have happened? What did we do wrong?
I went back over everything in the last five years. From age 8 to 13, we went backwards. I racked my brain for answers.
Maybe we should have stuck to the diet more. Maybe we should have kept up with all of the supplements. Maybe we needed more therapy. Maybe we got too comfortable and were naive to think we could ever have a “normal” life.
No matter what the possibility, the blame always landed on me. I was the reason she regressed, not only the first time, but the second. It was my fault. And it was once again my responsibility to make it better.
That’s what the voice in my head told me every night. That’s what the pain in my heart ached inside me every day. And the window...that damn window that panicked me so badly ten years ago when this all started...well, it’s all I could envision now. It had not only closed, but it had been locked tightly and sealed with caulk and plastic wrap.
Time was up. We blew it. Whatever progress we had made was limited. There was nothing we could do. I surrendered to our new reality...for about a few weeks.
And then the real me picked her head up from the pillow one night and shook it side to side as if to wake myself up. What was I doing? I had always resisted anyone dictating terms to me that I didn’t agree to. Why would I let anyone do that now?
Screw the window! Screw the guilt! Screw it all, I thought determined in a voice I hadn't heard of my own in a while.
I’m opening that damn window back up. I’ll decide if when, where, why and how that thing ever shuts!
I went back to bed with a newfound sense of comfort and reality.
I started with our chiropractor. We got updated reports and started intense therapy for a few months. There we discovered the onset of some pretty bad scoliosis that needs to be treated surgically this summer. It is another blow, but one that we will face head on. And as much as I’m not looking forward to her having back surgery, I am grateful that we can fix it.
(People think I’m a little crazy when I seem fine with it as I tell them what needs to happen. They don’t understand that it’s not that I am glad she has to have back surgery or that I’m not taking it seriously. I’m devastated for her. It’s just that they have no idea how good it feels to know you can actually fix something wrong with your child...and that you’ll have help, sympathy, insurance, and so much more along the way. This feels like a sprained ankle compared to autism, and I don’t mean that disrespectfully.)
The next thing to tackle was her IEP. We are transitioning to high school next year, and I’ll be damned if I’m going to let them treat her like someone to just get through the system. I have set all new goals for her, and we have a new plan in place for her academic support moving forward.
We’re also back into our biomed. It was a mistake to think we could ever truly leave it behind. I know that now. For us, it will be a lifetime of maintenance. And if I have to start making social plans for her again, then I will. The bottom line is, I will continue to do whatever it takes to give this child the best chance at life possible.
It’s been a ride I would have definitely rather never been on, but to deny that I haven’t learned some powerful, life-changing lessons would be wrong. Like this one, perhaps the most important one of all:
The window is never truly closed if you don’t want it to be. In fact, you can pick up a rock, put your fist through it, or even kick the damn thing to shatter it if necessary. It may be messy. It may be painful. You can definitely get hurt along the way and probably will.
But as I’ve learned through this experience, that’s okay...because as it turns out with all difficulties we face in life, it’s never been about whether or not the window is open or closed for you anyway.
It’s about how far you’ll go to break it open if you have to.