Early in the school year, it became apparent that my son's teachers and maybe, possibly the school leadership team, did not think he was a good fit for their school. Mind you, I had done a ton of research about the school that would be the best fit for my kid, knowing his challenges but also, having just experienced the level of success he was capable of achieving when properly supported. I visited different schools, heard from different people, weighted the pros and cons of different schools, I really thought this through. In fact, it took me so long to decide that the elementary school called to ask where they should send my son's records. Somehow, things did not work out the way I had expected them to. I became increasingly worried about my kid and about whether his educational needs were being properly addressed by some of his teachers. By March, I knew we had a problem when the school leadership team told me they would be recommending retention. For this, they cited a new state law that requires all students, even the ones who learn differently because of their special needs, to meet specific criteria for promotion and there laid the hurdle. I was livid!!! I was literally livid!
My kid had spent the last 7 years at one school where, through advocacy and compromise, he was able to grow, to strive and learn. I imagined the transition to middle school would be hard, I fully expected new challenges but did not expect the new school to be this insensitive to a student's need, especially one who, being on the autism spectrum required more time and a different approach to adapt to a new environment.
So I did what I usually do when I don't think my kid is being treated fairly. I embarked on a fight with the school leadership. I reached out to state organizations, sought legal counsel, I fought! And this fight is kind of not over. I lost the first part of the fight. I filed a formal complaint and part of it was addressed. The other part is still pending and I'm not sure at this point whether I want to follow through.
I took my kid out of the school system he's been a part of for the last 8 years. I felt duped and misunderstood. I felt let down by the very people who claimed to be working for all students. I'm not sure who those students are but my kid sure did not benefit from their efforts.
Before that fight, before even starting middle school, my son had to go to Cincinnati Children's for one of his overnight, same-day surgery visits. He had developed some breathing irregularities and upon speaking to members of his medical team, I was told it was better that I bring him to them so I did. That's a part of our lives; that's the way things are; that's our normal. But it was not a planned trip and it happened right before school. A few weeks later, he had to follow-up with another surgery and this one was done out of town but in state. So yes, I was dealing with a lot even before the middle-school crisis had started.
Besides all of this, besides these truly intense and emotionally-draining events, I was also trying to complete my doctoral courses. This past summer, I took the last two classes for the doctoral program I've been enrolled in since 2014 and that too, was daunting. It was maybe one of the hardest balancing acts I've had to do in a long while and it was stressful, nowhere near as stressful as what I was dealing with for my son but stressful nonetheless. A little bit of good news came from that front though: I passed my last two classes with an A and can now focus on completing the dissertation and that in itself is pretty time-consuming.
No, I'm not singing the "woe is me" song but it's just been a lot this past year. A whole lot.
So how did this fight with my son's school end? Well, as I mentioned earlier, made a bold decision: I decided to take a break from the school system he was enrolled in and opted for something different. Yep. I pulled him out. I seriously considered homeschooling, I really did. And I'm pausing there a bit because I in fact don't really think homeschooling is the best choice for educating kids, not unless parents make a conscious effort to add a social component. I believe in teaching the whole child but I digress. I considered homeschooling but discarded the idea because it did not offer opportunities for social interactions. I'm not a stay-at-home mom and my husband is not a stay-at-home-dad although he does have more flexibility these days; but that can change anytime so couldn't count on him really. My next step was to start investigating other types of school. I remember sitting on the couch in the family room and praying to God "I just want a place that is nurturing, a place that will give me peace of mind" I whispered. At the time, I had nothing in mind. I had just left a very long meeting where I had indicated my intention to withdraw my son from the school and I was drained. I had a good cry after that meeting. I insisted on going to lunch with my family right after hoping it would lift my spirits but I still had a pounding headache by the time I got home. I think it was all the tension that I had kept in check throughout the day. Sometimes, it's good to just let it go and cry.
By then, I had already started looking at different places, had already started calling around to different schools and had started to get some hope of an alternative. I was scared, really scared that I was doing the wrong thing but my kid was really, really upset at the idea of having to repeat the grade. I tried to approach the topic from different angles during summer break. I told him about people we knew, other kids who would be going there in the fall, wondered out loud if it would be so bad to repeat and I did so knowing from the research that 6th grade retention was cited as the most traumatic event in a child's life after going blind and the death of a parent. That was actually one of the reasons I decided to fight this decision. Not only did I not believe it was fair to expect my autistic son to adapt to middle-school in record time when it is hard for all kids to do so, I did not want him to be marked by this. I did not know, could not know what he was really thinking most of the times so when he did express his fears and feelings towards the situation, I listened. There were also other little signs: I ran into someone who knew my son and had worked with him and she urged us, my husband and me, not to give up on him. There were also the many conversations I had with different experts whose opinion indicated that my son's needs were not properly addressed. But above all, it was because of my son, because of his feelings that I chose to leave the traditional school system. My kid is complicated. His story is not just one of autism. Maybe he needed something else, something that could not be found in the current environment he was in. Or maybe I was just tired and needed a break. I've been fighting for my kid since he started attending the traditional schools when he was 4 years old. He turned 13 in March. And this was an all-out fight. Maybe I needed to step back, regroup and clear my head. I'm not writing traditional school off. I'm not taking anything off the table but for now, while my son is dealing with the challenges of growing up and becoming a teenager, I'm willing to try something different.
And so, that's how it's been folks. It's been a grueling, crazy, rough ride this past year. My body reacted in a very dramatic way. In October, I noticed that just like that, one side of my hair was much shorter than the other, I mean, significantly shorter. I don't really make a big deal of it because so many people go through worst because of diseases ravaging their bodies. But yes, that was one obvious physical reaction. With all the upheavals, my health journey took a hit, too. I didn't stop. I don't intend to but, when you commit to healthier lifestyle and nutrition, you need time to focus and, as I just explained, time to focus on anything else but what was happening to my kid was scarce. I managed to keep up with moving until August. Then I injured my shoulder and had to take a break but little by little I'm getting active again. I kept up with my food journal and I'm glad I at least did that.
Whew! I think I've finally caught up with myself. I feel like I should be sobbing right now, just heaved a really deep, belly shaking sigh but no cry. Go figure!
And life goes on. We're dealing with other challenges in our lives just like many other families around us but we're still standing. Given the circumstances, I think it's a blessing. My son is at a new school, moved on to 7th grade where he's been doing surprising well. I'm keeping my fingers crossed. But to be clear, it was never about not repeating a grade; it was about preventing something that could have marked my son for the rest of his life. Maybe I'm being dramatic but I don't care. As I tried to explain to the powers that be: if after the first year of middle school, in the second or third year, I was told that my kid needed to repeat, that would have been OK. Because it wasn't 7th or 8th grade that was cited as the most traumatic event of a child's life after going blind or losing a parent, it was 6th grade. And given the poor transition and lack of support my kid got when he was in 6th grade... No, I did not want to risk it.
I'm his mom and I will always, always do my darnest best to protect him.
