Depending on where you are in the world, your kids are now back in school, some yesterday, some weeks ago. Now, although my autistic son is no longer in school, the beginning of the school year, September, was always when anxieties spiked for me, for him, and for all the parents of special needs children I knew. For an autistic child, going back for another year in a new grade doesn’t mean a new beginning, filled with excitement and possibilities; it means starting back at ground zero again, every year, with all the hard work from the previous year gone as if it never happened.
What do I mean by that? I’m referring to all the work you did as a parent, advocating for your child, getting his program to work for him, learning about his classes and curriculum, socializing with and educating his teacher and (if you’re lucky enough to have one) his support worker. For my son’s first six years of school, I was very fortunate, as was my son, to have an exclusive support worker trained by my consultant—who, by the way, I paid the bill for. What does a consultant do other than keep track of the extremely long wait list of parents trying to get services? She monitors and creates the child’s home program, makes note of the skills he needs to learn and the behaviors and issues that have to be addressed, and goes into the school and works with his teacher, the support workers, and the administration to get everyone on the same page and provided with the skills they need.
But what happens when someone new comes in and doesn’t want to play ball? This happened to me more times than I can count, creating a ton of sleepless nights. This is likely why now, when my daughter is finishing her senior year and is encountering her own issues after being assigned the wrong classes on day one, with the counsellor not answering her emails, it brought everything back for me. I remember what I had to deal with every year with educators who weren’t on the same page. I’ve realized September has become a trigger. There was something about this month that I never liked, and now I know why: It’s because come September, my full-time job became advocating, meeting, not backing down, even being called a bitch. Yes, really. One teacher called me that many years ago because I wouldn’t shut up and go away and let him shove my son in the corner because he wasn’t willing to speak with my consultant. That’s just something you never forget.
Are all teachers and administrators like this? Absolutely not. There were a few who were so amazing, who got what we were doing, who actually appreciated the fact that I was paying for a private consultant who brought with her the kinds of skills that aren’t provided in schools. Let me be clear: The public education system does not provide teachers and support workers with the kind of specialized training needed to work with our kids on their individualized programs. Not every child with autism or special needs is the same, and you can’t make a round peg fit into a square hole, even though that’s the only way the public school system is set up to work.
When you have a teacher or administrator on your side who gets what’s at stake and actually listens and pays attention, it really is like you’ve won the lottery. These types of teachers understand that what a consultant provides will result in a win-win, because the teacher gains much-needed skills and training she wouldn’t get from the public school system, and those skills will help her so much with other special needs kids who don’t have the same level of support.
Did my son have this? For the first six years of his schooling, as I’ve mentioned, which are pivotal years, he had an administrator who actually rolled out the red carpet, so to speak, for his consultant. He actually sat in on interviews for support workers so that my son wouldn’t get assigned someone who would never understand his needs or who would undo what he had been learning. Yes, he really was amazing, and we never had another administrator like him again. He set the bar so high and cared so deeply, and his actions spoke louder than words. If my son hadn’t had those first six years, he wouldn’t be where he is today. Yet as a parent with a special needs child, you’ll often encounter teachers or school staff who tell you that what they’re providing is good enough, and they outright refuse to work with your consultant, or they have a number of other students who take priority, or, as we experienced in a different school district when my consultant tried to work with my son’s social skills programmer, they say one thing and do the opposite.
Does that type of mindset undermine all the hard work your child and everyone who is part of your team have done? Absolutely. You find out the hard way that the school is actually working against you, which was what we discovered when my son started doing some odd things and suddenly gained some anxieties he had never had before. Some of those anxieties were so extreme that it has taken a long time to unlearn them, and we are still working on a few to this day. Learning these hard lessons comes at a cost, but giving up isn’t the answer. As with anything, if you want change, you have to advocate for it. You can’t back down. You have to speak up, become that squeaky wheel who won’t go quietly into the night. And, yes, you have to not bury your head in September anxieties. No matter how scared you are, you have to use your voice.
So what is my daughter doing now? Apparently, she has been watching me all these years, because she’s advocating for herself. She’s sent yet another email and has been clear on her expectations. She’s not about to be blown off. She’s keeping it in writing so she has a record, and she plans on going straight to the head administrator next. Will she settle because they want her to just take what they give her and not rock the boat? No, she won’t. She has a voice, and I’m so proud that she’s speaking up for herself.
Should it matter that we’re in the middle of a pandemic? No, absolutely not. One of the things my son’s autism consultant said quite pointedly is that many kids today, by the time they get into college or university, where they should be independent, unfortunately don’t know how to make simple decisions themselves. Mom and dad have done everything for them, fixed their problems, advocated for them, and never allowed them the independence to do things themselves. So I will watch, as I’m supposed to, from the sidelines. My daughter knows I’m ready to step in, but she has reminded me that she has a voice, and this is her senior year. Even though school is set up to work differently, she wants and needs specific classes to achieve the outcomes she has already outlined for herself.
She knows what she wants, and she also knows that advocating for herself is a skill she’s going to need out in the real world, because mom isn’t going to be able to fix her problems for her. She’s going to have to do it herself, and she’s going to encounter all kinds of power plays from those who see her age and gender as meaning she doesn’t matter. Does that kind of prejudice still exist? Yes, it very much does, both in our schools and out in our society, in the real world. My daughter has seen it happen to me. She’s seen the battles I’ve had to fight against those with closed minds. But she’s also seen those few who are so good at what they do that they set a shining example of why your career should only ever be something you truly, truly love.