I’m going to share with you the story of how I lost a battle I never thought someone like me could lose, and how it almost ruined me in the process. It’s hard to share because I’m still living the fall-out, and the experience has left me very fragile, but I’m hoping that sharing this will help me move past it.
I’d heard many stories from friends about schools discriminating against their disabled children, and the consequences for their child, including the disruptive (and expensive) experience of changing schools. I thought – through some magical, naïve thinking – that this wouldn’t happen to me. How could it, I thought: I have a law degree, so I know my rights and how to fight for them; I was on the board of my children’s school, so I had relationships and insights that was meant to make it easier to approach and deal with these matters, I was in a position that even gave me some input on how the school should deal with children who have special needs; I was a strong woman, a dedicated mother, a great communicator. How could I fail.
None of that made a damn bit of difference at the end of the day though. If a school – and more specifically, a principal – doesn’t want your kids at that school, you will find yourself in endless fights, and eventually facing that final decision: keep fighting – with all the hardships and exhaustion that brings – or leave to find another school – with all the exhaustion and hardship that brings too. Either way, you lose, your children suffer, and you might come out of the experience a shadow of who you were when it all began.
It all began when my sons’ school got a new principal at the end of last year. Never doubt the power and influence that a single person can have on an entire school culture; understanding this point was what would help me eventually choose a better replacement school for my boys, but we’ll get to that part of the tale in another post.
The school’s new principal decided she’d take-over the over-sight for special needs provision in the school. This didn’t worry me at all to begin with; she spoke the language of meaningful inclusion, I thought this could be what the school needed to become excellent and iconic in its treatment of their special students – integrating them as true equals within the school in every way. But instead of becoming a gate-way to better communication and better use of special education resources within the school, she became a barrier; it was like someone had slammed the door in my face and no matter what I did, no matter how hard I struggled to re-open the gate, it was locked tight. I went from feeling wanted and appreciated within the school for the insights I could provide for helping families like mine and our special kids, to feeling like I was distinctly unwanted, a nuisance, a pestering precense they wanted to make go away.
At first I thought maybe that was just me; maybe they didn’t really feel that way towards me at all, maybe I was misreading the situation. But matters went from bad to worse in a very short amount of time. I watched my older son’s supports lessen, and information on those supports and why they were lessening was kept from me – like some sort of secret I no longer had any right to access. When I’d ask for a meeting to discuss his supports, I’d get no reply. When I followed up another week later politely seeking a response to my original email, I was rudely and aggressively told off for doing so; even though I was asking about my older son’s supports, I was told that my younger son had heaps of resources spent on him and that the staff was spending a lot of time having to deal with me. Me. Me who couldn’t get any answers or help; me who was asking about the older son but was being attacked about my younger one as if that was a relevant response. Me, who spent hours every week for the past two years contributing my own free time (what little of it there ever is) to helping run the school as a board member. I was now categorised as a nuisance.
At one stage I’d brought up the idea of whether my older son might be suited to a different classroom because communication and supports were not going well in his current classroom, and that possibility was abruptly shot down too – I was told he was in the right room for him. My views as his mother, seemed worth nothing. I felt like I was being treated as an outsider daring to make enquiries about someone I had no relationship with, rather than as a mother seeking information about her own son.
Still, things got so much worse.
Finally a meeting was set up to discuss what was going on with my youngest son, who was a new entrant at the school. He was only being allowed to stay at school for 2.5 hours each day. He was not enjoying school, he constantly tried to escape a classroom he expressly found boring. He’d get distressed when it was time to go to school, and when he’d get home after his half-days at school he would cling to me like never before. He’d become quite anxious, unhappy, and insecure. School – or rather, this school – was making him upset, and teaching him nothing (except to hate school). In fact, he hated it so much he once ran all the way home during school time, at a time when he was explicitly meant to be watched by a teacher aide. He crossed a busy road (pure luck he wasn’t hit by a truck) to get home to me. The school’s response? To perhaps make the classroom more enjoyable or engaging for him, or to close the doors of the classroom so he’d stop running out of class, or to discuss options with me and seek my insight or help? Nope. Their response – specifically the principal’s response – was to openly say in front of others at this meeting that my son was not going to be allowed to stay at school unless he had an aide with him at all times, and that the very maximum aide hours they would be able to get was three hours a day. The intial plan to extend his hours at school after the first three weeks, was completely abandoned, without asking my views on how to make such an extension work.
I was truly devastated; I had longed for the day that my youngest son would attend school full time – as he is legally entitled (and even required) to do. I wanted to be able to go get a job for myself so our family could get an adequate income instead of all four of us relying on the one income as we have now for years. More importantly though, I wanted my youngest son to have the chance to grow in his independence, to have a school teach him what he needs to know, to have him learn. I wanted so many simple things other families are allowed to take for granted, and it was all taken away from me at that meeting.
I was told too that my youngest son had to learn to be “part of the pack,” that he had to learn that “teacher was boss.” My request for an individualised approach for him was shot down without discussion since they said it would make him think he was allowed to do things differently than other kids and he had to learn to be one of them. I wish I was exaggerating, I wish this wasn’t as bad as it really was, but I have all of this recorded in verbatim meeting minutes and in emails – all there in black and white. In fact, it was so offensive in its black and white written version, that a Ministry of Education person carefully re-wrote the meeting report to remove the hurtful (and even illegal) remarks and requirements. I have both versions of the meeting records, and the difference between the real and the sanitised versions is stark.
I was also told at this meeting, again in front of the others attending, that other parents didn’t want their kids in my youngest son’s class. My son, my gentle, fun-loving, never hurt-a-fly son – a bright young boy with suspected mild autism, and so a bit different and a little challenging, but hardly a problem-child. Why the principal felt it was necessary to share this news about other parents not liking him, in front of me and the others present, remains a cruel mystery to me to this day. It had absolutely nothing to do with the purpose of the meeting, we were all there to discuss how best to help my son, not to talk about what other parents – with no relationship or connection to his well-being – thought about him.
I was so angry by this point – so outraged at their attitude towards my kids and me – that I was in tears. The people at the meeting mistook my tears for sadness, they tried to comfort me – they claimed to be worried about my stress levels, but all my stress at this time was not caused by my lovely kids, it was all caused by having to deal with these short-sighted, barrier-creating, anti-diversity, adults, whose job was meant to be looking after and teaching my children.
In that final week of my children being at this school, I was spending every day in tears. I had frequent occasions when my heart would suddenly speed up and seem to skip a few beats, to the effect that at times I almost fainted. I was experiencing panic attacks each day, and during the night too. I lost hours of sleep every night. My IBS gut symptoms had almost disappeared in the months prior after two years of interventions, but all of that progress was lost as my symptoms came rushing back with a vengeance during this time of extreme stress.
I felt powerless, frustrated, distressed. I was the unwanted mother, with the unwanted children that a school was trying to push out, and they were going to win, because what option did I really have anymore? I was desperately worried about my children’s well-being at a school where last year my eldest had an incident when he was not supervised when he was meant to be and ended up getting seven stitches to his head, and this year the younger son had run across a road during the school day when he was supposedly supervised too. I felt the school was not looking after my kids adequately, wasn’t teaching either of them well, and was blaming my children for the school’s failures to care for and teach them both. I’d tried to help the school to understand how to best care for my children, but in not listening to me or valuing my experience and insights, they’d created situations where things were increasingly going wrong and they continued to not look at their own systems and how they could and should have been improved to everyone’s benefit.
Things were spiralling away from my ability to fix them, and each day my children continued to attend that school felt like a lost day of learning, and a potential danger to them.
I had a choice. Fight, or flight. Fight the system, fight the people, fight to keep my children somewhere they weren’t even wanted even though they had every right to be there. Or find them a new school, take a chance that there might be somewhere they will actually be wanted, be taught, be safe. What happened next – the search for a new school, and how we would make that eventual and incredibly important decision – is the subject of another post.
What I learnt this year, through those horrible weeks, was this: No one is immune to facing this sort of discrimination against their kids – no matter your education, or how much time you volunteer to help out, how much you learn or share or care or sacrifice, no matter who you are or what your standing in a school or a community, you can end up in this situation. A situation that is tolerated far too often, as if it’s just the way things are and will always be. It shouldn’t be and doesn’t have to be this way, the hardship created by this should matter to everyone who cares about children, education, and having a society worth living in. The way things are now is in no one’s best interests, this needs to change.