Last week, due to the utter incompetence of our current provincial government, the schools went on strike. The issue was the complete lack of respect and pay increases for school staff belonging to the union CUPE. One of the staff members in this union are EAs, which if you’re a special needs parent, you rely on 100% while you’re kid is in school or daycare.
In other words, I was incensed, helpless and felt screwed. Luckily, however, our donut Premier realized he messed up, and reluctantly went back to the negotiation table. I’m still rooting for CUPE members to finally get the raises and respect they truly deserve, but it’s hard to have faith in our current government to do the right thing. (Their priority is to line the pockets of developers, everyone else can take a number!)
Anyways, between that and my kid being sick so often, monthly PA days, regular holidays, Christmas break, March Break and summer vacation, it’s really, really tough to scramble to find childcare. And while I’m lucky in the sense that I’m not working right now, it’s still a struggle because I literally cannot just throw my kid in some camp and be like “See ya!” When you have a special needs or autistic child, especially one that’s non-verbal, the onus is basically on you to find them adequate support at these camps, since mainstream camps don’t provide them.
You might be thinking: ‘Well yeah, that’s you’re kid, and your responsibility.’ Which is true, but if you’re thinking this, then you’re obviously not an autism parent, because EAs these days, are basically unicorns; There just aren’t enough of them to go around, and considering how little they’re paid and how tough the job is, is it any wonder? Another example of this: Technically my kid is registered at an after-school program, but he cannot start because they are still looking for a suitable candidate for the role. The job has been posted online for weeks! Further, in terms of camps, there is the added cost of hiring someone; We have applied for respite care, but are not exactly sure if and when that will come through.
I’ve since learned to pivot away from the expectation of after-school care, and actually enrolled my son in a fun activity once a week that he doesn’t seem to mind, which is awesome! However, we can’t lose the skills and social exposure he receives when he’s not in school. He has never really engaged with other kids that much, but recently has taken to physically attacking other children! Despite being enrolled in numerous classes, daycares and schools since he was a baby, he attacks other children and adults when he is feeling frustrated or overwhelmed. It is heartbreaking and incredibly difficult to face that despite our best efforts, his social skills with other kids is so undeveloped that this is how he expresses himself sometimes at almost age 4. We’ve learned to give him breaks outside, away from others, but it doesn’t always work, and frankly being around other people is a vital life skill. Humans and our ancestors are social beings who rely on others for companionship and survival. He doesn’t need to be in the thick of a group, and I’m actually shy and more comfortable with smaller groups and one-on-one conversation, but he does need to learn how to coexist peacefully, even on the sidelines. You can’t just randomly walk up to someone and scratch and aggressively grab their face or hair when you’re angry or frustrated! How do I teach a non-verbal child this? I have no freakin’ clue!
He’s in therapies, and we’re still doing everything we can, but it’s really scary to think about how much is out of your control as a parent, especially when your child has exceptionalities; We are fortunate to receive the help we do get, but are pretty much at the mercy of a somewhat dysfunctional system. Everyone agrees that children are important and the “future”, but it feels like that message gets lost in translation when it comes to how they are going to make that happen. (Hint: It’s not through “online learning” or other cost saving measures) And personally, I don’t really have any “back up” plans at the moment, it’s school or nothing, and as someone who is heavily pregnant, who’s kid can be aggressive to other kids, that is a scary prospect. We wanted to have another child, but we need extra support with our first, and honestly that would apply even if I wasn’t pregnant!
Anyways, we’ll keep doing our best to help him, and learn to keep our own emotions in check when he has a bad day and we are feeling extra overwhelmed. It’s not easy, and I’ve had numerous breakdowns, and not everyone is so sensitive or understanding as to the challenges we face. But we’ll keep fighting, daycare and school has had some positive influence on him, so focusing on that is essential. His bad days are awful, but his good days never go unappreciated!