Services and Childcare

One thing that I think is often forgotten when it comes to parenting a child or children with neurodiverse conditions, is how much work goes into the most basic things.

Now I’m not talking leaving the house, routines, schedules, appointments (…etc) of every day life, which is also really effing hard, and I could have a whole discussion about that. I’m talking about those little things that a lot of people take for granted.

Like, for example, getting to school. I’ve been fighting for 7 whole weeks to get my son on Alternate Transportation. The bus that already is coming to my house to pick up my daughter? Yeah, that one. Because they can’t just “assume” he needs it because he has Autism. We have to talk very poorly about him and his struggles to PROVE that he needs to go on the bus. You know, because what is it there for anyways?

Or Day Camp: In order for my child(ren) to go to day camp, even a specifically special needs day camp, I have to apply for funding for a worker and show the financial officer all of our income and bills. Then talk to a Social Worker about why my kid(s) need a worker which always feels like an insult to them; advertise, interview and then hire said worker; pay just a liiiiiittle bit extra for that worker (because of course the funding won’t cover it all even though we’ve already paid for camp); ensure that payroll is set up with our payroll company (yes, we have a payroll company that knows me by name); and then ensure every two weeks that we have tracked the worker’s hours correctly to send in payroll by a certain time.

Daycare: Side note before this rant, that we were so lucky to eventually find a daycare that is incredible for Rory. But before we found them, usually no one would call us back. Or, in one instance, they sent an incredibly rude email about why they wouldn’t take my kid. You know why? There’s an inclusion program. That means that if a daycare takes a child with special needs, that they then have to hire an inclusion worker which is supposed to be paid for by the government but fun fact, the government is SUPER far behind on payment. Like, a year behind. So while I kind of get the daycare’s point – no kid should be left behind because of a program that’s literally called “inclusion”.

Just the other day, my sister happened to take Penny with her to a daycare to drop off her daughter – and one of the staff members panicked that a child they had just agreed to take (who is a friend of my sister’s) might have been Penny because they said, “she should have told me she has special needs!” So, you know, discrimination and all that. Whether or not it’s because of financial reasons, it’s still discrimination.

Afterschool care: I found it impossible to find after school care. Even the one that was supposed to be in Penny’s (soon to be Rory’s too) school, they told me that unless the child can sit down for 2 hours to do homework, they couldn’t accept them. Tell me, what kid at 5-6 years old can sit for 2 hours? Even a neurotypical child. So, if I wanted to send them, I would have to send a worker in with them. So, instead, Shamus now works overnights/early, early mornings in order to be there when they get off school.

ABA Therapy: This is one of two therapies that is offered in our province (the other one being Jasper) and paid for by Eastern Health, but the worker has to be hired by the parent. Same as the worker for day camp – we have to advertise, interview and hire said worker; ensure payroll is set up; do the payroll bi-weekly. Fire the worker if things don’t work out. Oh! And I almost forgot – you have to set up a business number with Service Canada because your family is apparently a business now for payroll reasons. Also, because it’s usually students or young people applying for these roles, a lot of times they quit and many times with little to no notice – if they even show up to the interviews. I know ones who just simply haven’t shown up after hired because they changed their mind. We have been lucky that it all usually worked out, but the anxiety is always there. Also don’t forget that a parent or caregiver has to be in the house the entire time even though the ABA Therapist is there. Nothing like financial hardship as a cherry on top of the cake.

I’m sure there are more, but these are the ones that stand out to me. It’s so great that there are programs available to help our family, but often times it feels like more of a hindrance than anything if you have to fight and work so hard on top of every other stress in life to get it.

Why are the programs there if you need to constantly prove WHY it’s needed? A person doesn’t grow out of Autism. They progress. They have gains. They grow up – as children are known to do, which means they mature. It’s possible they might even be able to mask enough to “fit in” with neurotypicals.

But guess what? The goal is not to try and turn my children into neurotypicals or for them to mask. My goal is for them to be unapologetically themselves and to give them the tools they need to participate in a largely neurotypical world. If I have to reapply for services every year, they are essentially asking me – is your kid still Autistic? And the answer will always be “yes!”  I wouldn’t be applying for these services unless they were needed.

I’m not sure what the answer is – but this doesn’t feel like it.