Can we talk about therapy for a second? Not even the type of therapy you choose, or the differences between ABA, IBI, etc. I need to vent about the cost.
Now, I am not one to spout political anything ever. Honestly, I am not. I have my opinions, and you're entitled to yours. Unless you start up a healthy conversation about politics, my lips are staying sealed. However, if you live in Ontario, Canada - you know where I am going with this.
Nate was diagnosed officially in October 2021, with Level 3 ASD. The therapists said a big reason why they diagnosed him Level 3, is so he'll have "more access" and "quicker access" to services and therapies, because his case is "severe." Fine. Righty-o. Sure. We finished our application for OAP (Ontario Autism Program), and submitted it right away.
We ran into a million problems with our application. First, the diagnosis letter we got from the doctor apparently didn't have all the information OAP needed. Then, they were hung up on Nate's SIN (he's 3.5, he doesn't have one), then they were hung up on my proof of address (understandable, but I had just moved and hadn't received my updated driver's license, etc). All of our utilities are in my partners name, not mine. So utility bills were out of the question. Car insurance and cell phone bills were not allowed. I finally convinced them to allow me to send in my CRA notice of assessment. Now, keep in mind, only my 2021 taxes would have my updated address... so I had to wait until March to be able to access that NOA with the updated address.
So not only did we then wait forever just to have "acceptable" documents, but we were then put on the processing waitlist. Meaning, no OAP number, no access to "core services," etc until the processing was done. This finally happened in May. We got his OAP number. YAY! But what does that give us access to? Not much. We are still even on the waitlist for our town's Autism Children's Centre (who arranges services/therapies).
When I read about the new programs happening, the Early Caregiver Mediated Program (or whatever the proper name is) and the Entry to School Program, I was STOKED. I was hoping with all my heart to enrol Nate in Kindergarten in September 2022, and the Entry to School program would've been perfect. Alas, you can't be considered for that program unless you're officially on the OAP waitlist. By the time we were finally processed and put on the waitlist, he would not have time to complete the 6-month program before starting school.
I anxiously waited for any other letter mail, e-mail, newsletter, media announcement... anything that would shine some hope on getting funding, access to services, etc. But nothing ever came. We did finally get into provincially-funded Speech Therapy, which has been a BLESSING. We touched base with a private OT, who I truly did not enjoy (we didn't go back). We eventually touched based with a public OT who honestly thought Nate didn't need OT. About 5 months into speech therapy, our therapist asked what other resources we had accessed. Well, given that I wasn't receiving any help from the children's centre here yet, I wasn't sure WHAT we could access, or even where to start. Most of my research had been googling, and creeping Autism parent Facebook groups, hoping to see something relevant to my area that I hadn't thought of.
Our speech therapist put us in contact with a resource councillor, who put us in contact with different organizations in the community to help fill out our SSAH (Special Services at Home) and ACSD (Assistance for Children with Severe Disabilities) applications. Unfortunately, that's where the scope of possible funding and help ends.
It's been tough, trying to purchase sensory items for Nate, toys to replace the ones he chews through, clothes to replace the ones he chews through, loading up on groceries for the few foods/snacks he'll eat. We have to constantly replace cups because he chews them. We need Melatonin to get him to sleep. He has fallen in love with the comfort and softness of Squishmallows (hard to find and aren't cheap). We want to expose him to as. much as we can, so we try to take him to places - which means dragging another little one along, and a hefty-fee for our family excursion. That's just the tip of the ice berg.
Every day, I look through Facebook groups and see parents who have been forced to quit their jobs, who have to take their kids out of day care, who can't FIND day care, who are struggling to afford therapy, sensory items and even groceries. I SEE YOU. I know how hard it is. We are in the exact same boat. Most of my hobbies have been sold, to buy new teething rings for Nate, to buy Squishmallows for his bed, to buy him a new coat because he ripped and chewed off the buttons.
I really wish I had a positive twist to this post. I honestly do. But I don't. It's heartbreaking on so many levels, to want to do the best for your child(ren), provide them with a sensory escape room, get them that weighted blanket you think might help, take them to a Thomas the Tank Engine exhibit because it's the ONLY thing they are interested in, and yet... it's out of reach.
I personally feel hopeless and sad when I see people asking about whether or not they can buy a playground structure for their backyard with One-Time Interim Funding from OAP. I would LOVE to buy Nate a playground structure. But because we were waitlisted for an assessment for almost a year, we missed the deadline to be eligible for the OTF. Do NOT get me wrong. I am thankful and so so happy that those parents and children are getting access to things they need - again, it's a community, not a competition. But it's hard to not be a bit sour about it, when I look at the $1400 playground structure I can't afford to get my kids.
I'm sure there are others in the same boat. And if you are a parent who got the OTF... please, do not take the above as a personal attack. It truly isn't. The deadline for eligibility for that funding was a government decision, not yours. Had we been eligible, I would have 100% jumped all over that application.
The real problem, at the root of all the waitlists, the costs, the lack of early intervention and help, is the organizations and programs put in place to "help" us. Sadly, the most effective, helpful, gracious organizations and programs are ones that aren't government-funded, and CAN'T hand out $$$$$ to every single Autism-affected family (I'm looking at you, Autism Ontario, keep up the amazing work). I'm sure there's tons of workers and volunteers in these groups that wish they could personally help every family that is desperate for assistance. I know I do.
Autism support across the globe needs to improve. Autism inclusion, acceptance, awareness have all come a long way, but no where near as far as it needs to. One day, maybe we won't need an Autism Awareness Month, or Day, because everyone will know/support/love the ASD community. Heck, I know that's the day the LGBTQ+ community is waiting for.
I want to say there's a light at the end of the tunnel. That I have hope things will change. That the government is going to release a statement tomorrow that says "hey, we've added billions more to Autism funding, a new tax credit, etc" anything that will help us parents out. I don't have that hope. I just keep wishing for a good sale on sensory items, sale on clothes, and the future of The Spectrum Mom.
Xo
The Spectrum Mom
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