Growing up as a “special needs” kid is hard. I think easier today than when I grew up, as there have been advances in technology and services, as well as awareness, but still hard.
My twins are lucky that there is awareness of Autism and services provided. We are lucky that we live in BC rather than other parts of Canada. Where I grew up in the Maritimes, I’m told that services for autism are pretty much nonexistent. In NS, it is offered through the local hospital, IWK, and of course, there is a years long wait list, after which you have missed the “crucial window” to help your child. Irony.
Ontario has its problems as well. From what I understand, the Ford government has tried to dismantle the funding, what little there is, given as they aren’t “utilizing it well” with these “unnecessary services”. Here in BC, we are given 22, 500 per child (upon confirmation of diagnosis) that drops to 6K when your child turns 6, because they are supposed to be in the school system. You still have therapy and services to pay for, and then end up out of pocket for a lot more than 6K allows. Yes, the AFU (autism funding unit) monies are merely to suppliment the funds for your therapies… but still…. drop in the bucket.
SO… add this stress (presistant) to my current stress, that of a new school year. We live in the lower mainland of BC, Greater Vancouver. Each school district is set up differently. We are fortunate enough to have EAs (Education Assistants), and other aides in our classrooms. My children qualify for an ABASW. This is a support worker who is trained in ABA techniques. ABA is “Used as a scientific approach to understanding different behavior, applied behavior analysis (ABA) is a method of therapy used to improve or change specific behaviors. In simple terms, ABA changes the environment in order to change the behavior.” This therapy has been designated as “the accepted” method in BC as per a supreme court ruling.
In the School district that I’m in, there are 500 requests for an ABA SW, and only 250 trained persons to fill these positions. One of my twins has never had an ABA SW, because it comes down to the fact that the posting does not have enough hours. The other has had the same person for 3 years. This year, entering grade 3, is the first year that neither has an ABA SW, and to my knowledge, through 4 rounds of postings, neither has been picked, which means that my children will be assign an EA to work with them. Of course, the person assigned could be fabulous! They could also be a bad fit for my child as well. While the school district states that they will work to get a good fit for the child, the fact that my child’s need for help is a “posting” at all, is disturbing to me. I’m at the mercy of CUPE and union rules, and seniority issues, and bumping, and frankly, I may get someone who just doesn’t WANT to work with my child[ren].
It is hard enough to be a parent. It is hard enough to parent twins. It is harder still to parent special needs children with their unique issues and personalities. Both of my children also have a congenital heart condition which adds more factors. Luckily, neither are on meds, but one is waiting for another surgery. Assuming that they are growing enough, assuming that they learn to eat fruit and veggies (at all)…. *sigh
Stressed mama.
So yes, something needs to change. I’m not sure what system I think needs to change more. Adding Autism to medicare would be a help. Increasing the amount of autism funding to more than 6K would be a big help. (Of course, it has been argues that providers will then raise rates putting us parents back in the hole.) Hiring more people to be ABASW would definitely help. Getting a regulatory body rather than CUPE, a union, to assist/enforce standards would help. Having to fight systems so that my children can gain access is not the life that I thought I would have. My mother fought for me to access my education; so that I would be integrated into “regular” classes, rather than put in remedial, just becuase of my hearing loss. I had a good role model but I have a lot to learn still.
Something needs to change.
That ASD Mom 