Harlow seemed typically developing until around the age of one. Her gross motor skills are excellent and so any other delays didn't seem to be a big deal. She was chewing on and eating some strange things though and that led me to ask our family doctor about it and we ended up seeing a paediatrician. It was clear from that point on that we were headed to some form of diagnosis. Harlow as diagnosed with Autism Level 2, two days after her second birthday.
This was in May of 2017, the month before the new OAP rolled out. We did what we needed to do to get on the list for ABA/IBI with Kinark and were told it would be around a year wait at that time. We knew then that we shouldn't wait to start services and, as it would only be a year, contacted a private provider. We started services in August of 2017 and have been funding them ever since. We have never been able to afford the full amount of services our daughter has required. After a job and salary change for my husband last year we started sinking further and further into debt. In January of this year we made the difficult decision to scale her therapy back to the minimum hours.
On February 6, which is coincidentally my birthday, all of our hope of ever having a fully-funded therapy program for our now non-verbal almost 4 year-old was lost.
It has been a highly emotional time as our daughter is progressing in therapy and we have a tease of what could be if we could just afford to give her everything she needs but we can't. Even with my parents now also contributing she is still not at the 20 hours that she would need to really thrive. JK starts in September and my daughter has approximately 5 words in her vocabulary that she uses to communicate and 20 or 30 more that she will repeat if you prompt her. We have been potty-training since December and at the current rate she will likely not be trained in time for JK. When she is upset she self-harms. As a parent there is nothing more upsetting than watching your child hurt themselves because they are upset they can't communicate.
To fund therapy, we stopped making repairs to our home, we stopped contributing to our RRSPs (neither of us has a pension), we chose to go into debt to pay for her future. We thought that at some point the Government would pay their share and we could dig our way back out but now, with the Childhood Budgets, we will have to contribute forever. It will never be enough to fund the kind of therapy program that my daughter will need to succeed and my heart is broken.
The announcement to that they would not income test was a step in the right direction but a plan that is needs-based is the ONLY answer for kids like my daughter. She deserves to show the world what she can do. She is so smart and energetic and determined that if given the proper chance she's going to turn it into something amazing.