Liam is my first child and I did not have much experience with infants or toddlers, so when he started to show signs of autism (looking back I pinpoint at 8 months) I had no idea what was going on. He was so happy one moment then throwing massive temper tantrums the next, one happened in the ER and the doctor thought he must have hit his head so we had to stay overnight for examination. It was one meltdown after another that I felt like I was drowning.
He was finally diagnosed as nonverbal with mild to moderate autism that included an intellectual disability in December 2017, three months before his third birthday. It was such a relief to us because it meant we could do something! We had a gameplan which first and foremost was to get on the waitlist for the OAP. We did that as soon as we could and they gave us the wait time of 12 to 18 months. It was saddening that it would take so long, but in the meantime we had blocks of time at Kidsability that included OT and speech therapy.
I called every 3 months to check in with the wait time and to make sure we were still on the list and each time it got longer. Once the PCs took over, his wait time went from 18 to 24 months to the last time when they would not give me a number. I panicked and felt as though we were all drowning as a family. I was pregnant with a second child and we had just bought our first home, how were we to survive if we had to pay out of pocket?
We found a great new ABA business and we started him on 1 hour a week and saw improvements immediately that we bumped it up to 4 hours a week, which includes 2 hours paid by my parents.
He needs 25 plus hours of therapy a week, and we are struggling with 2 hours out of pocket.
When we heard about the new changes I felt as though I had been punched, I could not believe what I was hearing. After a year and a half of waiting, for what literally is life changing therapy, there was next to nothing. The future I could see for my son was ripped away, we are now left to choose between therapy and groceries, therapy and car payments, therapy and mortgage payments.
This new plan is not sustainable for our family, we will have to sell our house and I will not be able to work as we will make too much money to get the full amount that is being offered.
The new plan has put limits on our family when my son is already struggling with limits on his future.
No one should be made to feel as though they mean nothing, just a number on a piece of paper. But that has what the new OAP has made my son and our family.