My name is Natasha Delaney and I do not agree with the communication method, roll-out or details on the new Ontario Autism Program. This plan needs to be paused and adjustments need to be made. I am a part-time student at Cambrian college and most importantly I’m the mother of two exceptional children on the Autism Spectrum. My children share the label of Autism; however, they are very different. My daughter has moderate autism with global developmental delay. With both Intense Behavioural Intervention and Applied Behaviour Analyses services through Child & Community Resources, my daughter was so successful, she was transitioned from the Intensive Support School to a mainstream school in an Intensive Support class-ASD/ISP class. This is the best result I could have asked for. Her brother Oden also has autism; however, he is on a different part of the spectrum. Oden has severe autism along with other complex medical needs. My son is nonverbal and uses a picture communication device to communicate. It is an IPad with an app called Prolog2go. IBI taught him how to communicate with it and showed us/Oden's support, team how to program it and back it up. Oden also has a sensory processing disorder. Oden is anemic and has PICA. Oden gets iron infusions at the local hospital to help keep his immune system up and to avoid medical complications. Oden is a runner and does not understand danger. I can not put into words the challenges I face on a daily basis with my son. I love him so much I see these challenges as a regular part of caring for him and ensuring that he is happy and healthy.
The most recent challenge for our family is that Oden will require a gastric feeding tube to be surgically inserted by the team at CHEO, if his nutrition problems do not improve. Oden has abandoned almost all foods at this point. Oden was on the waitlist for Autism Ontario Program- ABA services, we were going to work on his fear of foods in hopes to avoid the feeding tube. I can not afford private ABA or IBI. I do not have a house to sell. The challenges I encounter are always changing. The changes to the OAP mean a lot of challenges and negative side effects for me and my family. Not only do I care for my children but also my dad. In October, I also started caring for my father who has spinal cord stenosis and has declining mobility and health. My father is the only family I have nearby.
I had to alter my game plan from attending full-time to part-time college, due to my family’s needs and lack of autism support and afterschool childcare. It may take me four or more extra years to complete my goals, but I will succeed.
Extreme pressure put on my family by lack of autism supports has caused sleepless nights, high anxiety, lack of appetite and complete exhaustion. Trying to plan for the future was hard enough and now it’s even harder. My children are different and have different needs and an OAP that recognizes their unique abilities and needs is what I am are fighting for.