Hi everyone! This is Jet. He’s a tenacious, full of life, mischievous, and loveable 4 year old. Jet came into this world at full force, and hasn’t stopped since. The first time we noticed that there was something of concern was when Jet was 15-18 months old. He was learning words, and trying to communicate with us, until one morning it sort of all vanished. At a regular check up with our family Doctor at 2, our concerns were brought forward and before the inevitable ASD testing was done we were sent to an Ear Nose and Throat doctor to assess Jets hearing to ensure that his regression in communication wasn’t due to anything physical. He was diagnosed with fluid behind his eardrum and was scheduled for an operation to put tubes in. After the operation Jet made little progress and we decided to bring our concerns to his paediatricrian. We both agreed to put him in the wait list for the ASD assessment testing. That was September of 2017. By April of 2018, and an extensive amount of research on my part, we sought diagnosis privately. Jet was then diagnosed with Severe Autism with Globalization developmental delay. Soul crushing. Heart breaking. But finally an answer. It didn’t change our love for him, but it changed the way we fought for him.
Jets diagnosis was huge for us. The recommendation was for him to have IBI therapy, which is Intensive Behavioural Intervention. We began researching what that entailed and what was available where we lived. Eventually we were crushed to find out the wait list for any service was 2 years. The recommendations for Jet was to have therapy 20-40hours a week. If we sought private therapy, it would cost our family up to $2000 a week. We aren’t a wealthy family, I’m a nurse, and my husband a hard rock miner. Our income is quite livable, but to ask us to find an additional $2000 a week was unattainable.
Jet has done some programs through our local autism group, they have been helpful, mainly for us to incorporate into his life. But in order for him to have the best possible fight at living independently one day is through IBI. By the time Jet is pulled off the wait list, he will have aged out of the program. What good is that? When Jet was diagnosed we, were told that children who were put on the wait list in 2015 were being provided with treatment. That meant if we wanted any sort of treatment for our son, we would have had to put him on the wait list the moment he was born.
Jet is scheduled to start school this year. And I can’t help but feel defeated that I am sending him so very unprepared. Not potty trained, unable to communicate verbally, and unsure how to navigate the world. I am leaving him at the mercy of people who don’t know him, and him not being able to tell them he’s okay or not okay. How can I even begin to feel good about that? Would you? Could you?