Our son Michael is a smart, funny, loving (loves to cuddle), very tech savvy 12 year old boy. He loves video games, YouTube, the weather, sports highlights of any kind and has a fascination with hydro towers. We think that comes from having all our family a two hour drive from home and driving regularly to see them when he was very young. Maybe, we are not really sure. Michael thrives on routine.
Michael was diagnosed with Autism Spectrum Disorder at the age of four. During our first parent teacher day during Junior Kindergarten, his teacher raised several concerns with us related to Michael’s interactions or lack thereof with the other students and his general behavior. His teacher suggested we have the school put him on the list for a behavioral assessment. She was concerned that he may have ASD. We were advised that it could be a lengthy wait for the assessment, as the school had limited spots available for the assessment each year and they were filled based on needs, not first come first served.
Around the same time, Michael and his dad whet trick or treating for Halloween. Michael would not acknowledge the several kids that came up to him to say hi and he just kept repeating a line from a Toopy and Binoo episode…”I just have to get to the next door” over and over again. Dad was in pretty rough shape after coming home that night and was pretty sure that the teacher had a reason to be concerned.
We started looking at other options for an assessment, as we were not prepared to wait. We spoke with our pediatrician, and through lots of tears, raised our concerns, of ASD. Her comment was that based on her interaction with Michael, she just did not see him being autistic. She had a nephew that was, and was pretty sure Michael was not.
We were maybe a little relieved at the time, but knew we still needed to move forward with the assessment, as his behavior was not changing at school.
So we reached out to a private psychologist that our neighbor who worked with children suffering from mental health provided. Six months later and a few thousand dollars, we had a diagnosis of “high functioning autism”. That came with a few numbers to call for assistance but not much else.
We cried a lot, much like I am now as I write this. We wondered why us, why him, how will this affect our family (Michael has an older sister, Lillie). Mostly we wondered what was next.
We shared the news with our family and the school, even our pediatrician (she was somewhat surprised). We confirmed the diagnosis with a Behavioral Pediatrician she recommended.
The school started the IEP process and looking at additional resources and support for Michael. Michael stared grade 1 with a shared EA .
I was fortunate to have a cousin who heard of Michael’s diagnosis, and had a close friend that had a daughter on the spectrum that lived in our area. Her friend offered to meet with us and share her experiences.
She showed up with a binder of information for us and walked us through where she started. We now had a list of contacts and phone numbers, and maybe a glimmer of hope.
That started our journey so familiar to ASD parents, the waitlist! We were put on the waitlist for ASD related services. I remember going to one of the assessments for what was referred to as IBI at the time. We were told Michael would not qualify as he was too high functioning. We were put on the ABA group therapy waitlist.
We were not going to sit and wait, so at the same time, we met with a second Behavioral Pediatrician and she put us in touch with a speech therapist. We started there with group based speech and language therapy, because that is where Michael struggles the most is his social communication.
Our speech therapists introduced us to an Occupational therapist and an ABA therapist. We started various OT and ABA groups and camps.
We finally got a call that Michael’s name had bubbled up to the top of the ABA list and he was eligible for the 10 week ABA group session. The group was based around entering into play. We were both skeptical of what the benefit was going to be, but loved the idea, because Michael would never ask anyone to play at school or home. About half way thought the 10 weeks, Michael came up stairs and said to his dad “hey dad do you want to play with me”. Such a simple sentence and something most people take for granted, your kid asking you to play with them. Dad said yes by the way. That is when we realized how beneficial ABA could be.
Michael completed the 10 weeks and went back on to the wait list. Each time his name came up to the top of the list we saw the benefits of ABA.
In between sessions we continued the Speech and Language therapy, and introduced ABA based social skills groups and camps when we could.
Eventually we were fortunate enough to be able to provide Michael with 2 hours a week of one on one ABA therapy. That is when the progress really stared.
The last time Michael’s name came to the top of the waitlist, was right after the introduction of the new Ontario Autism Program. We were told we could do the 10 week group or go to the direct funding option and build our own program. We met with our ABA therapist and put together a plan to continue the one on one therapy. From a finical perspective, this was quite the relief for us. We could finally start paying down our debts and start doing more things with our kids.
To put it into perspective, Michael has gone from having MAJOR meltdowns daily if not multiple times a day, which included hitting his head on the walls, throwing things, hitting us, biting us, screaming and crying. He had meltdowns at school, threw chairs in class, etc. While he is verbal, he was unable to communicate his feelings or why he was having a meltdown, he just lashed out.
Michael currently receives 1 ˝ hours a week in an ABA based social skills group though the OAP. He is also in a speech group 1 hour every two weeks.
Thanks to all these services, over the course of the last 6 years, Michael rarely has a full out meltdown, maybe one every 6 months, he is able to communicate how he feels with words. He identifies stressful situations and pulls himself from that situation (still a work in progress). He still struggles with cognitive understanding and communications, but we see improvements all time.
Next year he starts grade 7 and that scares me. A new school, walking to school, rotary, the cafeteria for lunch and most of all kids and staff who don’t’ know him and he doesn’t know. He still struggles with new routines and new people.
We consider ourselves lucky, as Michael has always been verbal, and has shown great improvements. We are hopeful that he will go on to have a meaningful life, well we were until the changes to the OAP were announced.
At the end of the day, we can restructure our finances to continue with Michael’s therapy needs, for now, it won’t be easy, be we will do it. If his needs change as he enters grade 7, hits puberty etc., we do not know what we will be able to afford. Beyond the cost, we are not sure what services will be available from our provider going forward. They are already considering layoffs and expecting a reduction in clients. Without continued services our fear is Michael will regress.