Hi and thanks for taking the time to read our story. We are a blended family, between my husband and I, we have 3 boys, with another on the way. Our oldest will be 7 in April, he lives with his mom full time and comes to us every other weekend. Our middle boy turned 5 in Dec and our baby is gonna be 4 in Sept. With the new baby due at the end of July. All 3 boys have been diagnosed with Autism Spectrum Disorder (ASD) now.
Our oldest who is considered moderate on the spectrum, was the only one receiving services, which will end April 30th, he is one of the 8,400. In the little over a year he has been receiving therapy, we have seen great improvement in him. He is communicating his needs with us more verbally and we are seeing less frustration and meltdowns. Before we had great difficulty getting him to go new places without a meltdown and him having to be carried in. Now he will still be hesitant but enters more willingly on his own. During his 1st year and a half at school he did not have assistance from his therapist. He would only be able to attend half days at school and spent most of that time having meltdowns. Now he is attending full days with his therapist and she is working on his presence in the contained classroom. They are making progress, however, he is not where he needs to be yet.
Our middle son who is considered mild on the spectrum, was added to the waiting list in Nov 2017, I was told he was looking at about a 2 year wait for therapy. He was diagnosed as moderate to severe ASD but I knew he could be higher functioning. I received some wonderful parent training from Child & Community Resources (CCR) on Applied Behavioural Analysis (ABA). I worked with the school (which he only attended half days that first year) and his child care facility over the summer to target those difficult areas. Through the hard work and dedication put in by his teacher, support worker at daycare and myself, we were able to set him up for a successful 2nd year of school. He has been attending school full days, having less behaviours, excelling in academics and increased integration into the mainstream classroom. Recently the Communicative Disorders Assistant at the school requested permission to use him in their report for the school board, because of the wonderful progress made through their Talk Town App being used to teach language skills.
Our youngest son is considered severe on the spectrum, with accompanying language impairment (non-verbal) and accompanying Global Developmental Delay. He attends full time child care, where he has excellent support workers who are willing to learn any and all new strategies provided to them by either myself or supporting organizations (such as CCR and Wordplay). They work with him daily on goals set out by our Speech Language Pathologist (SLP), Occupational Therapist (OT), Physio Therapist (PT) and collaborated with myself. With him being non-verbal we qualified for a pilot project for early intervention called JASPER (Joint Attention Symbolic Play Engagement Regulation). It was 12 weeks of intensive treatment twice a week, where both him and I were taught strategies to increase his engagement and functional play, as well as techniques to increase his non-verbal communication skills. It was then followed up with a monthly parent meeting for 3 months, where we would discuss how we could use the strategies and techniques at home and other locations. This program along with More Than Words offered by a Wordplay SLP, have helped us to further my youngest's skills. However, he is not even close to where he should be. We will be attending his Transition to School meeting later in March as he is supposed to start school in Sept. This concerns me greatly with his being non-verbal and unable to tell me what takes place when I am not there.
Just like most other parents, we want our children to get the best start to life. We want them to be integrated into mainstream classrooms, we want them to learn the skills needed to become independent, we want them to become successful and contributing members of society. However, what the New Ontario Autism Program (OAP) is offering will not get them to these goals. It sounds great when they say they are clearing the waitlist but they are not providing enough funds to meet the needs of our children. Therapies such as Intensive Behavioural Intervention (IBI) and Applied Behavioural Analysis (ABA) are recommended when a diagnosis of ASD has been given because they have been proven to work in most cases.
The reason IBI and ABA work so well is because they are applied consistently. Consistency, routine, repetitiveness these are all key factors in the lives of children with ASD. They need time to adjust to new routines, sometimes this can take weeks of adjustment, where your child will be acting out and unable to express their discomfort for change, sometimes it can take months to adjust. These therapists are dedicated to the goals and continue to work with your child according to their needs. Each child's needs are different that is what makes it a spectrum.
This is clear in my family, having a child at different levels has shown me the depths of this spectrum, up close and personal. Our oldest requires and was receiving 30 hours of IBI therapy per week, this was full time care during school hours. Our middle son would only require approximately 10 hours of less intense ABA therapy per week and for a shorter period of time. The youngest will require 30-35 hours of IBI therapy per week, as well as collaborating with other services to target his language impairment and Global Developmental Delay. These are the medical treatments needed for my children to reach our goals of becoming independent adults who are able to get careers later in life.
The reason the changes to the OAP are so devastating to parents of children on the spectrum are because the amount being giving can be as little as 2% of the amount needed for adequate therapy. Or as much as 110% of what you actually need in some cases. When a child gets an ear infection and requires antibiotics, you do not just give them a standard dose and send them on their way. The child receives their dose according to their weight and needs. Our children deserve to receive their therapy according to their needs and not just a standard dose prescribed to everyone.
The major issue with the New OAP, is the 75% funding cut when your child turns 6 years old. Though it is proven that early intervention is important, it is also proven that any intervention is important. The program cannot be based on age and household income. The OAP must be based on what our children need. Changes do need to be made in this province for Autism Services but there are many options that don't include taking treatments away from the most vulnerable population.
Thank you again for taking the time to read our story.