Finnegan

Age: 4
Provincial Riding: Lanark - Frontenac - Kingston
This is Finnegan. He will be 5 this coming April, and he has Autism.

Our autism journey has been long, and filled with much frustration. I started to notice "quirks" in Finnegan when he was a small toddler. Things like twirling string around his fingers until it cut off circulation and then falling asleep with it there. He liked to spin in circles, and would hit himself in the head when frustrated. He had a notable language delay, and at 2.5 years old, had no more then 20 words, and those words were almost impossible to understand.

A month before his 3rd birthday, I went to our family doctor to discuss my concerns and we got a referral to a local pediatrician. It took over 6 months for us to see the pediatrician. At our first appointment with her, she told us that she wanted to wait to do any assessments, as she felt he would "outgrow" his symptoms. She planned to see him again closer to his 4th birthday. So, we waited. A month before his 4th birthday, she finally agreed that he needed to be assessed as his symptoms had intensified rather then eased. She referred us to Kids Inclusive, our local childhood development center. We had another 5 month wait for our initial intake appointment with Kids Inclusive, then another 3 month wait for a formal assessment. In November 2018, following a 22 month long wait, Finnegan was finally diagnosed with Autism. He was placed on the OAP wait list in January 2019.

He is considered to be high functioning. He is the sort of kid that you would never guess was Autistic when you first met him. The more you get to know him though, the more obvious it becomes. Finnegan has extensive sensory needs, causing the world around him to be overwhelming, leading to near daily overload. He is over sensitive to noise and light, so his kindergarten classroom often triggers him. He only manages the classroom some days with the help of noise cancelling ear muffs. He is under sensitive to pain and touch. This means he doesn't feel pain the same way others do. He will spend weeks with raging infections without showing any signs of discomfort. His body doesn't react to sickness the same way and he is often without obvious symptoms when he gets sick. He requires extremely deep pressure in order for his body to truly feel things correctly.

All that being said, he is an incredibly intelligent, sweet and empathetic little boy. He is old enough now that he is beginning to understand that he is different. He knows that his ear muffs in the classroom make him stand out. He knows that other little ones his age don't need to hit themselves in the head when they get stressed. He doesn't understand how his classmates play because he is extremely literal and doesn't understand pretend play.

He knows he is different.

Unlike children with more severe Autism, Finnegan doesn't require ABA therapy. He would benefit from a bit of it, but our primary concerns for Finnegan right now are his sensory needs. He requires Occupational Therapy in order to learn how to feel comfortable in his own body and learn how to interact with a world that is not made for him. A world that overwhelms his system on a daily basis. He has been in publicly funded speech therapy since he was 2 and a half years old. Thanks to his speech therapists help, he can now fully communicate, but they are actively working on his social and pragmatic communication, which is something he still struggles with. His speech therapy ends this June, when he transfers to the school board speech therapy program, where he will not get the level of support he needs to learn how to communicate on a social level. So, his primary needs are Occupational therapy and speech therapy.

Under the new OAP, Finnegan will be denied the services that he needs most. Occupational therapy and speech therapy are not covered by the new OAP, despite the fact that autism is ,by nature, a sensory and socially based disability.

Finnegan has never received any supports or services. Given his recent placement onto the OAP wait list, he will likely not access funding until after his 6th birthday, despite having waited for over 3 years by that point to receive a diagnosis and access supports. His age means he will access less funding over his lifetime, despite my initiating the process before his 3rd birthday.

Due to his age and the sliding scale for funding, we will access next to nothing when his name finally does come up on the wait list.

Under the new OAP program, my child will become lost. He will be denied the services that he needs to thrive. His true potential may never be reached, and that potential is extraordinary. His intelligence is awe inspiring to behold, but he will have a life time worth of struggle to make the rest of the world see how incredible he truly is. If he is not given the appropriate supports for his sensory and communication needs, he may never learn how to successfully interact with the world around him.

A truly successful Autism program needs to be based on each child's individual needs, not their age and family income. A families income should not dictate the level of support their child receives, and nor does a child's age indicate the supports the require.

The old system was flawed, but the new system is dangerous. It may help cut costs and balance the budget, but it does so on the backs of vulnerable children. On the backs of my children. This is not ok.

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