Quinn and Noah Somerton

Provincial Riding: Haldimand - Norfolk
Quinn is 6yrs old and is currently receiving services. He has been in IBI therapy in our home for the last 18 months. Our journey began at 18 months old in March 2014 when we started speech therapy and were waitlisted for a diagnosis for 1 yr. At 27 months old in February 2015 we received a diagnosis of Globalized Developmental Delay. Relieved we didn't get an ASD diagnosis we tried speech for 8 more months. With meltdowns every session and no noticeable improvement we started wondering if our diagnosis had been wrong.... We moved to a new city in June 2016 where we were waitlisted for speech AGAIN. After finally getting intk speech in October 2016 we asked for a second opinion from a doctor. ANOTHER WAITLIST... we were finally seen in January of 2017. On diagnosis day we knew what to expect but hearing the words severe ASD still broke my heart. Diagnosis confirmed all the hardships I had feared Quinn would face in life...I cried the whole way home from the doctor that day and as I like to say...sat in the dark for a while mourning my son and the dreams, I had for him.... Meeting after meeting we were finally given the chance to receive direct funded services of 8 and 10 thousand dollars if we took him off all the direct service waitlists... My sister in law is a BCBA and supported us in making the decision to go with the Direct Funded Option. I searched tirelessly every day while on maternity leave with my youngest son... For 6 months, emails every day, phone calls and tears, searching for therapist to come into our house all saying they were too busy, they had waitlists, or they simply wouldn’t travel to our rural home in Simcoe, Ont...

We went on yet another waitlist for a center in May of 2017 and it took us until August of 2018 to hear that Quinn’s name had finally come to the top...!! It was a 45-minute drive one way from our house. In the meantime, because we were lucky enough to have Lindsay in our family to help us navigate this new confusing world we had entered and make proper connections Quinn finally had a therapy team. We spent thousands of dollars setting up a therapy room in our home and acquiring private providers to come carry out Quinn's IBI therapy.

At the beginning of his therapy he was nonverbal, had trouble with transitions, haircuts were a nightmare (enough to give me PTSD) because I felt like I was torturing my son the two times a year I could work up the courage to cut it. He was not toilet trained, didn’t call me mommy or even notice when I came into a room. He has eating issues and sleep issues. When he went to school he cried every day I left him with his EA and I cried most days listening to him scream through his behaviours in therapy because I knew if I did what every mother here wants to do when your child is hurting I would be halting his progress....NOW, 18 months later he goes to school every afternoon and greets his EA with a smile and Hi. I waited five years to hear I love you, six years to hear him say hi Mommy when I walk into a room and three weeks ago, he read his first book with three-word sentences, he still has issues with haircuts, sleep and food but those are all things we were able to work on because receive the $74,000 a year it cost to have these therapists who have become a part of our family come into our home to help our son... We are one of the 8400 families... Quinn does 25 hours of therapy a week and it's priceless to our family...

With the new Ontario Autism Program that comes into effect April 1st he will be losing his funding! Because my husband and I are hard-working parents with good jobs he will only be getting approximately $3,000 a year! This will not even come close to covering the intensity we have been told he will require for the next two years.

I am also here because I am also a waitlist parent!! My youngest son Noah is on a waitlist at Hamilton Health Sciences to have an assessment for diagnosis and has been on that waitlist since September of 2018. In my heart I know we will probably be getting that ASD diagnosis.

What if he is diagnosed with ASD too! Our family won't be affording anything because we simply can’t cover the near $125,000 dollars a year having two children IN THERAPY will cost. How do you choose which of your children deserves therapy more? Or how do you decide that neither can have this life changing therapy because you can’t financially provide it? I thought my heart broke the day we got diagnosed. Now every day I look at my children and wonder how will we pay for therapy? Who will look after them when I no longer can if they don’t know how to be independent? I had hope for their future but that has all been stolen away with this new plan. I am not here fighting for just my children but all OUR children. The kids with no voice, until they have a voice.! We will advocate for you and we will fight for you until the day you can do it for yourself! We are the 100 percent! We are United! and WE WILL NOT settle because AUTISM DOESN’T END AT FORD!

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