As I watch Zion arrange his cars in a straight line I knew today was going to be the last day before things change forever. I knew what was to come but hearing it from a professional makes it real. I can hear her footsteps get closer and with every footstep I hear I try preparing myself, but you can never prepare yourself enough for this.
“Mrs.Franklin, I am diagnosing your son with Autism Spectrum Disorder.”
As I stare at my 2-year-old playing I wonder what now? What about his future? What does this mean for us as a family? And I can feel warm tears roll down my cheeks. Approximately 1 in 59 children in 2018 were diagnosed with autism spectrum disorder. Zion was 18 months when he received his diagnosis. He was 12 months when I knew something was different about him. He was always in his own world, never showed eye contact, had not said his first word and lined up his toys in a straight line every day. He seemed sad all the time and getting him to interact with us was difficult. It should not be this difficult to play with a child. It should come more naturally but it didn’t.
It took us about 5 months to get an appointment with a specialist and 2 weeks later we received our diagnosis. It was something we tried to prepare for by reading and doing research but no amount of preperation can help you with the emotions that were to come. As parents we went through a variety of emotions, anger, and guilt and we blamed ourselves for his diagnosis. Was it the Sushi and pop I consumed while pregnant? These were just some of the things I couldn’t stop asking myself but I never took time to digest the diagnosis and feelings, instead I jumped into figuring out an early intervention for Zion.
Autism spectrum disorder is not something that is talked about much and there are so many stigmas around the topic. “Oh well, at least he is cute” is something we often get. This comment references that children and adults on the spectrum are not smart so they won’t have a bright future.
Autism is a developmental disorder and is a spectrum disorder, which means every child on the autism spectrum have different skills, challenges and needs. It is an invisible disability which means sometimes there are no obvious signs and not all people on the spectrum have severe autism. Usually when someone thinks of autism they immediately think of adults or a child who has severe autism but that is not the case.
Kalin Bennett is the first person with autism to sign a national letter of intent to play a team sport in the NCAA division 1 level. Courtney Love an American song writer and actress, Matthew Labyorteaux an American television and voice actor, Dan Aykroyd comedian and writer best known for his four seasons on Saturday Night Live and Ghostbusters, and Matt Savage known as a piano prodigy are all a few incredible people diagnosed with autism spectrum disorder.
Early intervention was key to a successful future for my little one. We waited about one year before putting Zion in therapy. This was because we were waiting for funding but funding takes a long time and we still haven’t received ours yet. It is estimated that a family spends on average $80,000 a year on early intervention but we couldn’t wait long, so in September 2019 we started Zion at SAAAC for ABA and he joined Hollandbloorview nursery play and learn.
Applied behavioral analysis (ABA) is therapy that can improve social, communication, and learning skills through positive reinforcement. Some experts and caregivers including myself consider ABA to be the Gold-standard treatment for children on the autism spectrum.
Hollandbloorview nursery and ABA therapy were the best decisions we made for Zion because within weeks we saw a huge progress. He was requesting for food and items around the house using the Picture Exchange System. This was our first effective way of communication that didn’t involve him screaming and me figuring out what he needs by his cry.
October 15 2019 is a day we will never forget because it was the day he initiated play with his older brother. Autism Spectrum Disorder affects the development of social and communication skills. It can also affect the development of important play skills like the ability to copy simple actions, share objects and take turns. Noah and Zion have never played together before and it was something we had been working on and hoping would happen and it finally did.
A lot of people thought and think we are wasting our money and he will just “grow out of it”. We get comments such as “oh my son didn’t talk until he was 5 and he is fine now, children grow at their own pace, back home we never had things like this, it’s only in Canada we have so much education that we are making up things out of nothing, let kids be kids". Did we ever stop to think that there probably were children on the autism spectrum back home but because of the lack of information and awareness they were pushed to a corner or ignored?
I will be the first to admit that it is not an easy task to raise a child with a disability. But it is the hardest and most rewarding job at the same time. Everything has to be planned in advanced. We do not have the luxury of getting up and leaving. Zion is a visual learner which means we use schedules to prepare him before we leave somewhere and most times we have to take the same route to and from familiar places.
The past five months have been the most incredible and rewarding to watch Zion. He has started communicating with words and has his own personality. He is the most affectionate out of my three children and will even come give me hugs randomly. He is able to follow directions and has started playing with his grandparents. This is something he was never able to do. At the age of two Zion can read some words and has an incredible memory.
As we watch him blossom I can’t help but wonder where he would be if we were in denial or have listened to those who thought we were “wasting money” and didn’t get him the help he needed. We have started documenting Zion and raising awareness to help other parents like myself who don’t know what to do after a diagnosis or just need someone they can relate to.
We are excited about his journey on the autism spectrum because its bright and beautiful.
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