ABA THERAPY FITS LIKE A GLOVE

Watching her son Anthony put on winter gloves by himself for the first time was an emotional moment for Virginia Mazzone-Ahou. 

“It was amazing to see him walk down the stairs, go to the door, pick up his shoes, put them on, grab his jacket, put it on, and then put on his winter gloves,” says Virginia. “He did it all without any prompting, without being told, and without any assistance. Literally the day before he was still needing help to do it all. One day everything just clicked, but it was thanks to hours of teaching and learning at ABA therapy.”

Virginia laments how little understanding there is about what parents and children with autism struggle with daily. She says it might not sound like much to celebrate, but getting ready to go outside on a wintery day is a huge achievement in their world.

From birth, Anthony had a lot of issues with sleeping and eating. Virginia also recognized that he was meeting most of his milestones, just a little later than most kids. She began to suspect he was autistic at around 15 months.

“Google, googling is a nightmare,” laughs Virginia. “I did my research and he had a lot of the same characteristics as described for autism. At his 18-month appointment, I was referred over to early intervention and Anthony was seen in under three months. For example they observed how he played and how he interacted with others and of course they saw a few red flags. The official diagnosis came about six months later.”

Virginia was the one who delayed the diagnosis because she was working at the time and couldn’t get any time off work. She says she knew he had autism, and was doing all right things at the beginning, but she had no clue that any of the services Anthony would need, meant being on a wait list, for years. 

“The diagnosis was made when he was about two-and-a-half and we waited for just under four years before he could begin any government-funded ABA therapy,” explains Virginia. “Before beginning with ABA, we did some speech therapy, some occupational therapy, and some physical therapy and had him enrolled in a communication focused preschool. We did what we could, but it’s all very expensive. 

Virginia gave up her job because Anthony needed around the clock care. He was non-verbal, developmentally delayed and also diagnosed with celiac disease, which made it even harder to introduce new foods as they also struggled with him not eating solids as well. 

Virginia and her husband sold their home in Stouffville and downsized to a smaller location in Whitby to free up some money to pay for Anthony’s therapies. Her husband is self-employed and works hard to stay afloat. 

ABA therapy has been life-changing according to Virginia.

“Within two weeks of starting ABA, Anthony was smiling and just a much happier kid. It didn’t take long before he began to dress himself in the mornings. His communication has come a long way too. He’s now on that fine line between being verbal or non-verbal. He can piece together words and a sentence or two and make some requests. He’s able to sit and feed himself, which once again wouldn’t have been possible if not for ABA therapy,” she explains.

“Neurotypical parents with their typical children will never understand how big these moments are for parents with autistic children and that’s understandable. For me, it’s like ‘Oh my God, look what just happened.’ Sitting at the table and independently spooning the food into his mouth himself is an abundance of independence for a child with autism.”

Anthony is working on many things with his therapy team from road safety to better understanding the dynamics of a classroom setting. He attends school part-time but his parents are hoping to increase his days in the future.

“My son is the hardest worker I know,” Virginia says with pride. “He is a quirky, funny, ridiculously funny, little guy. He’s just an amazing kid. He’s – always, always, always – smiling. The only time he has stopped smiling in the last four years was during that three-month lockdown because of COVID-19 when he couldn’t go to ABA.”

Anthony is 11 now. If there’s anything Virginia could do over, it would be to get him started in ABA therapy sooner and that for us it’s important that help is maintained across one’s life span. She wonders how much further ahead he would be if they could have started ABA when he was first diagnosed before he was three.

“Parents just don’t know what to do with their children when they’re first diagnosed with autism,” explains Virginia. “Sadly, there isn’t enough help in the system to educate parents as to what they can do from the diagnosis onward.”

Virginia says she has been fortunate to find a supportive community of parents on-line.

“They’re my support system,” she says. “We love each other and really no one else is going to understand that unless you’re affected by autism. It feels like we’re family and that’s just the way it is. They’re the people I turn to if we’re having a bad day, or on days as an advocate , I’m called out about ABA therapy, being told that I’m abusing my child by allowing him to be subjected to it. I have a support system that I absolutely rely on who are also advocates for ABA therapy. 

“ABA may not be for everyone, but I’m speaking about my experience, and ABA works. ABA is not a one-way therapy session. It is tailored specifically to my child’s needs. It’s backed up by data. It’s backed up by people properly assessing my child. It’s backed up by reports I get from our therapist. AND I can back it up from what I see in my son. It is definitely not abusive. 

What I want people to understand is that no child is the same and therapy must take place when a child is diagnosed. If a child isn’t given the proper tools, there is no way that they will have a chance to reach their potential.”

Virginia’s hope for Anthony is to make sure he can take care of himself and live an independent life.