Looking back on her childhood, Helen Antonio recalls spending a great amount of her school days volunteering her time in what was known as the Special Ed room. She doesn’t remember there being any labels, or titles for the kids in that room. Even as a kid herself, she just knew they needed to be taught differently, and she knew they needed her help. What she didn’t know was, one day, her entire life would be dedicated to making sure that children with special needs, or “exceptionalities” as she better puts it, and their families, were supported in the way that they need to be.
Helen met Richard Gouveia on an online dating website in 2009. Richard laughs and says, “make note, that she was on another date and left, so she could meet me.” Helen concludes that she was in fact on another date, and was excited to leave to meet Richard at Symposium in Milton to watch the Leafs game. The couple shamelessly admit they didn’t actually watch the Leafs game, but instead quickly continued their date in the car. Their love affair began in a hurry. It was only four months later when Helen found herself expecting. But unfortunately, she did not see her pregnancy to term; in fact, the couple miscarried three pregnancies in a matter of one year. Genetic testing revealed no concrete answers as to why this happened.
But the miscarriages did not discourage Richard and Helen from pursuing a life together. Within that year, the couple bought a home together. It was at the bottom of the stairs of that home, that Richard remembers his pregnant wife, calling in sick to work because she was so nauseated. Ironically, this was reassuring for Richard, as Helen had never experienced this with her other three pregnancies. “Somehow, I just knew this time it stuck” Richard smiles. Richard’s gut instinct was accurate, because little Austin was born in April of 2011, and he was perfect. This was the couple’s first child, and like every parent, they marvelled in the milestones. Crawling, his first steps, potty training, they all seemed to be on time and for the most part, the couple had no reason to believe that he was any different from his cousins of the same age, or any other children, for that matter. Austin was was even saying words like “mom”, “dad”, “yes”, and “no”. The couple did notice a few delays, but overall, there were no serious red flags. After all, every child develops at their own pace, right?
There was no reason for concern until their well-baby appointment when Austin was 18 months and their pediatrician conducted the Nipissing test. This is a developmental screening tool used by pediatricians to assist in assessing a child’s development. Austin’s pediatrician was concerned enough to refer them to a developmental pediatrician, who identified some characteristics of autism spectrum disorder, but was hesitant to make a formal diagnosis. Instead, she made a referral to ErinoakKids, the regional provider of IBI (Intensive Behavioural Intervention), which had an approximately two to three year long waiting list for an appointment. The couple was determined to take matters into their own hands, but were shocked to learn the cost of a private psychologist. Money was tight, but they decided to use their much needed tax return to pay for a diagnosis, instead of waiting for Erinoakkids. After spending the only money they had, the private psychologist also was not prepared to make a formal diagnosis. The couple waved goodbye to almost $3,000 and were again filled with unyielding frustration and confusion. During the time that the couple was reaching out for a diagnosis, it was typical for doctors to wait until a child was at least 3 years old before making a formal diagnosis. Today, the emphasis on early intervention is essential for growth in such a crucial developmental period. It’s never been in Helen’s nature to sit back and wait for anything; she needed answers! After being disappointed again, and completely depleted of funds, she reached out to Dr. Shawn Kao, a developmental pediatrician in Brampton who had come highly recommended. She knew the chances of seeing him would be slim, as he also had a long waiting list. But as luck would have it, Dr. Kao had a cancellation two weeks out. Within 20 minutes of visiting Dr Kao, Austin had been formally diagnosed with autism spectrum disorder. Family Matters asked the couple, “what was your heart telling you regarding the accuracy of the diagnosis?” Richard, admits, he knew something was off, and he trusted Dr Kao. Helen doesn’t recall listening to her heart at all, “I had work to do, I needed to find him help, and I needed more answers. I was going to be too busy to listen to my heart.”
For the next few years, the couple endured some of their most trying times. Richard was working in the family landscaping business, and Helen worked in finance for a medical lab, but they were still just getting by as it was. Private therapy was necessary while they waited for their turn on the waiting list at Erinoakkids, which ran them about $1,000 per month. At one point, Richard almost left the family business, hoping to find a union job with benefits and more pay. In addition to the financial burden, they would have to dedicate a lot of time to appointments, which would often take Helen away from work. Helen went through several jobs over the course of two years because employers were not always sympathetic about her needing the time off. “It was just as well,” Helen dismisses. “My head was never at work, anyway.” She shares with Family Matters about the many times she would be at the filing cabinet, softly singing Coldplay’s “Fix You”, while she sobbed. She was let go of two jobs within a matter of one year because as she admits, she was not there mentally or emotionally; “I was fixated on helping my son.”
The couple made the tough decision to have Helen stay home. She took on odd and seasonal jobs, mostly dedicating her time to Austin. The couple was optimistic when Austin was fortunate enough to be part of a group that was on the waitlist for services through ErinoakKids. This hope was crushed again when the provincial government took away the funding for the program, and only offered it to children under the age of five. With children across Ontario suddenly left without funding for necessary services, a movement began to spread across the internet: #AutismDoesntEndAt5. Austin was just over five years old by then.
Eventually, the decision was overturned, and Austin was put back on the waiting list for what is now called the Ontario Autism Program. This program offers applied behavioural analysis, and teaches life skills to children with autism. As Austin was mostly non-verbal until the age of six, he was in dire need of the services at Erinoakkids. Now, at seven years old, Austin is progressing well in the program; although he is operating at a level of a four year old, he is making improvements everyday. Along their journey to “fix” Austin, though, the couple had another surprise.
The family was enjoying an outing at Bissell’s Hideaway when Helen observed two little girls interacting with each other. She remembers hearing a little girl tell another, “my name is Madison”, and being completely smitten with that little girl. She even told Richard, that if she ever had a little girl, she would love to name her Madison.
The couple was worried about having another child, but this time they decided to leave it in the hands of fate and “if it happens it happens”. As this important decision was being made, unknowingly, so was a very special person. Helen and Richard’s second child, beautiful Madison was born six weeks premature and with Down’s syndrome. Richard was heartbroken, and couldn’t help wonder what he had done to deserve this. Helen knew the only way to best help her children would be to empower herself. She started taking courses and workshops, and received her certification as a registered behavioural technician. Alongside taking workshops, Helen started working as a school lunch monitor and volunteer for the reading program supporting students who were struggling. Her journey took a twist when she was called in as an emergency teacher for Austin’s class. He was so amused that mom was his teacher. “I was always involved in my son’s school. I still remain the school council treasurer.” After that moment, while also running a before and after school program from home, Helen decided to apply for a supply educational assistant position, and landed a one with the York Board of Education. After only one day on the job, she was offered a long term opportunity. Soon after came an opportunity with the Halton region.
And while Helen’s career was thriving, there was a time when the couple’s relationship was suffering. Helen admits, “I was so fixated on helping my kids that I did put my relationship on the back burner.” Richard also admits alienating himself, as it was the only way he knew how to cope. In some ways, their relationship still suffers. There is a lack of support in their extended family. The couple says it’s difficult for some family members to understand and have patience with Austin. They say they’ve never been out alone, except for a few dinners, since Austin was born. “Looking after our kids is just not something people offer to do for us outside of us going to work.”
The couple has come to terms with this, but still offer to have other people’s children in their home for play dates, often because Austin loves the company. Helen tears up as she shares, “I know the day will come when Austin will no longer be invited to birthday parties and playdates, so for as long as kids want to hang at our house, I will gladly have them.”
Helen is now dedicating her time and career to supporting families like her own. As an instructor therapist part-time, she is responsible for facilitating applied behavioural analysis, while also working as an educational assistant. Helen feels that the systems for helping children with special needs are not perfect, and she wants her presence to be impactful. Kids spend most of their crucial developmental years in school, and so that is where she chooses to be. “If I can be the person who offers a family the same love and support that my own family needs, then the system is that much better. She now finds that she may not be able to fix Austin or Madison like she thought she could, because the fact is, they aren’t broken. She trusts that those who are equipped to support children like Austin through the system, will do so, with their best interests at heart. “I feel blessed to provide families like mine with a sense of peace because I care, and I treat their child as I expect mine to be treated.”