Like many who care for a child with special needs, the Mendonca family’s story is not unusual, and it’s no less heartbreaking. Where it differs is in their decision to veer off into unconventional territory.
Jose Mendonca knows the despair of struggling to access critical core therapy for an autistic child. Wait lists are endless and private therapy costs are prohibitive. Paying the family bills is already difficult for the unemployed carpenter who takes on other work “when it becomes available.”
For two years, he has been relentless in his desperate search for any program his four-year-old son Nathan can access while his name floats somewhere on the Ontario Autism Program wait list, along with more than 70,000 other children. The wait time is up to seven years for costly Applied Behaviour Analysis (ABA) treatment, which includes speech and occupational therapy. Every path Mendonca has followed to date is but a stopgap to this therapy Nathan needs, according to specialists who diagnosed him at the age of two.
Mendonca has expressed his family’s anguish and frustration in emails and meetings with politicians.
It’s “a painful endless wait," he says. "And then I ask myself isn't being able to express and to speak a human right?”
The frustration, and at times anger, has driven the family to seek stem cell therapy, which is not approved as an autism treatment in Canada, outside the country.
“I saw the changes with my own eyes,” said Mendonca. “I saw the amazing improvements, straight away. I mentioned to my family doctor and he did reply that was the right way to go. The rate of success is very promising.”
Both the Stem Cell Institute in Panama and Swiss Medica in Serbia are ready to accept Nathan as soon as the family can raise the $30,000 needed for treatment and flights. Mendonca has turned to the community for help as such treatment is not covered by insurance or OHIP, and launched a GoFundMe account which has so far raised $600.
Information provided on the Swiss Medica website indicates the therapy is not a cure for autism, but an option that may help address several symptoms, such as communication, behavioural problems and focus and cognitive issues. It also states that children under 10 (ages three to seven years old) tend to benefit the most from stem cell transplants for autism.
Every donation, no matter the size, will make a difference in Nathan’s journey towards a better quality of life and in reaching his full potential, said Mendonca.
Nathan's behaviours are very complicated and demanding, said his father. He does not understand the concept of chewing, is not toilet trained, has difficulty focusing and exhibits behaviours such as screaming and flapping his hands when frustrated in his inability to communicate or understand.
“He is a very bright kid. He's our angel, very sweet and he has a bright mind too because he starts learning how to play the piano by himself and already plays a few songs.”
The family feels a sense of loss and abandonment. The system is failing autistic children, says Mendonca, and society’s lack of understanding “kind of breaks our soul.”
“They have a lot of potential.”
Having an autistic child, says Mendonca, is very demanding physically and mentally “and I think there's not any support for parents with kids with these special needs.”
“In most cases, they are like six kids into one, the behaviour and the emotional side of them can take a big toll on families," he said. “We have dealt with numerous situations where people make the most aggressive and improper comments towards our child, things like, ‘Can you make your kid shut up?’ (and) ‘Is that the way he behaves at home, don't you know how to educate your child?’”
It hurts to hear such offensive comments, said Mendonca.
“It’s very challenging emotionally, mentally, physically and economically but we love our son to the moon and back, he's our sweet angel we will never give up fighting for resources and awareness. My son is the future and that's where we should invest.”
