how i care for autism: 'it took grieving and mourning to get me to where i am today'

when did you first realize that your son was different?

what were some of the earliest signs?

how did isaiah’s diagnosis impact you?

i went through a depression for about three months after he was diagnosed, and also a process of grieving prior to that. i had my suspicions and while my church sisters, as we refer to each other, didn’t come right out and say it, they mentioned something called pervasive developmental disorder – not otherwise specified (pdd-nos). i went online and read about it and learned how it’s connected to autism, and i recognized my son in some of the signs that were described. when we got the diagnosis, we were devastated.

what was the turning point?

how have you and your husband supported isaiah?

we used every bit of our last savings to get him into speech therapy, play therapy, and social skills groups at the geneva centre for autism . we also joined triple p parenting groups and variety village so that isaiah can have an opportunity to do all sorts of activities to help improve his physical, fine motor and social skills, five or six days a week. we knew that if given a choice, he would be introverted, in front of a tv or a tablet or in a corner by himself, and so seven days a week, we have him busy and engaged. on any given day, he’s either with his therapist or he’s doing activities at variety village, or he is taking swimming lessons. we basically live in our van and we have him doing activities all over the city.

did you ever hire any outside help?

“i’m grateful that my older son adores isaiah (left) and even though he has his own his family, i know that he will be there for his brother,” says his isaiah’s mother, sherron. supplied

how did you know what activities to get him involved him in?

what’s the hardest part of caring for a child with special needs?

did you receive any counselling to help you navigate your son’s diagnosis?

“when isaiah was first diagnosed, people would say to me that god chose me because i am so strong, but i am not a hero because i got a disabled child and they didn’t,” says sherron grant. supplied

if isaiah didn’t have family support, what options would be available to him as an adult?

i am the executive director of the sawubona africentric circle of support , a support group for black parents who have a child with special needs, and while some families can afford a day program, there are those who can’t pay for it and their kids are stuck at home on a computer.

developmental services ontario does provide families who have a child with a disability with $5,000 annually, and those funds can be used to help pay for a day program, a gym membership or a specific support service. the problem is that $5,000 doesn’t get you very far. with that money, a family can get some respite and they might be able to hire a personal support worker to help out for a few shifts over a short period of time. a young person with a disability whose family does not have the financial means isn’t doing a lot — they’re on their own and the system doesn’t seem to care.

and then they grow out of the pediatric medical system.

do you feel optimistic that something will change in the future?

i’m hearing a lot of talk and seeing the formation of many different committees — there is a national autism strategy , and a lot of papers being written and the government has all the data they could possibly need to make meaningful changes for my son and others like him. no one knows what is being done with all those committees, agencies and the research. the questions are being asked, but the responses are slow in coming. enough with the lip service already.

isaiah is fortunate to have parents who are so involved in his care.

we have the financial and intellectual means to create opportunities for our son, but we know that many families aren’t able to do the same. in canada, it’s disheartening that 12 per cent of people with a disability have been refused a job because of their condition. our society continues to expect people to fit in a box, and if you don’t, you’re ignored, devalued and discarded. as parents, we appreciate the pat on the back, but we want to be an inspiration to other families, especially racialized families who have a child with a disability because we know the challenges they face.

what’s helpful to say to someone who has a child with autism?

what advice do you have for parents whose child may have a life-changing diagnosis?

what gives you hope for the future?