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

in canada, one in 66 children are diagnosed with theautism spectrum disorder, according to areportby the public health agency of canada. it is estimated thatmalesare four times more likely to be identified than females, and the majority of children are diagnosed byage 12.

autism is a developmental condition that impacts behaviour, learning and social interaction, and in severe cases, it interferes with daily functioning. while there is no one cause for autism, someknown linkshave been established, such as family history, advanced parental age, pregnancies spaced out less than one year apart, birth complications, as well asmaternal gestational diabetesand prenatal exposure topollution, pesticidesand certainmedications.

a child with autism usually requires constant care, and while there are many local services available to families in ontario, the cracks in the system begin to surface only after adolescence. by the time a child with autism turns 21, the gaps in services become so apparent that those without family support or financial means, have nowhere to turn to. the caregiving is often left in the hands of ageing parents, many of which reach out to organizations such as thecanadian centre for caregiving excellencefor help and support.

sherron and clovis grant are parents to an adult son with autism and they run thesawubona africentric circle of supportto help racialized families through their own journey with special needs. in a conversation with healthing, sherron, a school principal, shared details about her son isaiah’s early signs of autism and how she and her husband navigated his diagnosis and care over the years. she also opened up about why she chose to forgo traditional therapy, decided to share her pain and fears with other moms who were going through a similar experience and revealed how she shifted from asking ‘why us?’ to fighting for her son’s future.

this interview has been edited for length and clarity.

when did you first realize that your son was different?

at age two, i knew that something was awry, that isaiah wasn’t developing like his older brother. i was running a home daycare and i had several children who were around the same age as isaiah, and i could tell that his development was lagging. we sought help from our family doctor, went to speech pathology, and then a couple of teachers from our church congregation suggested that we have him tested. we did, and at age four, isaiah was diagnosed with autism.

what were some of the earliest signs?

mostly, it was the language, but i also noticed that he wasn’t interested in playing with the other kids, and most of the children in our home daycare were kids he knew from church. he would often be in a corner, playing by himself. he wasn’t really interested in books, he’d open them up to a favourite page and spread them around the living room, and while the other kids were building a tower, isaiah would dump the blocks in a box. he was always very loving and affectionate, unlike what the signs say, and he had pretty good eye contact and although it was odd, it was there, but his speech was impaired, and he was a toe walker, all of which are typical signs of autism.

how didisaiah’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.

the prognosis was terrible and basically at that time, you were told to institutionalize your child because they would be of no use to you and to the world. my husband studied psychology and he understood autism and all the different mental health disorders, but as a mom, you feel like your dreams are shattered. it’s like you have this beautiful mirror art with all your child’s dreams in it, and an autism diagnosis felt like someone threw a rock at it. i was very sad and spent months asking, ‘why me?’ ‘why him?’ ‘why us?.’

what was the turning point?

i realized that i had a six year old and a four year old and while i was well aware that the prognosis wasn’t good, i thought to myself, ‘isaiah is alive, he has a pulse, he’s got a brain and i have to figure out how i can get him to use the gifts that god has given him.’ i read about temple grandin and carly fleischmann, and i realized that there are autistic individuals who have a full life. and what makes the difference is the work that you put into it as a parent and the financial sacrifices you make, so i wiped my tears and i said to myself, ‘you have got to get to work.’ it took grieving and mourning, reading, studying and connecting with other families to get me to where i am today. that, and the willingness to fight a good fight.

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 pparenting groups and variety villageso 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?

because of where his developmental level is at, isaiah didn’t go to college or university and picking up a trade would have been difficult. we looked at day programs and it just wasn’t stimulating enough for him. cognitively, he may be at the level of a child who is six years old, but he knows he is a man and doesn’t like to be talked down to or treated like a child, so we hired two personal support workers to assist us five days a week – my husband and i work with them to develop a full-day schedule for him.

in addition to setting him up with his personal support workers, on thursdays, isaiah has a newspaper route, and he does that independently and is able to get a little money for himself. he is meticulous and fantastic at it. he is now also a part of an urban farming program, and the two personal workers support him in that. isaiah and the workers cook together, work out together, they run errands, go to the library and hang out. for a while, he also volunteered at a local food bank. he has a full life.

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

we listen to what he wants and what he’s interested in, and we also consider the feedback of those around him. at one of his former schools, he used to do a lot of gardening and his teacher shared how much he loved it. we had him volunteer at a community garden and when the opportunity came up for him to have his own urban farm and make money from that, we applied to a program, and his application was accepted. the commitment for urban farming is anywhere between two to four years, and if he still enjoys it, we will help him find his own plot of land so that he can continue to be self-employed.

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

his needs are so great, and for people with a disability over the age of 21, there aren’t many support services out there. parents have to get creative, and at some point, we get tired of begging and knocking on doors. we’ve put in so much energy into fighting the health system, the school system, and going through puberty with our child, that when you see your peers become empty nesters and their children leave home to go to college or university or to enter the world of work, it makes you feel like you’re right back at square one again.

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

as parents, we didn’t receive any support — instead, we were given a piece of paper from the doctor with the formal diagnosis, and we were expected to find our own way through it. there was a period when we stopped going to church because of the way our son was treated. there was also a time when my faith was quite challenged, and so i sought emotional support from the people around us, and i also attended a parents’ support group. to just be in a room with mostly other moms who understood where i was coming from — my fears, my hurt, my anger and my pain — is what got me through it. that was the best thing for me, it sustained me. traditional therapy would have been a waste of money.

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 ontariodoes 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.

we were blessed that we were connected with a doctor who is racialized — she’s a black woman who specializes in developmental disabilities, but it is quite difficult to find a doctor for an adult child after the age of 21, one who has room to take on new clients. it’s unbelievable and painful that in 2022, this is what’s happening. i appreciate that in the past 30 years, institutions have been shut down and adults with a disability are integrated in the community, but it’s not clear to me what lessons were learned to make things better for my son and for the generations that are now getting diagnosed.

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 centof 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?

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. it would be helpful if people would just try to understand and learn more about autism. do your own research, educate yourself, so you don’t continue to live in ignorance and say hurtful things, which may not be your intent, but because you haven’t done the research, it will come across as such. offer to help, to be with a child so that the parent can go pick up groceries or invite them to play with your child. don’t isolate us and don’t be hurtful — we already feel alone in the world.

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

don’t go at it alone and don’t try to push through. instead, find a support group that is culturally and linguistically responsive. also, try to get involved. join the school council or a parent advisory committee. you may not have a whole bunch of letters after your name, but the expertise you bring is your lived experience and that’s a lot to offer to the community. when you give, you will also be supported, and you’ll get that additional power to fight for your child. lastly, be positive and believe in your child. the statistics and the prognosis can be depressing and while you need to know this, there are beautiful stories out there of people who have overcome their obstacles. get inspired, put one foot in front of the other and know that the decisions you make today is what will get your child closer to where they need to be.

what gives you hope for the future?

i love my son. he has grown so much and is coming into his own. there are times when he takes a few steps back, but when i see the milestones, that gives me hope and helps me realize that all the hard work that we’ve put into this is blossoming into something. seeing his gains and seeing him happy gives me joy.

i am grateful to my husband that he is walking this road with me because when one is down, the other is up, and i’m also grateful that my older son adores isaiah and even though he has his own his family, i know that he will be there for his brother. some parents may put all their focus on the disabled child and ignore other children, which could create resentment between siblings, but we’ve worked hard to help our boys build a bond when they were younger, so our family is very close. isaiah is living a good life and hopefully, our story will inspire other families.