Hayden’s parents took him for an auditory brainstem response test (ABR), after which he was referred to a Developmental Paediatrician.Soon after, he was diagnosed with autism, and at just two years and five months old, his mom immediately started him off on speech and Occupational therapy. Hayden’s parents also began searching for free training for parents on the spectrum.
“I remember looking around one day, trying to find ‘my’ people, families like ours, and realizing there were none bold enough to share or speak out,” Beneditte says. ‘Why me? Why my Hayden?’
“Autism means many things to many families. To ours, it’s meant banding together in surprising ways. It’s meant digging deep to find connection. It’s meant figuring out together what will make my Hayden laugh, or what will help him relax and go to sleep,” Beneditte shares.
“Autism means sometimes dragging your bedding across the house or eating chicken nuggets daily. Together, we have learned how to speak a new language, not based on grammar and syntax, but on grins and silly dance moves, ” she adds.
Beneditte also spoke of how shattered she was when Hayden was first diagnosed. “I was left broken. I cried many tears, I isolated myself from the world. I went to a very dark space, continuously asking ‘Why me? Why my Hayden?’.
She says that navigating the emotional, financial, and complex medical issues associated with this diagnosis was taxing, and as any parent of a child on the spectrum will attest, autism really does change everything.”The diagnosis changes the dynamics of your marriage, the way you socialize with friends, and even relationships with your family,” Beneditte says.
She explains, “As parents, we quickly discovered that placing unnecessary energy on that which was beyond our control was defeating. What was empowering was focusing on what we could do.”A safe environment
Hayden is now four-years-old and attends the Al-Noor Centre for Autism in Vereeniging, in the south of Johannesburg.Beneditte describes how she looked for a safe environment for Hayden, one where he would be accepted.
“I wanted Hayden to be in a holistic environment where all his needs will be met, educationally and therapeutically,” she says.
She came across Al-Noor Centre For Autism and says that although she had no idea where Hayden was on the spectrum, she called Nimra Ali Ijaz, the founder/director of Al-Noor, and arranged a school visit.
Beneditte shares that social skills training has taught Hayden the skills he needs to interact with others, including conversation and problem-solving skills. He is more open to playing with other kids as opposed to sitting alone.
Currently, he names items in his environment. He has also started stringing two-word sentences.
“They will teach you”
For other parents that may have a child that is on the autism spectrum, Beneditte’s advice is simple:
Let your child teach you: Your child will show you how to best help him/her. They will teach you patience; they will show you that love does not need to have words; they will show you their world and how to best help them in it.
Don’t let this consume you: It’s such a lonely journey, this road. Celebrate the small wins, and don’t forget self-care – go out and enjoy the world even though your family is ‘different’. The more you show up unashamed – the more society will be accepting.
Set up a routine and keep it steady: This will allow you to ensure that there is structure around you, your child and their daily activities.
“My prayer for Hayden is that of any parent, a prayer of faith and expectancy; I pray bold prayers for my son daily. I wake up in the early hours of the morning, and I prophesy greatness over my son. I make it a point to read a bible verse with Hayden daily, and I sing and worship with him,” Beneditte tells us.
“Our story is mostly heavy and beautiful. It might always be that way, and I’m okay with that. I used to lament Hayden’s condition. And I’ll be honest, some days, I still struggle,” she admits.
“My boy is autistic. There are a lot more words used to describe him too. They are written on a piece of paper shoved in a drawer. Words that make me sad to read all in a row. They feel heavy like a weight when I do,” she adds.
“But today,” Beneditte says “I look at my spikey haired four-year-old who can’t fully speak but occasionally says a few words, and I see all the beauty he has brought out of us. I see all the joy he pours back in and the mountains he climbs to thrive. He’s a beautiful boy, And I cannot tell you how grateful I am for him.”