In HIV-speak, we called them “treatment buddies”. In the early days of antiretroviral therapy, when persons living with HIV were required to take multiple pills at specific times of the day, they needed primary caregivers to help them in the process.
Most of these drugs had crazy side effects. Abandoning treatment meant being pushed to a higher line of therapy, at times with crazier side effects. Because adherence was of the essence, a treatment buddy helped his client - even if it meant cracking the whip - to keep HIV-related infections at bay and, hopefully, have a shot at longevity.
The other week, when I interviewed Pauline Wamukowa, whose son has autism, she said something, which reminded me of treatment buddy days.
“I set up a WhatsApp group for mothers who have children with autism. It’s called Autism Moms Kenya. We have over 140 members and are growing,” Pauline said.
Pauline let out a category five sigh, which almost peeled off the pink paint off her office walls.
“Most men are absent. I think men internalise a life-altering diagnosis, like autism, differently from women. I’ve done a lot of psychological studies during this season, and realised its acceptance.”
“There’s also an acceptance cycle. You want to fight it. You want to find another solution. You seek answers elsewhere. That’s why people go super-spiritual. You go round; then you come back to the realisation that the only solution is for me to accept and do the right thing.”
Several years ago, I noticed this same situation when I interviewed mothers whose children have cerebral palsy. They all concurred that, generally, men are MIA in matters of care and support.
Pauline pointed out that, contrary to popular belief, it’s not a situation that is common only with African men but men in general. In the treatment centre in Florida, USA, where she took her son, most of the primary caregivers for children with autism were women.
“Women are really carrying this burden. I’ll tell you for free, even in our WhatsApp group, most women who have special needs children are single.”
“They even fear getting into another relationship for fear of getting another child with special abilities. Men move on real quick to the next relationship, leaving women to take care of these children.”
Pauline said even when men stay, the bulk of the work of caring for the child falls on the woman. If a woman does nothing, that’s her own problem. But she was quick to add that there are highly supportive fathers.
This is my idea. Y’all can drop ideas, so we help our women carry the burden of treatment. What if (willing) companies facilitated their male employees, who have children with unique abilities, to attend therapy or special days? Facilitation can be something as simple as a fully paid day off. Or they are paying for an Uber ride to a therapy session. Or just a day off at a park or playground.
And, what if, as men, if we have a buddy who has a child with unique abilities, we give him the emotional support and safe space to share his experience?
We can even take it a step further. Take a day off and accompany him and his child to therapy. Or playground.
And what if Pauline and other folks who run treatment centres for children with special abilities started a Dads’ Day? On this day, men will take full responsibility for their children with special abilities.
