As a mother of a special-needs child, I have often received comments by well-meaning individuals that have left scars in my soul that only time may heal. Even though I have a sense of humour about the whole thing now, I fear that someone’s rudeness or ignorance in this regard can lead to serious consequences. Not everyone has a heart of gold that forgives and a brain that forgets. Here are some situations that have left me wanting to scream out loud.
WHEN THEY ASK ME WHAT CAUSED THIS OR “IS IT GENETIC?”
My son has a rare form of congenital blindness that occurs among one in a billion people. Yes, billion. So when you ask me if it’s genetic don’t be surprised if I look like I am upset at your query. The answer is NO. Like everything else biological, yes it is genetic. But the seven other people on this planet who might have bilateral persistent hyperplasty primary vitreous are not my kin. I have never met them. What bothers me is the underlying assumption that I have passed on something to my child that could have been avoided. Just because something is genetic does not mean that it is hereditary.
Some important things that one should never say or do to a parent of a special-needs child
WHEN THEY ACT SURPRISED
It goes without saying that if you’re inviting someone with kids you should be ready to deal with whatever chaos comes with any type of children, let alone children with special needs.
I’ve moved around a lot and I’ve had to meet a lot of new people or people whom I’ve met online or at work who later invited me or my family over. Usually in such cases, I try to give people a heads-up, mentioning my son’s special needs — often accompanied by the fact that my toddler would be more of a handful than the eldest who is in his terrible threes, etc. However, when such meetings materialised, people were completely taken aback by my son crying or needing my full attention or me going into a separate room to calm him down, or giving him medicines at an exact time.
WHEN THEY ARE OBLIVIOUS BY CHOICE
Apart from an ever-growing entourage of misfits, there are people who have known me and my child all our lives. Yet every single time they meet me, they ask me the same questions and send me the same posts about miraculous cures that don’t apply to my child’s diagnosis. Every single time. If you don’t care enough to bother remembering what I said earlier, then why talk about it? Let’s talk about the weather or the deteriorating state of Pakistani politics, CPEC or Donald Trump. If I could share screenshots of the same woman sharing the same cure for blindness with me from her Facebook feed, we would probably need a bigger newspaper.
WHEN THEY OFFER TOTKAS AND DUAS OR MIRACLE CURES
Apart from being highly unhelpful, the implication from these comments is that the person offering these knows more than the highly trained medical professionals treating my child. While I am always looking for new advances in medical science and nutrition, in all honesty, most of these suggestions are only ever half-hearted attempts at sounding as if they know it all. In most cases, when I followed up with some promising new cure, they would either not know exactly what it was or it would turn out to be a terrible hoax upon further enquiry. What one should realise is that, like all parents, parents of special needs children are jugglers. They just have a lot more things up in the air than you can imagine. Unless you have something worthwhile, please stop sending people on wild goose chases making them second guess the path they are on.
WHEN THEY FORCE THEIR KINDNESS ON ME
This is a difficult one to explain but a lot of well-meaning family members have been there for us from the beginning, and I don’t mean to sound ungrateful. However, I did not really ask anyone to be part of this, as is the case with most special-needs parents. It is a lonely road. It’s probably a path of self-awareness and a perpetual learning curve that leads to the discovery of real humanity. And if you have decided to join me for a bit, it is not a favour that you should flaunt or rub in my face. It does not give you privileges on matters that concern my child’s life. Full stop. Just because you once insisted to watch the kid while the husband and I went to get groceries for two hours does not mean you can monologue on social media of your magnanimity. It does not mean that you can tell us whether we should home school our child or if ‘committing’ him is the best option.
I don’t go around micromanaging the life of every single person whose tyre I helped change; neither should you.
WHEN THEY COUNT MY BLESSINGS FOR ME OR VICE VERSA
Another well-intentioned comment that strikes me as patronising is “Your child is a blessing.” Or how lucky, in fact, am I that I don’t have it worse than so and so.
It takes a whole new level of cruelty to go to the other extreme of this spectrum when people have advised me to seek forgiveness for my sins or search for any crime in my family history that might have resulted in such a grievous “punishment.” I thank you for the sincere advice, but if you can stand there after that comment and lightning does not strike you, maybe I will take a pass on self-flagellation.
WHEN THEY JUDGE
I saved the best for last, so most importantly: don’t judge anyone or anything, just keep your eyes closed and move on. I have, on countless occasions, seen people harassing mothers and fathers on their routines and food choices that they have come up with after years of trial and error. A lot of things that seem strange to the average individual are usually there because they make the difference of life or death, literally. I don’t know what people who take antibiotics by the handfuls for the common cold have against drugs for children with special needs. But before being outraged at me for giving medicines to my child, maybe you should be glad that you don’t have to. Most medicines for neuroatypical individuals (people whose neurological structure or function doesn’t fit what the medical community defines as ‘normal’) and children are prescribed to prevent long-term damage.
Similarly if a mom is tube-feeding her child, she is not doing it for convenience, she is doing it because her child would starve to death before being able to eat something orally. Or when a parent has a pre-schooler in diapers, it is not that they want to do this but it is probably the only thing that allows their child to have a few hours outside of his house and socialise, and your little sneer probably ruined that hard-earned outing.
Just like these parents have risen to the occasion to a choice they could never even imagine making, please stop presuming that these are unique superhumans capable of deflecting all of your negativity. We are moms and dads who are just caring for our kids like everyone else. Our choices don’t make us less or more, they just make us — regardless of how you feel about it.
The writer tweets at email@example.com
Published in Dawn, EOS, March 24th, 2019