The high cost of ignorance

About a year ago, I read some inspiring stories from mothers with special needs children, specifically autistic children. The reporter/writer had interviewed about four mothers.

The stories were powerful and the very type that make the corners of my eyes fill up (to be honest the eyes take very little to fill up once the matter pertains to children). The story chronicled their journeys – from understanding exactly what challenged their children’s developmental stages, to rejecting the prognosis, then accepting, they told us of the structure and systems they had put in place to support the children, the daily challenges they faced and the joy the children bring them. The stories also featured the siblings of these special needs children who told us how they dealt with the challenge.

I recall sending a text message to one of the mothers featured to say the stories were so encouraging. Her response was a call to action, keep growing awareness for these challenges, in her words “understanding the challenge is a huge first step in dealing with it.”

That statement had me thinking deep. First, about how many other development challenges we are faced with on this side of the continent and didn’t know what they were about and as such didn’t know how to deal with them. What did families in my generation do with autistic children? Did they know what it was? Did they shut them off? take them from one prayer house to another, or what? How many people had inkling as to what this was at the time?

When I think carefully, I wonder how many developmental needs children we may have had in my class growing up, who may have been made to sit at the back and mentally labelled by the teacher as ‘slow,’ ‘uncooperative’ or the parents told ‘this one is not for school madam, please, try carpentry’ (back then vocational jobs were seen as secondary jobs).

One story that stayed with me and made me pay more attention to my children and those around me was one a cousin told me about her cousin (on her father’s side). She had narrated that when she started walking at about 14 months – she just walked into things; kept bumping into them – she’d walk right into a chair, or whatever was on her way.

After much grumbling about how restless and impatient a baby she was – one who ‘couldn’t sit still and wouldn’t take care to look’… an aunt who visited insisted they took her to the hospital. The doctor luckily sent her to an optician who discovered her sight was extremely poor.

My cousin and I did the ‘what ifs’ together… what if it was never detected early – would she have turned blind; what if she went on to school like that? – would she have been told ‘This one is not for academics?’

It’s no secret that in my time children with developmental challenges were ‘put away’… maybe not in hardship but away still. I’d always remember going to a house of a family friend growing up then, we were sited in the sitting room waiting to be served or something, and suddenly my eyes went to a child about my age who had been staring at me through the slit of a door that led into their rooms. I approached her and knew immediately she was being restricted from mingling, young as I was I knew something ‘wasn’t quite right’ but I didn’t know what… we both kept staring at each other until my mother – the typical Nigerian ‘mind your business mother’ cautioned me to get out of there.

Once I had the chance to play with all the children of the house (they were three that came to play) I asked them how many siblings they were and they responded saying ‘three.’ I wondered about the child I had encountered.

Months later, my parents informed me that the family had lost a sibling. When I saw one of the children I played with, I told her my parents said she lost a sibling to which she responded ‘no,’ my questioning mind asked again how many siblings she had – she was consistent with the earlier answer.

Now, looking back many years later I wonder what really went on in that house.

I know it isn’t the international week for autism, Down’s syndrome, speech developmental or any other challenge, I’m just out to celebrate everyone who has a special needs child, anyone who is lending a hand to help, everyone who’s creating awareness in one way or the other. May your light shine even brighter.

By: Nkiru Olumide-Ojo