The Cobblestone Path – raising a child with a disability

 

What does it mean to raise a child with special needs?

 

The short answer is that it is a lot of hard work. But you knew that already anyway. For me, it has involved a lot of soul searching, career plans that have had to change, aspirations forgotten. Let’s not beat about the bush. We all know that in the vast majority of cases the onus is on the mother to change her life and take on responsibilities of caring for children, and in the case of special needs, doubly so.

You may think that I am fortunate in that the nature of my work means that I can work from home. However, in reality, it is next to impossible to work while caring for my son. I spent the first three years of his life taking him to appointments, to physiotherapy, to occupational therapy, to see the paediatric psychiatrist, to see the neurologist, to the mental health centre, and so on. I took advice from the physiotherapist and performed the exercises with my son myself every day. It was a lot of hard work, and it affected me physically as well as mentally. I started to lose a lot of weight, and people would congratulate me and ask me if I had been on a diet and what my secret was – something which I found quite ridiculous, as I was already thin to begin with, and losing weight was starting to make me look ill. What does this say about our society, I wondered at times, that here I am showing the signs of the strain taking its toll and affecting my health, and all people can do is comment on how nice it is for me to get even thinner! It isn’t nice, and it made me worry about my own health too, on top of all the worry about my son!

Perhaps you are wondering where my son’s father is in all of this. Well, he was there. But he went out to work every day, and caring for my son, doing his physiotherapy, was not something that could just wait until the evenings. Of necessity, I did the lion’s share. I thought deeply about this. Was this unfeminist of me? Should I have tried to arrange our lives differently to give my husband a greater share of the care work, and myself more chance at employment? No, I concluded, it was simply the best arrangement for us. Simple biology decided matters in the beginning: my husband could not breastfeed the children. Far better for me to take the time I needed with them, and for him to enable that by continuing to work as normal.

So what about now? My youngest son – I have two other children who do not have any special needs – has now started school. You might think that this is an opportunity for me to breathe a sigh of relief and relax a bit. You would be wrong. The first few months presented a constant string of problems – dealing with special needs in a school environment is not a simple matter, even when the child is enrolled in a special integration unit. I went back and forth from the school, I took in things from home to help my son settle in, I donated books and toys to the integration unit, I made suggestions to the teacher, who clearly didn’t know what to do with my son. I took him to educational assessment committees, to specialists, and at every turn I had to hear that I was making a mistake, that I did not have my son’s best interests at heart, that I was doing it all wrong. I researched matters myself and went against the advice of the professionals to do what I thought best for my son, both in his daily life at home and with regards to his education.

Not once has anyone suggested to my husband that he is doing it wrong. Not once has he been told that he is making a mistake. In fact, on one occasion, when we went to the educational assessment committee, the chairperson turned to my husband, after I had explained our position, and said, right in front of me: “Do you really agree with her on this? Perhaps you see it differently?” I had already made it clear when I was speaking that we had agreed on those points together. Conversely, when my husband did the talking, no one questioned what he had to say.

So, I have told you about the hard work and the appointments, the insults from professionals who are supposed to be helping you. But that is not all life is when bringing up a child with special needs. It is also about laughing and having fun with my son, about playing with him, teaching him nursery rhymes, singing songs to him, all the normal things you do with your children. He may have special needs, but he is still just a little boy who wants to play! I may never see him write his own name, or even hear him say it, but he has a beautiful smile that melts my heart, his infectious giggle makes me laugh too, and seeing him wave his arms in time to music, especially after all the physiotherapy that has got him to this stage, brings tears to my eyes. He plays pretend games and likes to throw a ball or play on a swing, laughing away as he swings to and fro.

That is why I call it a cobblestone path – it is a bumpy ride, but the road goes on, we are not standing still.

I don’t deny that it is hard work. I will not claim that it is all plain sailing. But it has its rewards, and I do not begrudge a moment of it.

 

The Cobblestone Path

The fiddler takes a bow before performing,

She dances onto the cobbles,

Drawing the bow lightly over the strings.

She flits from pebble to pebble, playing gently.

A soft melody hums in our ears and we lean towards it.

With quick strokes, the fiddler plays a discordant sound,

But we are strangely drawn in,

Onto the unsure footing of the cobbles.

The music beckons us with its unevenness,

We follow it over the rough stones.

The fiddler plays faster now, a wildness to her tune,

And dances over the stones before us,

Leading us ever forward,

To tantalising promises of more,

Sounds of sweet music ringing in our ears,

While we stumble on the cobbles in her wake.