My Gifts as a Parent with SMA

Something that I have noticed as a parent with Spinal Muscular Atrophy (SMA), is other people expressing their concern for children of a parent who has a disability.

I have come across this kind of judgement from adults and medical professionals, who should know better and I find it offensive.

I would really like to confront this premise that children of less able bodied parents are at a disadvantage. I could not disagree more. In my opinion there is so much more to offer a child then just the physical things able bodied people can do.

In this day and age your mindset and ‘using what you have’ is what’s going to deliver the competitive advantage needed in this fast-paced environment. Learning to think outside the box, learning to work hard no matter the odds, learning to be compassionate, learning that not everyone has to be the same. These things are much more important in life.

This is where we are in our element. We adapt and strategise on a daily basis living with a disability in an able bodied world. The sky’s the limit when it comes to the different perspectives and ways of thinking we can model and teach our children.

When someone is expecting a child, I have heard so many people express that their only wish was for a ‘healthy’ child. The reality is, those of us with SMA don’t see ourselves as unhealthy, or hard done by. When I look around at my fellow SMArties I see pioneers, I see athletes, I see business women, I see political activists, I see warriors.

Ironically though, I have never heard someone say to a person with a disability, ‘Imagine if you gave birth to a child that happens to be the biggest, strongest, loudest child in the playground’ …….but that is exactly what happened to me.

Last year I had given my son special permission to attend the primary school athletics carnival even though he was still in infants. Although he left the carnival with many accolades, having beaten 10 year olds for the top placings in certain events, my proudest moment of that day was when I witnessed my son being an advocate for another child.

When some older boys started laughing at another student running in a race because she had a disability and came last, he turned around and confronted these boys. He challenged them on their behaviour and questioned them on their lack of knowledge and compassion. I could have stepped in given that my son is such a dominant character but in this case l let the playground hierarchy play out by itself because my son was right.

These particular boys’ actions had nothing to do with the girl who had Cerebral Palsy sprinting in a race against able bodied students. The boys’ behaviour was only a reflection of what they had learnt and how they had been taught to see the world. And this made me realise that the way I am raising my son and teaching him to think will stay with him forever, and for me, that is what parenting is about.

All individuals have differing levels of ability and what particular skills will be useful in the gamut of child raising doesn’t come down to having the physical ability yourself to go and do boot camp of a morning. In fact it is probably a competitive advantage for your child, if you do not!

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