This week I spoke to a group of university students about family life with a child who has special needs. It got me thinking about categories.
We all use categories, boxes that we place people in; young or old, married or single, gay or straight, home owner or tenant, blond or brunette, the list goes on.
But categories are very dangerous when they become directly linked with expectations. After my son was born, I remember asking the hospital councillor if I could meet with other parents, preferably parents of older children with Down Syndrome so I could get an idea of what was ahead of us. I needed to see a path, I needed to understand what a future with a child with Down Syndrome would look like. She turned to me and asked me if I would have the same request for Anna, Noah’s older sister? If I met a 15 year old girl, would I assume that Anna’s path was going to be the same? Would I assume she was going to speak the same, walk to the same beat, attend the same schools, have the same friends, the same job prospects as a 15 year old stranger? Of course I would not.
So why would I do this to my son? Why would I assume that he was going to follow exactly the same path as somebody else because he has Down Syndrome.
Of course, comparisons are unavoidable. People often stop me in the street to tell me about uncles, aunts, cousins, neighbours who have Down Syndrome and I listen with interest to how they are doing and what their lives are like. When we are off on family holidays, people will approach us in restaurants to tell us we are lucky, children with Down Syndrome are such beautiful, happy children. Or they will tell us they are amazed at how capable and charming our son is. I see teenagers or adults with Down Syndrome in the street and I will notice whether they are alone or with friends, are they on their way to work or school, are they speaking clearly? I will wonder if they have a girlfriend, do they live independently? We can’t help it, we compare despite our best intentions.
But Down Syndrome is not a box or a category that you can put a child in.
Noah is not learning from strangers who also happen to have Down Syndrome. Yes, there are similarities along the way, learnings from other people’s experiences. We benefit from research into Down Syndrome and there are proven educational methods to ensure that Noah will have the best opportunities we can give him. I have made amazing friends who are also parents of children with Down Syndrome and we are an invaluable support network for each other.
But Noah also deserves just to be Noah. He is a son, he is a brother, he is a grandson, a nephew, a cousin, a friend. He is a dog lover, a musician, a pupil, a consumer. He is much more a member of our family and our local community then he is of any other family or category. We cannot assume that he will not achieve the same as his neighbour until we let him try. We cannot expect him to integrate and be part of a team and then single him out with exceptions and get out clauses because he is special. Of course, Noah is special but so is his sister, his cousin, his friends.
In his short 4 years, Noah has already proven that he is on his own path. He will not be dictated to by expectations. He will work hard, he will fall down, he will succeed, he will fail, he will persevere and he will show determination.
It is said that a mothers job is to teach her children not to need her anymore. If I am to take this job seriously, I will not put my child in a box or a category. Like all of us, our children want the opportunity to be themselves, to be the best they can be, to be happy, to have their own lives and if they are lucky, to have lots of people to share it with. They all deserve the trust, the freedom, the love and the encouragement to achieve these goals and it is our job to give it to them.
So well written.
This is such an accurate depiction of how a diagnosis does not define an individual and this is so accurate in any area of health care. A diagnosis can help us identify supports if needed or care pathways that are empirically based but I totally agree no end that diagnosis` are just that They are boxes that do not hold the Life experiences and kearning opportunities that define or shape us as a person.
As always I love the awareness and real life exposure that your experiences offer to people and can shape the future for people working within different health areas by assisting then in becoming more analytical in moving
away from traditionalist perspectives