Our boy is not like the public poster-face of Down’s Syndrome. He won’t be sitting GSCEs when he leaves school, he’s unlikely ever to be a model, run his own business, perform in a play, or a in TV show. I doubt if any organisation aiming to raise positive awareness of Down’s Syndrome would want to feature us as part of their publicity campaign.
This is not me underestimating him, or absorbing or giving in to society’s low expectations of people with Down’s Syndrome. This is me being hand-on-heart honest and realistic about how he is right now. This is me accepting how he is, accepting him for who he is.
When he was born, I had all kinds of ambitions and plans for him: he would go to a mainstream school, he would grow up to have a job, find love, maybe get married, have his own independent (or nearly so) life.
We would equip him to do all these things.
I read to him from the moment he was born, even in the NICU. I brought a pushchair with a seat that could be turned to face me so that I could sign to him all the time, even when out and about. I brazened out the story time sessions at the local library, took him to Tumble Tots. I enrolled him in a mainstream nursery, and in a specialist provider too, to give him a developmental ‘leg-up’ before starting school, walked miles to take him to physio and speech therapy.
But even before he reached school age it became apparent that he would be totally lost and overwhelmed in a mainstream school, certainly where we live: schools and classes tend to be large here and inclusion is generally poor. The ones I approached had neither the understanding, the infrastructure, nor the will to even keep him physically safe. There are, however, some excellent specialist schools, and he has thrived in this supportive environment.
However increased understanding and increased maturity have not yet brought about an increased awareness of danger, or an increased willingness to follow instructions, rules, and procedures laid down by others, no matter how necessary or important.
Nor have they brought about a decrease in his tendency to abscond or quietly sneak off and wander away.
They have not brought about an increased awareness of the personal boundaries of others, nor the rules and expectations governing appropriate behaviour.
At the moment, I honestly do not know if he will ever be able to fit into any kind of workplace, or, indeed, if it will be possible for any employer to actually keep him safe.
What the passage of time has brought about is an increase in the self-stimulating behaviour or ‘stereotypies’: the rocking and pacing, the random whole-body jerks and sudden vocalisations. When out and about we are aware that others find these behaviours distracting and even alarming. We are starting to get some funny looks which I studiously ignore.
I ignore these looks because one thing that has not changed through all these years of having to adjust my hopes, ambitions, and expectations to fit our reality is the love I feel for my son and the pride I have in him.
These are unconditional and do not depend on what other people think of him or his behaviour, they do not depend on his level of ability, nor on how close he can come to being like a typical person (I roundly reject notions of ‘normality’, throw them over my shoulder in disgust without a backward glance). I love him for who he is, I am proud of who he is, and I will look anyone in the eye and tell them so.