Additional Needs
I don’t want the care. I need it.
by Sharon F
on 29th April, 2024
Now We Are Ten - What Next?
November 2018 marks a personal milestone for us as a family – Our Freddie, who has Down’s Syndrome, celebrates his tenth birthday.
So, this month I have written a series of three related posts reflecting on this: the first post is a letter from me to Freddie in which I tell him about his early days and compare them to where we are now.
The second is an open letter to the obstetrician who looked after me when I was pregnant with him, in which I share with her some of the things I have learned during my first decade of ‘lived experience’ as the mum of a child with Down’s Syndrome.
The third post looks forward, towards what the next ten years may, or may not, bring us.
I have been mum to a child with Down’s Syndrome for ten years.
Like most families on this milestone anniversary, we have done the presents, the cards with badges, the cake and the balloons. I have enjoyed looking back over your first decade of Freddie’s life, though it has also made me very emotional.
We have been lucky. After a very rocky start the road has gradually got smoother and smoother with barely a bump along the way.
Long may that continue.
Looking forward to what the next ten years may bring us -- as he progresses from being a child to being a young adult – is not so easy, and I dare not examine too closely the emotions that are brewing in my subconscious.
Most families imagining their child’s second decade will harbour a set of broadly similar expectations – educational attainment, employment or university, maybe flying the nest, first boyfriend or girlfriend and all the emotional roller-coaster that young relationships entail – and if any of these expectations is not fulfilled they might well feel disappointed or even cheated.
But parents like me cannot look forward with any confidence to these particular milestones. Dependent upon our children’s particular needs, characteristics and abilities, some of them may not be realistic, others might be possible, in an ideal, more open-minded and inclusive world.
But we are a long way from living that particular dream.
I began Freddie’s first decade feeling optimistic, thinking that the world was more accepting than ever before of disabled people; the 2012 Paralympics was a high point of positivity.
But, of course, people with learning disability are viewed very differently to glamorous young para-athletes, and, worryingly, over the past ten years I have become aware of a deterioration in attitudes to those who have, or are perceived to have, intellectual disability.
In some cases even physically disabled people are guilty of this kind of ableism, -- citing their right to equality on the grounds that their particular disability doesn’t mean that they’re ‘not all there in the head.’
I cannot tell you how much this dismays me – no, it’s not just dismay: it makes me really, really, angry. A person’s right to equal treatment rests only on the fact that they are a human being.
It seems like prejudice against learning disability is the last refuge of the bigot.
I’m not scared of much, but the current ugly mood towards the vulnerable and disenfranchised that seems to be creeping over the world does have me rattled. But on an individual, day-to-day level I don’t dwell on it too much.
We haven’t met with much negativity in our personal lives so far, and anyway, I’ve always been a scrapper with a tongue like a chainsaw. It’s not a nice aspect of my personality, but it can be a useful trait to have in reserve should you ever need it. My current, overriding concern is the imminent transition to high school. Freddie is now in Year 5.
One thing that we know for certain is that Freddie will go to a specialist high school.
Once upon a time we had hoped that he would go to mainstream school, at least for his primary education. But that proved to be the worst option locally, so we enrolled Freddie in a specialist primary that has a good reputation and good links to the wider community, and where all his needs would be fully supported by the school environment.
It has worked out well for us -- because he doesn’t need to have a 1:1 there he has learned to stand on his own two feet in a small group, he is happy and making good progress. I wish he could stay at the same school for the whole of his education, because I don’t want to rock the boat.
But, of course, he can’t stay there: the transition to another school must happen, and it will be very disruptive for him, he hates change.
At the very least it will cause a temporary deterioration in his behaviour, if the transition is traumatic, it could even trigger regression. I can’t bear to think of Freddie being distressed or traumatised, or of him losing his hard-won skills.
I had better stop putting it off and start researching, and making overtures to, the two schools I have to choose between, so that I can make a decision, to enable his current school to begin to prepare him for the transition as soon as possible.
We hope it will be possible for Freddie to continue in education until he is twenty-five. Beyond that I dare not look.
If I could freeze time right now, I would.
But children with Down’s Syndrome do not remain children forever. They grow up, and have the same hopes, desires and ambitions as any other adult. What Freddie’s goals will be, and how far it will be possible for him to achieve them, we do not yet know.
But if there is one gift he has that has rubbed off on me, it is the tendency to live in the moment. From now on I will try to look no further forward than our bedtime snuggle.
The past is gone, the future is not guaranteed – the present moment is really all we have.
