Additional Needs

Having A Child With Down’s Syndrome DID Change My Life

Posted by 47 Stripey Socks on 11th October 2016 Additional Needs, Disabilities

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When I expressed reluctance to submit to invasive testing, she mistakenly assumed that I was blindly placing my faith in the one-in-twelve chance that he didn’t have it.

She was keen to stress that I must find out for certain, because if I went ahead and it turned out that he did have it, then my life would be ruined, devastated; it would never be the same again.

Well, she was right, my life did change:

I started to get a lot of attention in the street; random people would come up to me, in one case a lady ran out of a shop after me.

Surprisingly, given what I had been led to expect, they weren’t rude, pitying or hostile.

They just wanted to talk to me about Freddie, they would admire him, talk to him, then tell me all about someone they knew, usually a family member, who had Down’s Syndrome.

These conversations were always positive and joyful.

One very elderly man’s eyes swam with tears as he stroked Freddie’s cheek and talked about, ‘our Alan’.

They were not tears for a hard and miserable life, they were tears for a beloved brother, now passed away, and much missed.

In the early days there were lots of appointments and therapies.

The combined SALT and physio session at the local Child Development Centre was like a mother-and-toddler group, but without the bitchy mum cliques that I had always found so off-putting.

Competitive mothering was replaced by mutual support and empathy.

It taught me a lot about how life should be, as opposed to how it often is these days.

Freddie attended two sessions a week at a, ‘nursery’, for children with special needs and disabilities, to give him a bit of a developmental, ‘leg-up’.

The staff, though, didn’t just work with the children for a couple of hours; it was their policy to work with and support the whole family.

I loved the place so much that I still wasn’t ready to leave when Freddie did.

So I volunteered to help in the playroom while he was at school; later, I became a Trustee (basically, she says, polishing fingernails on jumper, a company director).

The change from volunteer to Trustee came about because of another change, which meant I wasn’t available in the day anymore.

Freddie had presented me with many challenges; I had no choice other than to simply get on with it.

Much of the time it was my mental attitude that was challenged, and slowly I discovered that I was a lot stronger and smarter than anyone had given me credit for.

Over a few short years slowly and subtly metamorphosed from, ‘I can’t’, to, ‘I can’.

Others still doubt me sometimes; the difference is I no longer doubt myself.

Once Freddie was settled at school I enrolled on a university degree course (thirty years after leaving formal education at the age of 16).

I chose Creative Writing – I’ve always been a hobby writer, and made up stories in my head before I could use a pencil – because I felt instinctively that this was something I could do, and be happy doing.

It also occurred to me that if I could get some sort of formal credentials that demonstrated that I was a committed and capable writer, I might be able to work from home as a freelancer.

That way I could earn a bit of money, but always be here when Freddie needed me, too.

I graduated with a First, was awarded the prize for Outstanding Acheivement, and am now beginning to get work published: all whilst living a life that was supposedly so bleak and difficult that it was the very antithesis of personal growth and joy.

Being at university got me onto social media, a thing I’d previously resisted.

Initially I used it just to keep up with things going on in my various classes – each one had its own Facebook group – but then I started making contact with old friends.

There’s no support group for parents near to where I live, but I found groups online, and was able to build a supportive community around myself.

I started blogging, and now I’m sniffing around on the fringes of campaigning.

Neither myself nor Daddy enjoy being told what we can and can’t do, so another upshot of the often-asserted assumption that we cannot enjoy good quality of life is that we stubbornly decided we were jolly well going to!

We’d never been abroad together, as a couple: in the past we felt we couldn’t justify the expense of a week or two in the sun when there was retirement and the inevitable ‘rainy day’ to be saved for.

We suddenly realised that this mythical rainy day does not necessarily come as one huge, catastrophic storm, but often as occasional inconvenient showers, with the odd squall.

We were getting soaked in the drizzle whilst saving up to build an ark for a flood that might never come; it wouldn’t kill us to take a little of our ark fund and buy wellies and umbrellas, if the day of reckoning ever came the boat would just have fewer cushions, that’s all.

So, we’ve started taking foreign holidays.

It takes a bit more organisation and forethought, that’s true, but it’s not only do-able, it’s enjoyable. Freddie loves it. Spurred on by the need to also keep one eye on the future, though, we’ve done something else that we always wanted to do, but talked ourselves out of through lack of confidence.

We bought a property to rent out.

We’re people of modest means, we had to scrape and borrow to buy a wreck of a place, and Daddy renovated it himself evenings and weekends.

The rent paid by the tenants covers the loan, and it will be something for our children to fall back on when we’re gone.

We plan to do it again as soon as we can; we aim to get at least one house for each of our children.

The doctor was right: having Freddie DID change everything.

Having Freddie has challenged everything about the way I live and the way I think.

Having Freddie has woken me up, like the Prince woke Sleeping Beauty. When I chose to have Freddie, I really did choose LIFE.