Monday, 6 October 2014

Down syndrome Awareness Month

So it's October again - how did that happen??

Around the world in October it's Down syndrome awareness month. This means that in Japan, The Netherlands and The Carribbean, people are blogging away about Down syndrome.

Why, indeed?

Because each one of these people, namely parents of children with Down syndrome, feels that they were lied to. They need to let all the other potential parents of children with Down syndrome out there know that the lies are false.

No-one wants to judge, or no-one that I've seen. And certainly no-one would ever feel anything but sadness and love for a mother who has been convinced that aborting her foetus who has Down syndrome is the better option, and this purely because we know what they're missing, and I suspect they do too.

We talk of rainbows and unicorns. This is what we call it when we go on and on about how amazing our child with 'Down syndrome' is, or how much better life is since our child with Trisomy 21 came along. It must seem to everyone else that their otherwise normal and sensible friend/family member has turned delusional and feels it necessary to lie to everyone, painting the world rose-coloured.

I guess it's like the thing that happens to the first couple in a group of friends to have children. Suddenly they don't come out anymore, they don't sleep in anymore, they let themselves go, they don't do anything 'fun' anymore. They stop swearing and getting drunk and going to clubs, and they spend their whole day surrounded by urine, faeces and vomit, yet they tell you it's amazing and wonderful and you should definitely have kids.

You think they're a little bit sleep-deprived and it'll wear off.

It never wears off.

It's a change in viewpoint. It's a new way of life. It's living for others instead of yourselves and it expands your entire life, almost adding a fifth dimension.

The same thing happens with a child with Trisomy 21.  It may also happen with other special needs categories, but I have no experience with those, although I do have to say that the parents I know who have dealt with special needs are some of the most grounded and understanding people I know, with the odd exception.

There are aspects to special needs, and this includes terminally ill children too, that make you push even more aside. You let go of any shred of insecurity, you let go of any self-doubt and you pull together tighter with your nearest and dearest and make every second count. You also realise the value of a casserole arriving, or a childminding or playdate offer, or a hospital visit. You make time to do these things for others and to help wherever you can with others' difficulties since you realise how much you are needed and how much you can actually offer in terms of real, tangible help.

And if you ever had any qualms about walking around your child's ward in your pyjamas, unshowered, looking like you've been hit by a truck, you don't anymore. You get real. Super real. You don't apologise anymore for things that don't matter, like walking around in your child's ward in your pyjamas, unshowered, looking like you've been hit by a truck.

So not only as parents do you get to experience a whole hidden level in the game, as a special needs parent you also find out the cheats, that the things the medical people might tell you when they're pushing you to terminate are actually untrue. They might have been true 50 years ago, but that was when smallpox and polio were still around and microsurgery didn't exist. IVF didn't exist. Organ transplants were unheard of. This was a completely different time.

Now we have resources and we have precedents.
Finishing High School? Done.
Voted Homecoming King and Queen? Done.
Finishing University? Done.
Running a successful business? Done.
Swimming the English Channel? Done.
Starting your own foundation and touring as a guest speaker? Done.
Getting your Driver's License? Done.
Getting married? Done.
Living Independently? Done.
Having a family? Done.
Being Lord Mayor? Done.
Star in your own television series? Done.
Being a super buff male model? Done.

This is not an exhaustive list (there are several successful actors out there who don't have their own series, for instance, and I haven't included the links because I'm tired and they're mostly in my last October post of links.  These things have not all been achieved by one person, but some have been achieved by some people and some by others. I have achieved about 6 things on this list. I know adults in my life who have achieved 2 or 3 or more. I'll never be a super-buff male model, more's the pity. I also fear I'll never swim the English Channel.

It is true that to achieve these things, your child will probably have to work harder than his or her siblings would to achieve the same. Maybe in the early days, establishing brain connections or maybe in later schooling or adulthood. Maybe all through his or her life, he'll be working hard. Who said that was such a bad thing? My husband's Nana always said that her daughter with Down syndrome was never any trouble and she loved having her around, when people implied that she was somehow a drain on her energies. Watching the ABC series, The Dreamhouse, recently it was clear also that the mothers of the two adults with Trisomy 21 who lived in the house were very happy to have their children at home, but realised that it was limiting them by keeping them there.

My father was a train driver. He never had a tertiary qualification. Spending his day in a room didn't appeal to him (to the eternal chagrin of his father, who had landed him an excellent job as a clerk, so he didn't have to work in the railways…..) and tertiary education certainly wasn't necessary in the '50s. I might never have finished university had I not decided to go back in my late 20s, and my husband is now nearly finished his first proper tertiary qualification at 35. I have friends who, at nearly 40, are yet unmarried. I have friends who are childless at the same age. My own (university educated) mother didn't drive for most of my life, after losing her confidence at the wheel before I was born. However, she did enjoy bushwalking, despite having one leg about half a foot shorter than the other. And she got back behind the wheel again after my father died, rather than relinquish her independence. Most people I know have never run a business. I was never voted anything remotely good at the end of High School, nor was anyone I know. Most people I know finished High School, but not all. In fact, some of the cleverest people I know did not finish high school at all.

It may seem, to those who follow the prescribed route, that most people go to school, go to university, get a job in their chosen field, move out of home, get married, have a family and work til retirement. I used to think that this was what everyone did! It so isn't. Actually only a small percentage of humanity does this. Having realised this, I don't expect any of my children to do this. I hope for their sake that they're happy and contributing to society. My parents used to say that they didn't care what we did in life so long as we were happy, and we weren't doing anything illegal. I think that's fair.
So why would we be so incredibly worried about someone who may or may not tick all the boxes on the above list?

If we put this in perspective, we're not talking about people who can't express their wants, likes and dislikes. We're not talking about people who can't participate in a discussion about whatever's going on in the news or the football or on X-Factor. We're not talking about people who can't hold down a job or boil a kettle or cook a meal or keep a house or catch the train. We're not talking about people who need a person with them 24/7 for their own safety, nourishment and hygiene.

We're talking about people who have dreams and goals and who have a very real chance of achieving them, especially if their parents are willing to put in the effort to help them grow when they need it. Would you wish away your child with a speech impediment? Would you wish away your child with dyslexia?

Would you wish away your child who develops a drug addiction? Would you wish away your child who takes up smoking and drinking for a living by 20? These are self-inflicted and I'll wager your average adult with Trisomy 21 could best in an IQ test, a job interview and a soccer match either of these types.

Having lived through a child with cancer, having lived through a child with heart issues, it was hard on us at times, but it hasn't killed us. We are here, we are fine. Jacinta is more than fine. She's brilliant. Just this week she's been trying to crawl and standing up and taking steps with help. She's certainly not moping around about the cancer or the heart stuff. She's getting in there and doing it. Our family is very appreciative of the times we're together. Sure, our last hospital stay resulted in my daughter losing her sneakers because I wasn't there to monitor them and we had a drama re school shoes on the first day of term, but if that's the worst problem you've ever had, you need some bigger ones.

I was just now reading a discussion board on Babycenter with parents whose foetuses had diagnoses of severe heart defects. Now Jacinta had severe heart defects, but not anything that would mean needing a transplant or anything like that. Still, these parents were facing the possibility of needing one or more heart surgeries and the possibility that their child might die as a result of these physical illnesses. I read on as the person who started the thread posted that she had decided to terminate because she felt that the above scenario would destroy her family.

We've done all that. We've had the surgery for the heart and surgery for the leukaemia and await still more surgery for the heart. It's not a fun thing to look forward to and it wasn't a fun thing to experience. It really wasn't fun to be sitting there long after all the other parents had gone to see their children post-surgery when theirs had been done in the afternoon and mine had been in since 8am, wondering if something had suddenly gone wrong and I'd have the solemn-looking surgeon come out and sit me down to tell me the worst possible news.

But I'd never for a second consider giving up Jacinta to give that up. I'd definitely accept the magic side-effect-free pill that removes the extra chromosome and gives her a body she can easily use, because no-one really wants to have to work harder. We all like to be given an option. But I know, as all grounded people know, that adversity builds character. Lessons learned early make for an easier ride later. And although I'm a firm believer that you create your own success or failure, still, you get what you get. You start with a hand and you play that hand. And I know that your win is so much the sweeter when you start with a crap hand.

My heart breaks for the mothers on that thread who terminated and then felt the backlash of loss and guilt, like the mother who originally posed the question. My heart breaks for the mothers all over the internet who were pressured by their medical providers and even their partners to terminate and did, and regret their decision every day of their lives. I mentioned previously that I googled for interest's sake 'I regret keeping my baby with Down syndrome'. I searched through pages and pages of results. The only regretful posts were from mothers who had terminated.

Rainbows and unicorns. They could have had rainbows and unicorns. And they know it.

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