Friday, 22 August 2014

Don't believe everything you read.

I hadn't planned on wasting space in my blog commenting on this but it's as good a place as any to capture my thoughts on the recent furore surrounding the very unfortunate Tweet and subsequent half-arsed apology from supposed 'academic' Richard Dawkins. I won't honor it by linking to it, so if you haven't read it and want to, scamper off to Google and search away.

Right. In short, I think he's an utter twat. But I guess I can't let it sit with that.

As the parent of a child with Down's syndrome I find Dawkins' "apology" entirely unapologetic, entirely uninformed and if it can actually be possible, even worse than the original statement and here's why:

He says "I personally would go further and say that, if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare."

Whereas what he's said there is a big blob of uninformed fearmongering, herein lies the reality: having our son - not "our Down son" but our SON - has increased the sum of our happiness and those whose lives he touches tenfold. Same as any other child would. Moral dilemma? Um, no.

Let's move on.

None of us are suffering in the least, other than from having to listen to misinformed claptrap in perpetuity. In fact, we probably celebrate each day and its milestones far more than parents of a so-called 'normal' child with far loftier expectations and constant pressure to go bigger, better, faster, more. We are allowed to find joy in the miniscule. We are allowed to appreciate a slower pace. I have smelled the flowers time and again. Tell me again how this is a bad life? Thanks, but I'll take our small joys over Dawkins' lofty expectations and loftier disappointments. I'll take our contented child over a screaming tearaway. Go on and run past us. We'll have a seat and laugh at your gangly flailing limbs.

We lived slowly before he came to us. Rukai's pace is a gift. We all FIT. He is our guide, not our burden.

Rukai's future is a big vast unknown - well whaddayaknow, just like everyone else's. He will probably need help getting by in the future but that is what advance planning and education are for.

Try again, Dick.

Now, Dawkins clearly does not know that there is an absolute CHASM between both extremes of affectation from the side effects of this condition. And there hasn't been nearly enough research done to date to determine why this is. But all the general populace seems to be told about and to be aware of is the "worse case scenario" which is not the reality. We know this plainly and our son is only 2-1/2. My friends know this because I make sure I tell them this. If anything, at least I've been able to educate my friends. If that is all I can do, I have done my best.

This is what is so distressing to us and to many families who are railing about the stupidity of this man's flippant statement. It is no different than generalizing about any segment of the population. Perpetuating a lie. You cannot say "all redheads have short tempers", "all English people drink tea", "all Brazilians like soccer" and have it be truth. These are beliefs, not catch-alls. This is the plight of people with Down's syndrome and the apathy of a society which chooses to stay in the dark and to not bother learning anything about an unknown.

I thought we were supposed to learn all our lives. Sad that some choose not to, especially when they are supposed to be the big thinkers of our society.

Because of all the "worse case scenario" we were delivered ante-natally, like many new mothers of kids with DS I was terrified when Rukai was born. In fact, I wailed. I wailed at what I thought I'd "lost".

What a complete and utter ass I was.

Rukai does not sit and stare blankly at the walls.
Rukai is not unable to learn, is not lazy, is not unmotivated.
Rukai has the temper of a dragon when he is cheesed off. Although happy is his default he most certainly is not always happy. He is not happy because he has DS. He is happy because he is content, secure, autonomous, at peace.
Rukai has learned to feed himself finger food, he is working on walking, he loves to read books and play with cars. To stack blocks and to bash those blocks down. To throw a ball across the room, to chase it and throw it again. To splash around in the bathtub and to go on the swings at the park.

He is learning and doing the same things as any other child. He has some slight difficulties (hell, I'll even offer "problems") due to his condition, but they don't cause 'suffering'. They cause him to slow down and work a little harder than the average bear.

Dawkins thinks this process of working harder must surely be synonomous with suffering. Dawkins is wrong. This is called PERSEVERANCE. Grit. Determination. Effort.

People suffer from these things now? Oh woeisme, I am suffering so much from perseverance. Man alive, I am in agony from my determination. This is awful, please someone come save my ass.

Wait! Wait! This is what you academics do.


Fact remains, Rukai is just like any other child. I wish like hell people like Dawkins who don't know a goddamn thing about Down's syndrome would quit making assumptions and instead actually go spend some time with someone who has the condition. No, scratch that, spend time with a few people who have the condition, lest you form your opinion on the single person you meet.

Dear society: don't believe everything you read.

I certainly did not know this before Rukai was born but I know now that Down's syndrome is actually classified a learning disability - one with a huge range of 'side effects'. Not everyone with DS is affected by all the side effects. But parents of children with this condition are consistenly told what their kids WON'T be able to do and achieve, due largely in part to so-called academics spouting off about statistics. I don't believe in statistics, because despite the fact that science begs life to be entirely black and white, fact remains we all live in the Grey.  And science cannot change this with its desperate need to organize and order everything. Are we not all unique? No one belongs in ANY box.

Statistically, as a white American Catholic woman, I was not supposed to move to England and marry an Asian Mauritian Hindu man. But I did. What are the stats on that?

Don't believe everything you read.

I can also say I know someone who was supposed to soar in life, with a brilliant mind and endless possibility, endless opportunity growing up in a particularly affluent area. This person is now suffering the result of a lifetime of their own bad decisions and living in the bottle. That's not supposed to happen, right?  Statistically? And THAT, friends, is what true suffering looks like.

Don't believe everything you read.

Point is, if Dawkins is an academic and wants to very publicly opine about something this important to so many families, he should actually learn about it before only speaking in terms of what HE thinks and what HE believes. Because in the great grand scheme of things, what he thinks doesn't mean squat to anyone other than himself and anyone not clever enough to think up their own ideas about life and all its mysteries.

My Dad always used to remind me there are leaders and followers in this life. I know which I'd prefer to be and feel plainly sad for the rats lining up behind Dawkins' pipe. Open your other eye, people. And if you can't face forming your own opinions, I'm sure there are plenty of other atheists to follow - all plenty easy to find in this wired up age.

I am very much pro choice, but will leave you with this: I haven't really seen it mentioned anywhere, but sometimes those pre-natal tests are wrong and the child is born with no medical condition whatsoever. Where is the morality in terminating that pregnancy?

You started a fire, Dick. Perhaps you should throw the remainder of your arrogant opinions on top.

Monday, 4 August 2014

This place is New.

I'm sat in what is still a new house, empty save for me and a few wayward silverfish. Lulled by the hum of a cooker hood watching over a pot of lentils that doesn't want to finish boiling, a small fan creaking cool air across a still-unfamiliar living room, a humming dehumidifier blotting the moisture out of the air. When I wonder if it's working, it deposits a slurpy dribbly splashy thing into the reservoir and I remember that sound from our old leaky kitchen tap. Before we left that place and all it's black memories in the past.

This place is new. This life is new. We are new, fresh, beginning again.

Nine days to 2-1/2. A lifetime from that Birth Day. A world away from how can we do this? and slap bang in the midst of HERE'S how we do this. We are always on the verge: of succeeding, of learning, of doing, and with each trip out and into the rest of the world, Rukai succeeds. Rukai learns. Rukai does.

This place is new.

New life has bloomed out of big noise. And my God, life has been loud. Deafening. Life has been, for all intents and purposes, borderline unbearable. These past few months had us all teetering on the precipice of this-could-go-either-way-so-close-your-eyes-jump-and-hope-for-the-best. We held each other and jumped. And here we are flying again.

This place is new.

I cannot speak for my husband- nor have I ever-but I have reached this place by shedding nearly all of the old one. That place was like a frozen cocoon, like the Iron Mask in that Leo DiCaprio film. He wore the damn thing so long he grew to love it. And then it was peeled back and clamped on to the rightful wearer and he was free and he no longer needed the mask.

I call that mask Denial. That mask is a dangerous piece of work - it fits and caresses and leads to false hopes. But I wore it. And then, here this butterfly comes out and it flies, and there are massive wings and there is realization and belief and reality.

This place is new.

Now, this Denial isn't that Rukai has Down's syndrome. It isn't that his development is delayed. It isn't anything that has anything directly to do with our son. This Denial has always been that 'The System' and 'Society' and everyone else 'Out There' will just let us live. Here. In The New.

But they won't. They won't and I hate it. I still hate it.

Hate? Why? (But this place is NEW.)

This place is new because I have come to accept it. I accept that it IS. I accept that it probably will not change.

But I do not have to back down and let it roll over us. Here in this new place, I have now learned how to Begin.

I have now learned that this life is not going to be our own, despite what we want and have tried to protect. There is a label.

I have now learned that this life will be full of intrusion and interference and forms and paperwork and people-who-think-they-know-our-son-better-than-we-do. There is a label.

I have now learned this, and I have come to accept it. I accept that there is a label.

But friends of the medical persuasion, of the education system, allow me to firmly invite you to understand that although there is a label, you are in no way, shape or form going to use it to box in our son when we have merely asked your help in ensuring he seeks his heights. The quicker you understand this, the better we'll get along.

Take your label. Place it in your book of boxes to tick. Set it down on the table and look Rukai in the eye. Look ME in the eye. Take your label, for your label may not take our son.

I spoke the other day to friends about the weight of 'extra'. Introduce special needs to the search for a nursery and it is no longer merely about 'can we afford it, what are the hours, is it good enough, will he be safe'. It is that, plus 'is mainstream the right decision, should we even consider special needs nursery, will he be allowed to mix with his peers, will it cost more because he needs more help, how much more help does he need, will they actually provide it, if it costs more can we get financial assistance, will his peers accept or bully him, at what point will he really start to fall behind, which forms do I have to fill out, where do I find the forms, are there really 48 pages on this form, who do we need to speak with, who will lead us astray?' In my heart of hearts, I fear for him, so much sometimes it renders me entirely unable to think about anything else. The worry is a personal Armageddon.

Rukai will be assessed and they will tell us things we don't want to hear. They will tell us things we don't want to hear because we have been tucked safely away in that place called Denial, where we have done a fine job of raising our son to develop at a pace called 'Rukai' and that development is just fine for us and for our expectations. But those people will demand they have a chance to push him harder, to make him catch up and lo and behold there we are again on that 'what is he catching up to?' choo choo.

Damn it, can't they just let him grow?
Can't they ask us what we THINK?
What we BELIEVE?
What we WANT?
For him? For our son?

Please if there is a higher power, let them ASK. Let them bloody ASK. Do not let them try to TAKE because this continues to not register in my allow list and things will go back south on the express train faster than you can say 'it's his life and you do not own him'.

We are in this new place, and we are yet to meet those people but it is looming. It is looming and I have never been so nervous to meet someone in my life. More so than getting on an airplane and flying 4000 miles to meet for the first time the man who would become my husband. More so than meeting Rukai himself on that cold February afternoon that should have been all Dream and those people tried to turn straight into Nightmare.

Sorry folks, we hung on to Dream. And you are no longer seated in the audience.

Because this place is new.

I have never been so nervous because I want so desperately for them to respect us as our son's parents, his caregivers. To work with us and agree the course, not to ignore our wishes and try to take ownership of our son's wellbeing. Assign a label and suddenly parents are no longer capable of making the right decisions for the health, wellbeing and protection of their own child? Ludicrous.

I no longer want to be constantly fighting off intrusion and patronization. I do not express such arrogance in my own work so I simply cannot fathom why others do. I want so desperately for them to understand that Rukai is a person and not a diagnosis. He is not a label, and we are not uninformed and unable to act in his best interests. The others whom we left behind could not register that no, they did NOT know better.

But this place is NEW.
This place is called HOPE.

We are bum shuffling and furniture cruising and stair climbing our way into tomorrow. We have stepped into our armor and raised our shields. We have sheathed our swords for now but believe you me, if invited we will do the necessary battle to protect our son. His right to be heard. His right to BE.

We have left the tick boxes behind.
Show us your promise.
Show us your partnership.
Show us your relevance.
Show us your support.
Show us your thoughts about tomorrow.
Open your ears.
Open your hearts.

Know him. Respect him.

He is Rukai.