Friday, 5 October 2018

This is what we are up against.

This week, a wonderful and effervescent young woman who is absolutely thriving, has her own flat, a job, a terrific boyfriend and is loving her live (oh and who also has Ds) had been asked to participate in a radio interview to talk about the myths around Ds. The producer also saw fit to include in the segment the head of an organisation which actively promotes prenatal testing and abortion services.

The producers believed so strongly in the myth that people with Down syndrome are just 'always happy' and lack even the most basic understanding of the world around them that they aligned these two human beings on a chat show. For ratings. It's the bloody Hunger Games.

It is typical for these types of programmes to include guests who will counterpoint one another but I ask you whether you think it's in any way acceptable to position someone - with or without a learning disability - who is prepared to talk about the positives in her world, alongside another who believes she should not even exist (and has made her feelings clear time and time again under the guise of 'choice'). It is cruel, it is inhumane, it is discriminatory and it is absolutely typical of society today. I am 100% pro-informed choice but when it comes to Ds, misinformation is sadly the rule and not the exception, perpetuated by professionals either too lazy to learn the truth or too biased to see the possibility of human beings who happen to be different. I'm like a broken record now but God damn it, difference is not disaster. It's just not.

False information about Ds feeds the most base level of all fears, which for women who choose the termination route after antenatal diagnosis is not that 'the child will suffer' it is that they will. It is from a purely selfish perspective and anyone who tells you other than that is lying. I call it out because it's actually really simple to admit the reason behind a choice you make. Most who make this choice will not admit the real reason. Perhaps they cannot actually process it, but I can assure you when the only reason for termination of a pregnancy is the probability that a child may have Ds it's not being done to spare the child's suffering.

There is little emotional activity I've ever experienced stronger than maternal instinct. It lands hard and it takes a galactic amount of fearmongering to crack it. But lies and myths are made of titanium and the hammer fashioned from them strikes a hell of a blow. Crack the armor and you either force the hand or provide a tailor-made excuse to take the easy exit from a 'different' future. 'Get rid of this one and try again.' Ah ok. Thank you for saving me. 

This next may be distasteful for some but it is the truth, it is out there, and it infuriates me. I will not mollycoddle these people any longer because they don't give a toss about my feelings. And far less about Rukai's.

They terminate the pregnancy based on a prediction and often a whole lot of false information, and then go off to weep about and announce their sorrow around the child they 'lost to Down syndrome'. They may infuse their offloading of guilt with a 'Mummy loves you my darling.'

No. No you didn't. That's the thing. You didn't, because someone's fearmongering made sure of it. They took your love off you and binned it with the surgical gloves. That thing you think is love is actually regret.

This is what we are up against.

These people then look at families like mine and without knowing us from a bar of soap assume that our lives must be terrible and painful and sorrowful and any number of negatives, simply due to our son having Ds. But they should ask our friends at mainstream primary who would very politely inform them of their error. I've got a fair few struggles and difficulties in my life but Rukai is not one of them. Unless he's being insolent, or refusing to go to bed, or not doing his homework... Yes he's delayed in lots of things, but lo and behold there is a ready-made tool that can help me cope - it's called patience.

But the fact remains that pregnant women don't want a different path than they are expecting. They want to live the dream. They want to step into the parenting story they've heard of and have seen before them for years on end. And unless their world includes a child with a disabilty, that pregnancy story does NOT include delivering a child with a disability. That scares the hell out of them and makes them listen to the loudest voice in the room (hint: usually the guy in a white coat carrying a clipboard full of tick boxes). They don't want to look at the truth, so readily available. Real lives. Real people. Real stories. Like these. In many cases they don't want to even see someone out in public with Ds because they are the embodiment of all those fears and misinformation. They represent the life that terrifies them. Why? Because they don't know about it. They haven't been exposed to it, learned about it, understood similarities instead of focusing on differences. Accepting the differences as variation in human existence. Nothing more. Nothing to fear. Nothing to flee.

I am so sad that I was so afraid before Rukai was born. Maybe more sad now than angry. That time can't be recovered, but I sure can remember it like it was yesterday and advise anyone who is out there feeling the same now to take those feelings and despite how afraid you are and how painful it may be to face your very deepest maternal fear - you go on and pack them safely aside and go learn a bit more. Yes, it is a primal conflict down to your very marrow about whether or not you think you can handle having a child with a disability. Yes it's a more challenging life than it would have been otherwise. But that love? That love is the same. That journey is of a mother and child and life behind and today and to come. It's just like any other. Don't let other people scare you into making a decision you may regret later. But if you make that decision, own it. Own it and know why you made it. You'll certainly have a loss but it's not actually the one you think you've had.

I didn't think I could handle it either, and to this day relieved I didn't know in advance because I could've been in those shoes of regret, never learning a bit, never knowing the difference. Never knowing this love. But our delay in conceiving saved us that regret. He was joining us no matter what. There wasn't any other choice. But it's soul destroying to think of how easily I could have lost him. It breaks me some days. Not life with him but imagining a life without.

And here I am, mother of this gift to the world, rolling onward to age 7. Bettering myself by rolling onward to marathon 8. All after he arrived. All after he made me want to be a better person. All after he gifted me with the honour of being his mum and the responsibility to pay attention and listen. To shout to the rooftops with the same honesty and sincerity he delivers every minute of every day. There is no bullshit in him nor me. I have a job to do and here I am doing it. That is all.

Should he have to fight for the right to exist? No. No, I don't think he should.

The reason Ds is targeted so fiercely is because it's so easy to identify. It's that simple.

This is what we are up against.

Rukai is not the problem in my world. THIS is.

#breakthemyths #wouldntchangeathing

Saturday, 28 July 2018

How to create a Tiger Mom without even trying.

I was very proud to be able to present at the 13th World Down Syndrome Congress this past week in Glasgow. As anyone who's read this blog from the off already knows, we had a ridiculously rocky beginning which set me up for many years of wasted anger and frustration. It is only now after six of those years have gone that I am able to step back and see precisely where that anger began, and better still, how professionals can prevent it in the future. It is my duty as a parent and a Down Syndrome advocate to share it as widely as I can to help ensure that it doesn't happen to anyone again, so I'd ask if it reaches you on any level please share. 

The more we speak out, the louder we become, and education is everything. To all you Tiger Parents out there, keep on roaring.

In unity,
Maxine 


It is important to start at the beginning. And this was ours (please watch before you continue reading...)

https://www.facebook.com/downinfrontplease/videos/1356010927865609/

Ok, got through it? Here's MY apology:


My apologies for that depressing beginning but that's precisely how our family’s beginning was – there was no advance warning, there was only emotional pain from being bombarded with so much negative noise for so long. It began from the first antenatal visit when the midwife refused my husband access to the meeting, then focused on my ‘advanced maternal age’ and with it the so-called ‘risk’ of having a child with some type of chromosomal abnormality. Add to it the likelihood of developing gestational diabetes for the duration and you can imagine how much worse things became as the time went on.


The gestational diabetes indeed reared its ugly head and during some 19 hospital appointments I was made to feel progressively more afraid that I’d inadvertently do something to hurt my son. Their total lack of bedside manner was astonishing and frightened the life out of me.

It also made me very angry, to the point I logged a complaint with the care quality commission when I was only 15 weeks pregnant. I suppose that was the precise birth of me as a Tiger Mom.


Needless to say, during a time which should have been so joyful, we were instead entombed by every possible negative emotion. I absolutely hated being pregnant and just wanted to get away from those medical professionals. The evening of the day we learned Rukai had Down’s syndrome I found myself wailing in the shower – not at the diagnosis but instead at what it meant for us as a family. I was terrified and nearly frantic that we’d never be free of that fear and intrusion.

I didn’t want to even try for another baby because I didn’t want to go through all that negativity again.  And we never did. Six years on, Rukai remains an only child.


It’s little surprise that for years, my emotions continued to seep out from a place of deep resentment. After all, our joy had been taken from us. A happy new beginning for a first born son was lost and we’d never regain it. For a sentimental person like me, that’s awfully hard to stomach.

Two years later, we even moved towns to get away from the NHS trust we were under because of the horrendous memories. Worse still, the people who had delivered us all that emotional pain were fairly oblivious to the level of pain they were causing.

I would guess there are others reading this who can completely relate and for whom that all may have brought back painful memories. I’d say I’m sorry, but in keeping with today’s theme I’ll say ‘congratulations’ – because we are on this journey together and that is the word we all need to hear.

The language used when a child is diagnosed with Down Syndrome, either in utero or post-natal, has forever been encircled by ‘I’m sorry’ and that needs to change. It needs to change because it leaves lasting scars which deny new parents their right to enjoy the journey with their newborn child.

This is why I share our story.


So what is a Tiger Mom?

Whether you call me a Tiger Mom, Mama Bear or something else, the definition on screen pretty much holds true. And of course this also applies to Dads, Nans, Grandads, and everyone else who cares deeply about someone with Down’s syndrome.

We are fiercely protective of our loved ones because they are all too often discounted by people who actually know nothing about them as individuals but base all their opinion on theory and their experience with other people who happen to have Down’s syndrome. We have been conditioned to life on the defensive because of our experience. Because of our love. Our trust is thin and closely guarded and we have quite probably been burned before.


Those of us who whose knowledge of Down’s syndrome extends well beyond theory know how dangerous the stereotypes and knee-jerk comparisons can be. We also know that Down’s syndrome is not disaster, it is only difference.

But most importantly of all, we are driven by the belief that every human being is equal and makes a contribution to this world. Human beings must not be marginalised. We all bleed red.

Of course people with DS can have medical issues, and of course they will have difficulties, but hand on heart, who do you know with none of these issues? I’ll leave you to answer that one on your own.

I’ll also leave you to challenge that theory with a Tiger Mom at your peril!


Needless to say, being bombarded with negativity creates a mighty deep chasm between parents who are trying to welcome a new child to their family and the professionals whose job it is to “fix what’s broken”…


Because what they all failed to realise is that despite a diagnosis, my son is not broken.

He is not a condition.
He’s not a problem.
He’s a boy.

And his name is not ‘Downs Syndrome Person’ or ‘They’.

His name is Rukai.


Right. So how DO you create a Tiger Mom?


The best way to create a Tiger Mom? Turn her from Mother into ‘Other’.


You’ve seen in the opening video how heavy it is to be bombarded with negative language. A typical mother-to-be is congratulated. She is smiled at, asked about planning, whether she’s selected a name, has she finished the nursery.

We had none of this. I was ‘othered’ from the start by my age and my medical history. It wasn’t a joyful journey. And when the first anomaly was detected, there was an immediate course correction amongst the medical team to identify and ‘fix the problem’. I was hastily turned away from the ‘ordinary pregnancy’ pathway and bundled through the door marked ‘Other’.

Of course any woman would appreciate the attention to the health of her unborn child, but the antenatal team mustn’t focus so heavily on the medical issues that they forget they are still dealing with the same woman who arrived to the appointment in total positivity. My unborn son was loved just as much AFTER the identification of an issue as he was loved before the identification of the issue; even more in fact, as I felt a far greater need to protect him from all the furrowed brows around us.

I’d wager to say that when women are upset about a finding antenatally, it is from a point of love and a need to protect the unborn child. A mother’s reaction can only be turned to fear and horror with guidance and provocation. And those come from loaded language.


I’d ask all professionals to please be more careful to not pull the rug out from under that mom’s feet by ‘othering’ her, or the damage is already done and her trust will begin to decay.

It is also important to remember that the antenatal medical community basically ‘sets the standard’ for how everyone views and treats people with disabilities – medical practitioners are the first ones to identify the disabilities after all. So when language remains so negative from the offset, it helps to embed the ableist attitudes we see so prominently across all of society. The only way we can heal society and improve equality across the board is to change the way we speak about disability.

And I believe it all starts with antenatal medicine.

Every woman’s pregnancy is full of hope until someone takes it away. Don’t be that person. Find a better way to deliver a diagnosis without focusing so hard on the negatives.


The second way to create a Tiger Mom? Go well and truly over the top.


I have, on a few occasions over the past 6 years, asked medical professionals whether they’d be asking me a question / taking a specific approach, etc. if Rukai did not have Down’s syndrome. This is largely because much of what we’ve experienced often feels like overkill; like a complete box ticking exercise because he has Down’s syndrome, without paying more specific attention to Rukai as an individual.

But nothing has come close to our ‘diagnosis day’.

I’ll help you get a feel for it with a quick little quiz…




My mother, husband and I were awaiting Rukai’s blood test results in the private room they put me in after his birth. Minutes after my husband stepped out of the room for a little air, a parade of five hospital staff, two whom I had never seen before, walked into the room, and lined the wall in front of my bed. Before I could do anything about it, the doctor started telling me and my mother that Rukai had Trisomy 21.

I pulled Rukai closer as the doctor began to speak and then told him to stop talking until my husband came back.

Not only did we not need the circus in front of us but for him to start speaking in the absence of my son’s father was more than I was prepared to take. I made them stand there and wait for him to come back, then after he’d taken a bit too long for my liking I asked my mother to go and find him. To this day I haven’t a clue who the other two people were as my notes don’t give any details.

Worse still, that diabetic midwife I’d seen week in and week out for so many months was in her clinic right down the hall. She could have come in, sat with me and given me the news.

Sending five strangers on parade to deliver such sensitive news was about as poor a judgement call as you can get. I am a huge supporter of the DSA’s ‘Tell it Right, Start it Right’ programme as a direct result of that gross insensitivity. That shouldn’t have happened to me and I certainly don’t want it to happen to anyone else.

You can also create a Tiger Mom by constantly offering her help instead of hope. Her child isn't broken and doesn't need 'fixing', he or she needs support to succeed in life.




It may look like semantics but it’s not. I appreciate the word ‘intervention‘ is medical, but when you are talking to new parents there are far gentler ways to frame the ways that their newborn child can be supported than to use a loaded word with such negative connotation.

In our case, we didn’t pursue Makaton early on as it was being forced upon us as a ‘need’ because our son was perpetually being defined as ‘less than’. Like the diagnosis, this too was handled terribly. The phrase ‘early intervention’ is still cringeworthy to us six years later. In EXACTLY the same way professionals don’t like to be told what parents have found out for themselves, parents don’t like to feel their hand is being forced by people who have known their child only for the span of a medical appointment. Take a step back. Calm down. Present information more sensitively and with empathy for how the parents may be feeling. More importantly remember that every child is an individual and your learned theory is less relevant than every individual child’s actual life experience and history.

In the case of Makaton, my son would have progressed better and sooner had we not been pushed away from it by overbearing and insensitive professionals. We are catching up now but it feels like a huge missed opportunity which could have easily been prevented.


This is from a blog I wrote when Rukai was only two months old. Two very negative concepts were already embedded in my thoughts: that of ‘othering’ and an introduction to how much professional input would go on to feel like  little more than a ‘box ticking’ exercise. With every medical appointment these feelings grew stronger.

These people were asking us to respond to our son in a certain way but their actions were actually making this entirely impossible. It was infuriating and maddening all at once and I began to suffer from anxiety as a result, questioning whether I was doing a good enough job as a mother.

In retrospect, the latter is perhaps the clearest evidence of the damage caused by all that negativity. It’d been drilled into my head that I’d do something to cause harm to my son so naturally I thought nothing I did was good enough. I know now that this is not true, but it’s been a long road to get here. Again, totally avoidable.

The next way you can easily create a Tiger Mom is to offer her leaflets instead of lifelines.



Leaflets certainly have their benefits, but put plainly, you can’t ask a leaflet questions. It’s important to not rely on providing information to new parents from leaflets alone. Learn what social interaction and real life information you can pass on to new parents and parents-to-be and point them towards it.

The beauty of online communities is the ability to dip in and out of them with as much anonymity and lack of commitment as you like. They are informal and as ‘safe’ as we need them to be. New parents who are being told their child is going to be different have a huge emotional adjustment to make. They will most likely feel put off by a leaflet that says in effect to ‘read this because you are now one of these’. They will probably not want to ask a charity for information, nor to join a ‘support group’ because both further the ‘othering’.

Remember that there is safety and comfort in that ‘arms length’ interaction in the early days. Offer everything and let the parents choose which provides what they need, rather than only giving them what you think they need.

If you really want to create a Tiger Mom, take what isn't yours.



When Rukai was born, the hospital took our personally identifiable data, including our hospital numbers, and passed them on to a Down’s syndrome registration database without my knowledge or authorisation. I only learned about this because the Down’s Syndrome Association leaflet pack included details of the database and who to contact to opt out. I was livid. If there is anything that reinforced my anger, it was this.

We opted out. I questioned at the time what the purpose of keeping the data would be, and am actually more concerned now in light of NIPT rollout. I would certainly hope  that my son’s data wasn’t being used to support efforts to prevent people like him from existing.

___

From the minute I was diagnosed gestational diabetic I felt as if medical professionals were trying to take ownership of my son and do things ‘to us’ instead of ‘for / with us’. Taking and passing on our data was merely the icing on the cake.

If there is a valid need to collect and share someone’s data you should ask for it. Thankfully the European GDPR will eliminate any loophole legality of this process in the UK. And if you wouldn’t be taking certain data from a ‘typical’ child, you shouldn’t be taking it from a child with Down’s syndrome. Especially without asking for it.

And you will certainly create a Tiger Mom by throwing her only child into a proverbial box.


I cannot keep count of how many people have referred to my son as ‘They’.

There is a belief by many doctors that he must certainly be in a special school. ‘Othered’ without knowing anything about his personal abilities. When he fell ill last winter, we took him to A&E where the doctor said ‘he goes to special school?’ She was absolutely shocked to learn that he attends mainstream.

There is also a prevailing belief that Rukai has numerous medical problems when he hasn’t. I appreciate that many people with Ds have medical issues. But many do not, and that is all too often forgotten. Do not remove people’s individuality by assuming that everyone has the same issues just because they have the same genetic condition. They don’t.

One audiology appointment was led with ‘has he had any surgeries lately?’ The appropriate question would have been something like ‘how has his hearing been lately? Any changes?’ Again, it’s not semantics. Please, see this. Try to feel this. Learn this. It’s so damaging.

During a recent surgery follow up (surgery that had zero to do with Down’s syndrome) the doctor said ‘well the good news is that he doesn’t need any further surgeries…with all the other problems he has’. I beg your pardon?!

He doesn’t have any ‘problems’. The reason his development delay poses any issue at all is because of outside input. Rukai is absolutely fine with his development and his abilities and we are happy to move at his pace. What is the hurry after all? It’s his life, not ours.


We even had one professional write what you see on the screen in a report.

‘You explained that you and your husband are very happy to get to know your son as an individual’.

What a ridiculous thing to say. The only reason I can think of whereby someone would question whether we were viewing our own son as an individual, is because that person’s own base belief is that he is not. Projection of a personal belief that Rukai is 'one of many'. ‘They’. ‘Other’.

Another stack of kindling on the fire. The Tiger Mom grew claws.

___

And all these statements and false beliefs and stereotypes come in and out of our lives, when all the while our day to day is looking something a little more like this…

(Here I inserted a video of Rukai’s preschool development, during which he is climbing, eating food with a spoon, bouncing, learning to walk, dancing, basically doing everything a ‘typical’ child would do, just a little bit later, and in his own unique way.)

And that’s what it’s all about.

Not disaster. Just difference.


Rukai is six now. He is sharp as a tack, he is determined to a fault, he has the true steel grit of a true warrior. He is my son after all!!

He’s just finished year 1 in mainstream school, is working on signing and basic phonics. He still has difficulty with mobility but he’s getting stronger every day. I’ve only just heard him say ‘MaMa!’ with true purpose but he sure got there in his own time. He said it.

He’s not yet toilet trained but he’s on his way. He is behind developmentally to his age peers but he has plenty of friends amongst them. He is very popular at school and lights up every room he enters. He has an emotional intelligence others can only dream of, in particular the owners of all those negative voices from the past. Those voices which will remain firmly in the past, unless they are brought into today, solely to educate others.

I will remind all those people that my son is not a condition. He is not a problem. He is not a ‘risk’. He is not ‘They’.

He is a boy. He is Rukai. He is amazing.

And we are still not sorry.

Saturday, 26 May 2018

Pilgrimage.

Seven hours in the car, alone, uninterrupted, gives a girl plenty of time to think.

It's only the second time I've left Rukai for a few days to do 'something important'. The last was a flight overseas to that epic march in Washington, but this one was much closer to home and has made me far more introspective. Why on earth is it so pressing for me to get back to the Lake District, to summit a mountain which in the view of many isn't much of a mountain at all? Yet Scafell Pike is the highest peak in England, one of three compressed into an event I left incomplete just about nine months ago; to the day as I write, in fact.

I drove through torrential rain, trying to see through the water spitting up off the back of the lorries, trying to see through my heart and its reason for taking this pilgrimage up north. Alone. I was singing along to Led Zeppelin's 'The Battle of Evermore':

I hear the horses thunder, down in the valley below. 
I'm waiting for the angels of Avalon, waiting for the eastern glow...

You bet I'm waiting. Coincidentally, I've waited the same number of months as it takes to bring a new life into the world, desperately needing that sunrise and summit to deliver new life from me. To put this down. To close the book on another set of bullies. Because in retrospect, that's exactly what they were.

I've done this sort of thing so many times before, and my husband just nods and supports what I need to get done. 17 years together and he's become pretty aware of the fact that I am comprised of 60% water and 40% 'need for closure'.

As I'd been looking at routes up the mountain I bounced the idea off him that maybe I'd take the longer more scenic route to the top. He just looked at me, waiting for me to answer my own question, which I did: 'no, if I don't go exactly the same way up, it won't feel finished.' So tomorrow will steer me to that same parking lot. The one I'd last seen with eyes red from tears of angst and anguish and anger so deep it boiled my bile. Those fetid strangers telling me I couldn't. You cannot because we think you aren't able. Now please be quiet so our van drivers can get some sleep (on top of my kit bag as it happens)...

I know exactly what I'm capable of. So why on earth do those words and those actions light me up just remembering them? Why can I not rest until I finish this thing?

_____


Rukai finally learned to jump while we were at a theme park a couple of weeks ago. He's six years and three months old and he's finally learned to jump. The first attempt so self-led, so out of the clear blue, it gives me that sly 'I-told-you-so' smile every time I recall it. Climbing off a rollercoaster, he took my hands, bent both knees and launched himself onto the floor, very nearly effortlessly.

"Well done, buddy!" said I, beaming. Another milestone. They all come late but still they come. I remember hearing how he wouldn't be able to do ABC without this-or-that-therapist and there he does. With love. Only love.

Life is learning. Love is therapy. Rukai is not a medical problem, he is a boy learning how to do things. In time, in time.

As we reached the exit steps, he decided to jump down them all. My cheeks were about to burst from the joy streaming across my face. I told the ride operator he'd never done this before, still her lack of interest was palpable. Every day we are out there clocking milestones and winning battles while she lives inside her ordinary, wearing it like a cloak.

And there we took our joy out into the sun.

As do all new-things-that-kids-figure-out, the cycle continued for the better part of an hour. Off this ledge, off that ride, off another wall, he took my hands and jumped. And then there was a ramp. I was stood behind him, still holding his hands, so I could not see a furrowed brow thick with concentration, I could not see an epic grin of achievement, I could only see knees bend followed by the distinct sound of two feet slapping the floor in unison. And again. And again. And I cried out "Rukai! Have you just jumped all by yourself?!"

It was a question, yet I already knew the answer. He has. He can. He will.

_____


Yesterday's seven road hours, in all their rainy darkness, took me back to the shine of that magical day of jumping. To the first moment of standing. To the day he figured out where his feet are. To the first grin, the first laugh, the first babble. Words are out there. Words will come too. Patience is a virtue. Patience is everything in this life.

It's ok to go slow, as long as you go.

At the beginning of life with Rukai, we started logging milestones in one of those baby books before we realised that it would be too painful to watch the dates go by without a milestone tagging along. And then one magical day we realised the milestone books are a total nonsense, and they only allow medical professionals who really know so little about what Rukai can and cannot do to gain information and pretend they know so much. Medicine is meant to work along with us, not pat us on the head and say 'shhh, let the experts handle this.'

I've said it before but I'll say it again because it's important: the expert on Rukai is Rukai. I am just the tour guide.

Yet there are so many people back through those 6 point three years who would deny all of it and imagine there is no hope for a journey, there is no success to be seen in the invisible crystal ball he has been shackled with round the ankle. He can still jump with that shackle on so they'd best think through those theories once again. We'll wait.

Because patience is everything in this life.

Like our progress, those memories are relentless. And they always yank my chain. Because I feel as if I could have defended him better. I feel as if there is a magic switch to throw which will open their eyes and take away the misinformation. I cannot go back and fix everything I didn't do well enough so now what? Perhaps that's the theme for the journey home on Monday.

Still those seven road hours were a serum, a balm. They provided the missing puzzle pieces. And somewhere in the midst of a jaunty, drizzly loop around a silent lake, while breathing in country odors and bleating sheep song, I figured out exactly why I am up here again. Why I have to finish this challenge, even when it's no longer the same challenge. Why I have to prove to people who couldn't care less - just like that ride operator - whether I've done it or not.

Lake Buttermere

I love to run. I love to do athletic challenges which may look on paper like they are far beyond my reach. But as long as you keep moving, nothing is beyond your reach. That is what goals are for. Aim high. Draw the bow. Fire the arrows. Learn when you miss. Draw the bow again. ("Sing as you raise your bow, shoot straighter than before.")

I fight so hard for people to stop marginalizing my own ability because every.single.day. I see how many people marginalize Rukai's ability. I get it. I know what that looks like. I know all too well how it feels to be on the receiving end of pity and low expectations. People who don't know either of us from a bar of soap take one look, whether on paper or in person, and make every last assumption about capability and drive and determination. But what they fail to realise is that having the ability to endure such staggeringly low expectations makes the pair of us stronger than they ever will be. Those who endure, and survive, and continue after they fail, and eventually succeed, are going to change the world.

Don't throw baby in a corner. Don't throw mama off a mountain.

You just try.

Wednesday, 21 March 2018

Of Gratitude and Pity. | World Down Syndrome Day 2018

As we find ourselves here at the end of the most recent trip around the sun, on that special journey that runs from March 21st to March 21st, I am feeling every one of the emotions all at once. 'Having all the feels' as it's said. So much has happened between the last time I wrote about this day and this time I'm writing about this day and I'm finding myself at a loss for words. Which really is saying something, particularly if you ask my husband because he'll tell you that I've never shut up. So imagine what it takes...

Anyway in this kind of situation, I suspect it is exceptionally positive that I am still talking. Because this is important. Not just to me, but to you. More than you realize.

So where are we now? Do we know what Down Syndrome is? Yep. Check. Six years of it, and still the same third copy of the 21st chromosome.

Next, still loving our son so much it hurts?
Yep. Today a bit more than the last, for the new tattoo decorating my arm, incorporating my life motto and that magical 'lucky few' set of arrows. Draw the bow and let loose (the dogs of war). Over and over and over. That pain worth it for all the other pain having now dissipated. Those early days of sadness and feelings of loss, those feelings implanted by a medical community who would find it simpler to read lists and tick boxes and study thin surveys and recall days of old where people were not people but locked away simply because other people didn't choose to understand them. They are learning, and my job now is to help teach them. Aside from ensuring Rukai has a beautiful and successful life, nothing matters more.

Which brings me to the first part of this round the sun journey. We will start with the less desirable, the less positive, the less joyful, to get it out of the way. We can't ignore it because ignoring things like this is what has got society into this ableist mess in the first place. But we will look it square in the eye, grab it by the shoulders, shake our head and say 'no, not today, no. You're not coming in today. Nor tomorrow. And we will make you go.'

These are the trolls. The haters. The people who mock our loved ones. Those who make people with Down Syndrome and other disabilities the butt of a joke and they hold their bellies with laughter and covet those others who join in like sheep. These people will laugh until the end of time, because these people will never get it. These people will never come round. These people will never be part of my life, and my world, and accept my son as a person who has a contribution to make to society. And you know what? I no longer care. For them I feel nothing but pity, and, if I'm being honest, slight embarrassment for their total disregard for what makes humankind amazing, and that is that we celebrate our differences, and we welcome everyone to the same grand table called Life. If you want to rock up outside and hang out in the mud with the pigs and throw slop at us, we will slam the door in your face and turn back to our joy.

And there is where I find the Gratitude.

Despite what I was led to expect when our son was born, our world did not come crumbling in on us. In fact, it got bigger. The mist lifted, the sun shone, every other positive analogy for what makes a life better, well...it happened. Every bit of it. We inherited an entire new family that splinters off into a billion different directions. Because it's not just a Down Syndrome family we joined, we became part of the global disability community and THAT, my friends has prised open my eyes and lifted up that huge part of my brain that wasn't doing any work before. Now I'm starting to understand what every marginalized community of people in all our history has experienced. I no longer see people with disabilities and think 'I wonder what's wrong with them?' Because there IS nothing wrong. There is only difference. There are medical complications and things that take health and many that take life, but it is only difference. We all bleed red.

Over this past year I have considered the striking similarity of Rukai's developmental delay to my very slow running pace, how easily I injure, how hard I have to work to improve my running ability. We do not all learn to do things quickly. We are not all good at everything. Equal.

I have considered the disability endured by my aging and ill father that ended in his death five years ago. If we live long enough we will all become disabled in one way or another. Those trolls who mock disabled people will most likely meet Karma one day and she will bite. Such a shame it will be too late to undo all the harm they've caused people in the interim.

I have reflected on something I read recently which took the wind out of me and to paraphrase: if 94% of people who know their child will have Down Syndrome will terminate the pregnancy because they are fearful about what kind of life their child would have, what would the societal 'normal' look like if all those people were allowed to exist? Rukai wouldn't be the only child in his school with DS because there'd be dozens of others like him. I don't know, call me kooky but I'd take a few more, would I be so lucky. I know no one else who lifts everyone he encounters like he does.

If we fear that which we do not understand, how much less afraid would we be if only we were allowed to experience these human differences at greater scale? What if we could learn so much earlier that disabled human beings are not to be feared? Why are we so afraid? And why do we let ourselves live our lives in such a negative place?

No fear. Not here. But I had to have Rukai to know this. I go on and on about it because I want to save anyone who still may need convincing from further years of not knowing how wrong it is to constantly 'other' people with disabilities. It infuriates me because it's just so flat out foolish.

We. All. Bleed. Red.

Back to Gratitude.

I am grateful for the gift of my son.

I am grateful for what is good about him: his humor, his never ending empathy, that his permanent set-point is love, that he gives a wicked cuddle and has an equally wicked laugh.

I am grateful for all of you who have read this far, who care about this. Who love him, and listen to me. I love you all, more than you can possibly begin to understand.

I am grateful for the very inclusive place we are living, the beautiful school who celebrated every minute of this very special day with us this year. To have taught the children the Makaton and lyrics to the '50 mums' video and live streamed the performance on the school Facebook group today, there are no words to say what that meant to this tired old mum.

But I am most grateful for the foundation builders.

To all the mums, and dads, and brothers and sisters, and children who are now adults, or those who were sadly lost long ago. To all the activists and advocates, the charities and fundraisers and awareness bringers. To all the medical professionals who do get it, and who are working so hard to educate their colleagues. To all the celebrities who are using their fame and status as a force to bring forth a positive change in this life by calling attention to inequality everywhere. For all your years of tireless advocacy that has got us to this place called Today. For those setting down everything else in their lives to keep the conversation going, to 'lean into the discomfort' as I read once and it has stuck with me ever since. I lean with you. I lean hard. The road is long but you have lain it and we are run / walking that road. Until we collapse and have nothing left to give but our last dying breath.

Relentless. Forward. Progress.

Thank you.

It is YOU who I think of when I am wiping back happy tears (again) because of something wonderfully inclusive that's happened in our lives.

It is YOU who I think of when I notice language changing from 'risk' to 'chance', when I see so much less dispersion of the repugnant 'R word' and I know there have been millions of people who've watched a YouTube video and wept and clicked on thumbs up and commented about how much it moved them.

It is YOU who I think of when I reflect on how easily we can mix in our community. Because without all you've done, society would not have come this far.

But still so far to go. Shoulders back. Take a breath. Take my hand. Let's fire that arrow once more and fly.

#theluckyfew
#wouldntchangeathing
#wdsd18

Saturday, 16 December 2017

The one where all the dreams happen.

It took me twenty minutes to stop crying.

Twenty minutes! That's a high school lunch break. That's a 'between meetings comfort and email break'. A drive to the forest. That's how long it takes to finally fall asleep after a day so hard the only way you find dreamland is to think of 'white, empty space' and hope for the best.

Twenty minutes. But it's little wonder it didn't last longer, because this was a moment I'd waited to see for the entirety of my life.

One stage.
One dance performance.
One son.
One lifetime of hoping I'd live this moment.

We have been so blessed to have found the place we live in now, and oh how we found it! Nearly pushed away by a real estate deal gone sour, we somehow stumbled upon our current home 3-1/2 years ago, only five houses east of that lost property. This house has brought us to and kept us in this place, amongst these people, with this dance school, with that amazing human being who has been so welcoming and wonderful to our beautiful boy who wants little more than to share the joy that radiates from within him with everyone in reach. Shaking bum. Grooving to his own beat. 

My son. On a stage. Dancing.

Years ago I prayed that he would dance. They had me so worried he'd even walk. His walking still stilted with poor balance but today the angel that's going to change all that. Because...well, I'm crying again as I write this. Because those deep fears remain ghosts. Those worries, vapor. That was my son up there. MY son. On a stage.

Dancing.

Yes, I later had to carry him to the car he was so knackered, but STILL...

Those who have known me for decades will be reading this with an altogether different totality of heart and may quite likely be stood up and cheering. My life was dance. My only motivator was dance. My soul...for dance. I wish you were all there. I wish you could have seen that live. 

My God.

It all feels too hard to explain, too vast to bundle up into type on a screen. But if you know me you know I was incinerated this afternoon. I stopped filming and fled to the lobby. Absolutely unable to stop the floods of tears. I saw a man standing there and tried to explain what I was feeling, how grateful I was. He happened to be the father of Rukai's dance teacher. It was as beautiful a finish to that beautiful moment as I could have imagined. I thanked him for creating her. And I meant it.

I'd started filming the stage some 60 seconds before Rukai was due on it. I didn't want to miss the curtain stroking past that beautiful face. Not a second to be lost. Not for this. No way.

I said to the air 'come on dude, you can do it'. Not because I didn't think he could, but because I could not believe this moment had finally come. That I was about to see this. And the curtain pulled back and there was my son. On that stage. And it was all I could do to hold the camera still. And exactly as I did the day before while watching him perform in the school nativity, I wept silently, while an epic grin reached the lobes of my ears and quite probably pierced them with joy. A joy that wrapped around my very soul and lifted me straight to heaven to high five the lost family. Those who were seated right beside me while that camera captured it all. They clapped and whistled for all they were worth. We celebrated that magnificent performance.

The one we were threatened with never being able to see, those many years ago.
Oh, we saw it, mate.
We saw it.

And that pride of my pride knows my pride because I told him all about it. After he saw me grinning and waving at him in the finale. And he waved back. And in that room full of our new 'dance family', there was, for that moment, no one but us. Me on the floor filming, him on the stage waving. 

Oh this moment!! How it shines!!!

I'd no doubt he'd blow me away this afternoon but I am still entirely in shreds. And just like I'd rebuilt the cheese all those years ago, I have glued the heart back together again. My pride---

God, there are no WORDS for it!!!!! I have lost all eloquence, the prose gone to gurning. I am equally full of and empty of emotion. Never been so spent in all my days.

This has been a glorious year of personal disaster and equal personal triumph. My plans for the next are larger than anything I've ever pursued, mostly because I need those challenges to build myself into a better me. I am nothing to Rukai unless I am the best me going. He deserves nothing less.

But man alive, that boy--my boy--

Well, if he is supposed to be suffering...
If we are supposed to be 'barely coping'...
If our life is meant to be difficult, and challenging and painful...

Burn the dictionaries.
Go back to preschool.
Teach me all of existence once again.
You are wrong.

My words are the very best I've got to offer, and today these words are clumsy. Disjointed. My mind is in a whirlwind. 

Today, my son was dancing on a stage.

If I should die tomorrow, that alone has made this a life worth living.

Monday, 20 November 2017

Goddamn you, he's a PERSON.

It happened to my Dad once.

As he was dying, it happened to him. His body was riddled with the cancer that would eventually kill him, and he was in so much pain he could no longer walk. Disabled too by time, something which we will all face if we live long enough. That very reason society shits on the elderly. No one has the patience to 'deal with' them, the slowed pace, the grumpiness about physical deterioration going hand in hand with awareness of their own mortality. These all hard won along with the wisdom of the years should earn them respect. But so rarely it does.

Those years forgotten. Achievements forgotten. To an ableist stranger, if you display disability, you are nothing.

We had all gone over for a visit, that last Thanksgiving together, the most melancholy I'd ever known. No joy, no thanks, just fear of what was coming. And the pain was fully in charge of the visit, forcing Dad's pride into his pocket and his body into a wheelchair. On that same trip we'd taken him out for dinner, one of the last we'd ever have with him. As I got Rukai and myself into the car, T started to wheel Pop from our table to the door of the restaurant. But he couldn't get there.

He couldn't get there because some impatient, selfish, ableist fool stood firmly in their way, looked directly in their eyes and wordlessly challenged them to just try to get past him. Oblivious to the scene from my vantage point in the car parked out front, they finally managed to escape and Dad was apoplectic with rage. A record number of F bombs, even for him - and for someone so weakened by disease to be so strengthened by anger told me all I needed to know about the exchange. Funny thing, big emotion. He was like entropy contained by two armrests and four wheels. The message embalmed in all that fury: goddamn you, I'm a person! How dare you disrespect me, merely because I cannot walk! If I were a younger man, I'd...

If.
If.
If.

Five Thanksgivings later, here we are in this small town, on the other side of an ocean. Minus one Dad. Plus one inclusive mainstream school which has been amazing, as have all of its parents.

Until today.

Now, Rukai is not a steady walker. We know this so we are always aware of and courteous about space and the speed at which typical kids wish to plow across a playground. We try to keep to the side to keep things flowing. We go at our own pace. Admittedly, sometimes this pace is frustrating even for me, but it's Rukai's so it's ok. He's in charge of that show, I'm just the stage crew - opening and closing the curtains on each day, standing by in the green room making the tea.

Today we crossed the road more slowly than usual, hoping 'that-woman-with-the-pushchair' would pass us by before we could position ourselves on the narrow path. My way of thinking has always been that if you want people to be tolerant and accepting of your needs, you have to work within their norms while maintaining and teaching them your own. It's a bit like going outside to smoke before it was mandated. Courtesy for other people. That flows in my veins, it always has.

Clearly that doesn't work both ways.

Throngs pouring through the school gates, rushing to and fro to avoid missing that 'AM' attendance tick and having to go explain lateness again, I could actually feel the frustration as we hit the bottleneck at the gate, followed by the subsequent draft as people raced past us. After we were nearly rammed by three of them, I considered moving us to the side.

But why should we have to? If there's a roadblock while you're driving a car you don't expect it to move out of your way, do you? Slow the hell down or go around us. We have a right to be here too.

Now approaching the labyrinth of picnic tables, two pushchairs are passing one another. One heading in, one heading out. 'Out' pauses to let the other one through, with a slight smile and nod for 'In' and barely a glance at us. As we begin to navigate the same route, she barges past.

No room for you. Too slow. Get out of our way.

This did not just happen here. Not here.

No mate, you get out of our bloody way.
Goddamn you he's a person. You get out of our way.

I am on fire.
I bring Rukai up the ramp and our amazing TA is there, seeing it all on my face.
'Are you ok?'
No.
No I'm not ok.
This is not ok.
Society is not ok.

I am broken. I am in shreds the past couple weeks and those shreds were just tossed on the fire and set alight. The black dog, the black death, whatever it's called it's got me in a choke hold right now. I completely lost my shit in the car on the way home and screamed it out. It made me feel better. Just. Meanwhile the wheel called 'things-which-are-so-bloody-hard-to-change' is rolling me into the mud again. Oh to break the wheel like that fictional Khaleesi.

It occurs to me that a talk I gave earlier in the year at work which required a bit of research into how society views Down's syndrome has really shaken me to the core. I cannot un-see or un-hear some of the horrible attitudes out there, I cannot take away the misinformation other than to write about it, to rail about it. And again - still, always - it's the external forces and attitudes in our world which cause us distress. Down's syndrome in and of itself does not.

And it never truly has.

We are the lady in the magician's box. Empty box, full of nothing but us, bright and beautiful and shining and full of promise. And then the lid is closed and in comes a blade.

Misinformation.
And another: Fear.
And another: Prejudice.
And another: Discomfort with difference.

And that magic man completes the illusion by pulling all the pieces apart and showing you that wot hey! The puzzle no longer fits, it is not linear. It is the outside forces which challenge the wholeness of the lady in the box. Leave the box alone and it's nothing more than 'move along, there's nothing to see here'.

All these blades get jammed in, severing us, twisting us around, preventing us from just living in peace and then as quickly as it happens, out they come - away with the misinformation and fear and prejudice and discomfort. And the lady steps out with a grin and a curtsy, thanking the illusionist for cutting her to shreds. The unaffected watchers of it all sit and applaud, and sip their gin. Again.

No thank you. I'm tired of that box too.

Society is as broken as I am. It's like a never ending barrage of bad news and this next one takes the (urinal) biscuit...

In the past week I've read a great deal about something called Changing Places toilets, following social media commentary about the lack of them in John Lewis and other huge department stores. These toilets are designed to enable people who cannot weight bear to use a toilet or for their carers to change their incontinence products on an adult sized bed, through use of a hoist. These facilities prevent having to lay someone down on a filthy toilet floor to change them. Now, I have seen people recoil in horror when they watch someone enter the toilet on an airplane wearing only socks instead of shoes. Imagine having to lay your loved one on a toilet floor every single time you go out?

Because there are only 1044 Changing Places toilets in all of the UK. 1044.

I have two toilets in my house.
There's two or three sets of them across the road at the doctors.
More at Tesco.
The library and all the caf├ęs down the road in town.
At the park, the firehouse, the church...

I can use any of those. Others cannot. And even though our immediate family doesn't personally require a Changing Places toilet, the fact that others do and they are essentially prisoners to 1044 points on the map is a massive, massive problem to me.

Following this outcry over the lack of facilities for human beings trying to just live their lives, people have still had the rocks to moan about campaigners 'expecting too much' and other such ilk like 'you can't cater for all disabilities'.

Is that right? Ok, imagine waking up one morning and not being able to leave your house unless you mapped out a route via that magic 1044 places in the country where you could use a toilet, or change your child. Imagine that when you have spent ten years asking for a simple solution in more places, a solution which takes up about as much room as a parking space, that a retailer who will freely spend £7 million on a single advertisement will tell you that a) they cost too much and b) there's no room in their stores.

Ikea found room. Try again.

Ten years asking and it's not yet standard for new builds. The law has standardized how high bloody plug sockets have to be from the floor, and there are requirements about how many toilets must be in a bulding to align with number of occupants and even how wide the door to a disabled toilet must be. But a Changing Places toilet is not a disabled toilet. So to hell with you if you need more than standard help - stay in your house or seek out that 1 in 1044. Thank you for calling! Have a nice day!

It's little wonder I threw a wobbly in my car. I am flabbergasted by all this. Every day it's another inequality somewhere. The rich get richer, the poor get poorer and 'the disabled' get shit on. Repeat, repeat, repeat. That wheel is kicking my ass.

To all those big box retailers making excuses - shame on you. To all those with the attitude of 'get over it'. No. Never. Until society changes we will keep working tirelessly to change it. Because this is not good enough. I salute heartily all the campaigners - disabled people and able bodied parents / carers alike - who are out there fighting day in and day out for their right or their children's right to dignity. They are fighting for their right to exist, when society would find it simpler to lock them away, to prevent them from participating in life.

And that is wrong on every level. Should a human being actually have to prove they have the right to exist? Check your troubles at the door and take that one on, friends. This is Rukai's long term challenge, not bloody Down's syndrome. Down's syndrome is society's excuse to treat my son like a piece of purposeless garbage.

Not on my watch, mate. I know better and you will learn, you best believe it.

This broken society looks past my son and others who have Ds as if they were a problem who shouldn't even exist at worst, or a plaything who can only give hugs and high fives, and keep them smiling at best. He is a boy with a future who will not be mown down by people moving too quickly around him. He will not be a child for the rest of his life (despite what someone said to me when he was born, which five years later still irritates me). He will be a man and if I have anything to say about it the world will be a far better place by the time he has grown up. I eagerly await the days when he will advocate for himself. And I guarantee that I will be the proudest wing man of all time.

Failing that, I will die trying. I would hope to die very old, disabled from time, still caring about all these things.

And so should you.

_____


Twitter: @downinfrontpls
Facebook:  https://www.facebook.com/downinfrontplease/


Saturday, 21 October 2017

Age. Less.

I'm sat here staring down the barrel of 46, vividly remembering the climb up this Hill of My Forties. What a slog. What trials and tribulations. What a climb. What a view. This is the top, over which I'm about to fall. Down towards those ages which start with five, only to rise again. Up and down and up and down we all go. Riding this seesaw they call life.

How we live!

Sometimes battered, sometimes shining.
Bruised and beaten one day, then singing to the sky of our glory the next.
How we live.
THIS is how we live.

Those well past 46 will say 'Pah! Child! Wait til you hear what I've lived!'
And I'd answer 'Tell me. Tell me all of it. This life, these days, so few and so full. So wide with possibility and so delicate to balance. Pull up a chair and tell me how you've done yours. And aren't we all so ridiculously lucky to be here!'

Most of the time I don't know what the hell I'm doing. And it all happens anyway. And I laugh my way through mistakes and triumphs, victories and defeats. The more I learn the less I need to know. The older I get, the more particular I become about who and what I let get in. Isn't it all magnificent?!

The beginnings and endings of my own experiences, then insert one husband and one child to make one family and those extra responsibilities piled on and we live in the tornado as a unit. We screech and roar and tumble around these days, sometimes fizzling out over the water and other times picking up houses and hurling them into the next county, screaming 'AIEEEEEEE!!!' And having each other's backs. And hearts. Always that, even when it's sometimes difficult to find, worse - to feel.

To all the days before and to come, I love you.
Even the hateful bits.
Even the drama.
Even the confusion and loss and unrealized expectations.
Even the lost dreams, because out of every darkness there comes light.

Brighter, always. But you do have to look for it.

Hard work, that.

Still, as I age, I only want to age less. I don't want any days to go having been unlived. Having been missed. We either succeed or we learn. The clock ticks through it all and we grab time in a bear hug and squeeze, eyes welling up sometimes as we watch it go.

Here atop Mount Forties, the slope below looks a bit nerve wracking. To see time before you and know the pace at which you will step forward to greet it, well that is something else altogether. In retrospect, all those previous decades didn't really tell me much aside from all that I didn't know.

One more week and my latest trip around the sun will end. It's been one hot ride.

AIEEEEEEEEEEEEEEEEE!!