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.
A few weeks ago Rukai's TA was telling me how the children have been enjoying sitting with him to read a story called The Old Tree Stump. It's a Biff, Chip and Kipper book (common here in the UK, if you're unfamiliar), and full of many sign-able words, so a real winner of a story.
Sure enough about a month ago one of the little girls who reads with him during the school day brought out the book and told me again how much he likes it. Next thing I knew there were about 4 others who took a seat and joined us. Laughing away, signing with glee, loving the story and time with my son.
That child for whom I was so afraid, just like you may be feeling right now.
Today the crowd around Rukai - totally engaged and gleefully signing its way through that book - had to have grown to at least 10. It was standing room only around the desk. There were even a few boys this morning. It was something I thought I'd never see those seven years ago. Sure, life has since hinted that this is the true way forward, but a cold hospital room on a blustery February morning, staring down an unknown journey are most certainly the bogeyman. And we know the bogeyman is not real.
But what is?
Hope is real. Progress is real. Friendship is real. Curiosity is real. Children are malleable and the future is real. Don't be afraid of the world, help the world lose its fear. Go be amazing. Your child will be amazing, this is all I know for sure. There is no crystal ball, there is just you and them and one single day at a time.
As I looked up at all those kids this morning I laughed and smiled 'this is a reading party today!' and the response I got back from one of the children rang so loudly and beautifully in my ears:
'Rukai has a lot of friends!'
Yes. Yes he does.
Life.
