Let's talk about the R word. (Warning: frequent use of the R word)

So I'd like to talk about the R word.

There are so many angles to this conversation it's hard to know where to start.

Many of my Australian readers will have noticed that a couple of Australian tennis players dropped the 'R' bomb during the week.  This gained extra attention because a friend of mine, Kat - mum to Parker of the Bonds Baby Search (which he won) and writer of many articles and at least one blog (parkermyles.com), decided that was enough and called them out on it via a video rant she posted on her blog's Facebook page - https://www.facebook.com/ParkersPlaceAustralia/ . This went viral and a few media programs picked it up.

In case you've missed it, there is a strong feeling amongst many parents of children with Trisomy 21 that the word 'retard', or 'retarded' has lost its usefulness and is now just derogatory and should be banned. Of course, there are opinions in the T21 community right along the spectrum from not being bothered about it to being all for the banishment of the word completely, in all contexts (including medical terminology).

So from where does this word originate?
The Oxford Dictionary says it's from 15th Century French retarder, from Latin retardare, from re- 'back' + tardus 'slow'. (Its brother 'ritard' has long been used in classical music with the same connotation, slowing down.)
The Oxford has a verb definition: Delay or hold back in terms of progress or development:
'his progress was retarded by his limp'. 
This is how you hear the word used in a medical context. You hear 'growth retardation' quite regularly. As a verb it describes slowed growth. It's benign in its intent. It is describing abnormal growth in neither a positive or negative way. It's the opposite to acceleration. No-one's making fun of anyone or being rude when they use it. This is a verb.

Somewhere along the line, this verb turned into a noun, and that's where the trouble started.

I've stolen the following from Wikipedia [Retard (pejorative)]:

Retard when used as a noun is a pejorative word used to refer to people with mental disabilities.^[1] The word retard was widely accepted in the late-1900s to refer to people with mental disabilities; however it is now more commonly used as an insult. The word has gained notoriety for causing a growing number of mentally disabled people to feel unfairly stereotyped.^[2]

Etymology

The word retard dates as far back as 1426. It stems from the Latin verb, retardare, meaning to hinder or make slow. The English adopted the word and used it as similar meaning, slow and delayed. The first time the word “retard” was printed in American newspapers was in 1704. At this time, it was used in a way to describe the slowing down or the diminishing of something. The first time that any form of retard was used to describe mentally disabled people was during the 1960s when "there was a push among disability advocates to use the label mental retardation."^[3] This push from advocates was because older terms for the mentally disabled, like moron, imbecile, feeble minded and idiot, had developed negative meanings.^[3] Retard was not used to refer to mentally disabled people until 1985. It was widely accepted to refer to people who are mentally disabled as mentally retarded, or as a retard. From there, it turned quickly into a pejorative term, as people began to use it interchangeably with words like stupid, or idiot. Many communities, particularly in North America, regard the word as no longer socially acceptable. The fact that it is still commonly used has led to a continuing debate. A common replacement is the phrase “the r-word.”^[4]

Modern use

Retard has transitioned from an impartial term to one that is negatively loaded. For this reason, it is now widely considered degrading even when used in its original context.^[5]

Most commonly when retard is being used in its pejorative form, it is not being directed at people with mental disabilities. Instead, people use retard when they want to call their friend stupid, an idiot, or a loser.^[6] This use of the word retard is the part of what the campaigners are trying to attack. The campaigners are trying to make everyone understand that retard is a derogatory term no matter the context.^[7]

*****

So we are left with a bit of a problem as you can see in the last paragraph. People growing up since 1985 have adopted a noun usage of the word (I rarely hear it used in those over 40). It's like the boys at school used to call people mongoloids - and I'm pretty sure they had no idea what it even meant, I certainly didn't - they just wanted to be mean to the girls. 

It's generally the teens and young adults I hear using this word as a noun, and these are usually very kind people who are using it to describe themselves doing something they consider to be less than their usual example of intellectual splendour. Brain fart moments, etc. In that sense, calling an action of theirs retarded actually is descriptive of a slowing in themselves, so is almost linguistically correct - except for how the word got to there in the first place. They might also call a situation retarded, but not another person or their actions. This would be an adjective use.

Less kind individuals call their friends retarded or retards kind of affectionately, but I don't have any friends who would say that to me. I don't hang out with people who point out my bad points. 

Even less kind individuals would use the word as an insult. This is the kind of person you'd avoid on the street or get into a scuffle with. They're looking for a fight. They would also call you a dickhead, a fuckwit, an arsehole, a cunt, ad libitum, with all the spittle and forceful hate that accompanies such vitriol. We don't have to take any of this onboard, but it's the kind of language that just doesn't belong anywhere but has somehow crept into what is considered normal usage in many circles - Flinders Lane on a Saturday night for instance. Also, those insults also have some degree of respect attached to them. Calling someone a retard implies they deserve no respect. 

The telling thing you read above is that the adoption of this word for intellectual disability has come about because the previous words used (moron, imbecile, feeble minded and idiot) had developed negative meanings. I'm guessing that the words used before those ones were replaced because they too had developed negative meanings and from that I extrapolate that if we go on a campaign to banish the word retard simply because it has a negative meaning, it won't remove the negative intent. The negative intent is what makes the word so hateful and ugly. 

I consider us very lucky. Jacinta is surrounded by people who love her and think she's cute, beautiful and awesome. This includes her extended family, but also includes those who see her at school, at kinder, our friends, the Facebook community, our church, the staff at Aldi, anyone we meet in the street, those who watch her passing as she carries on with life - everyone. She is surrounded. By people who think she's cute, beautiful and awesome. 

While every small child with Trisomy 21 is individual, you would expect that every small child whether they have T21 or not would be considered cute and beautiful purely by virtue of the fact that they are little and cute and doing cute little things. No-one ever expects their toddler to be the subject of vitriol and degrading remarks, yet for too many parents whose children have T21 this is exactly what they encounter when out and about, at the shops, at the Doctor's surgery, going about their business. These children are called 'retard' or 'retarded' and the people saying it mean it with its full negative connotation. Some of these people mean it in a hateful way, some in a demeaning, degrading and disrespectful way. 

You can imagine - or perhaps you can't, but you can try - how it could be for a parent who loves their little child with all their heart and considers them the centre of their universe to hear someone saying horrible things to and about their child who is not only far too small to defend him/herself, but maybe even too young to fully grasp the intent of the words. 

Parents do at times come across nasty people who imply subtly that perhaps their child is doing the wrong thing to the person's own, or that a parent is doing the wrong thing in raising the child. This is an unfortunate part of hanging out with humans. If there's an infraction, call it, resolve it and carry on, upfront and frankly. When a child has been doing absolutely nothing wrong in the first place and you start calling them names, that is bullying. The bullying of a child impacts on the parent, absolutely. The words of torment become words that trigger all kinds of upset and anger, particularly if the anger is directed at some nameless stranger who walked passed, shot out the insult and slunk away before the shocked parent could think of anything to say in retort. 

Unfortunately it doesn't end when a child gets old enough to defend him/herself.  Even the best of us struggle to find the killer comeback when a bully decides to have a go at us - and as we all know, bullies don't grow out of it, they grow up and become adult bullies if someone doesn't do something about it. 

I'm betting that all around the country there are intellectually impaired children, teens and adults (whose thought processes are a little like many neurotypical adults who can't function in the morning without coffee and are at that point also intellectually impaired) who are still seething over the incident or incidents where they were viciously insulted and are wishing they had only managed to come up with the awesome comeback they have now constructed.  I'm fairly sure they probably replay this moment in their heads from time to time, in a version where they say it and walk away leaving the bully stunned in their wake. As do we all. 

So if you call yourself mentally retarded in the morning before a coffee, that is a correct use of the term - except if you're in the US you should be calling yourself intellectually disabled because of legislation passed in 2010 called Rosa's Law which removed the term 'mentally retarded' from all federal health, education and labour policy (and the implication is that it is now replaced across the board). 

But let's get to the absolute crux of the problem, to which I alluded earlier. 
One day intellectually disabled will be a stigmatised term and a noun will be derived from it which describes those with slower thought processes (belonging to a certain group with distinct medical diagnoses). We as humans want to come up with a quick and easy descriptive term - particularly in Australia we shorten everything. It's like calling people with T21 'Downsies' - it's quick and easy, and I'm sure very few people who use/d that term mean/t it in a derogative way. 

We have people who are using this word almost quite appropriately to describe their own intellectually slow behaviour, and it is with good humour and benign intent. From what I see, this is the most common usage of the word and it is very difficult to effectively explain to people who are using a word like they would any other - be it 'silly', 'sugar' or 'pumpernickel' why exactly they're having a perfectly useful word removed from their vocabulary willy nilly. They can't see that they're insulting anyone but themselves and they feel they should be allowed to do that. 

Still, there is language that is benign and language that is offensive. Some have a higher threshold than others for offensive language - and I find it amusing sometimes to witness a person with a high threshold for offensive language suddenly be shocked to hear a particular word used around them.  Different words are offensive for different people. As a general rule, if you wouldn't say it to your grandmother, or in a job interview, then just don't say it. 

Also, looking at many words that are considered offensive nowadays, if you trace them to their roots they were just working definitions for things that needed a word. I can think of an insulting name for someone whose actions are not up to your standard which used to be the term for someone born out of wedlock - regardless of their character. If you look at the history of the C word, it was not considered taboo in the middle ages, but gained a vulgar use in the last couple of hundred years. 500 years ago people were dropping the C bomb without batting an eyelid. The word 'gay' was around for 500 years before it took on any kind of negative connotation. Then it went from having a  promiscuous slant in the 1890s to having a homosexual slant in the 1920s, which definition has gone from being insulting to being a benign label for a group in society - almost full circle. 

Words change. Meanings change. The language is fluid. The R word will change. If it stays in use its meaning will change. If it drops out of use it will be replaced by another. So what do we do? 

We change attitudes. 

I have said before that I don't go for inclusion and acceptance. This is exactly why. Inclusion and acceptance lead to insults behind closed doors when they're not accepting and including. It implies that there is effort required in letting people from certain minorities live happily and exercise their human rights. 

What I shoot for is respect and understanding. When you respect someone, you don't have a nasty stereotype for them. When you understand them you can see their viewpoint and you have no more reason to exclude them than the person on the other side of you. 

We need to educate, educate, educate the people of the world so they can understand the lives and abilities of those whose thought processes - or even physical processes - may be a little slower than the arbitrary cutoff for 'normal'. 

We need to show the people of the world how many things the above human beings actually can achieve. I know Stella Young didn't want a medal for getting up in the morning, but when I look at what it takes to get up in the morning and out of the house, I respect those with physical or intellectual disabilities for showing up, especially when so many typically developed people would consider it not worth the effort and stay home on the couch. 

We also need to clean up the language we're hearing around us. Where have manners gone? Where did society change the rules on acceptable language? When I was a child you would never have heard the kind of swearing on TV or in movies that you hear these days - not to mention recorded music, and the content of the lyrics. I have to keep the radio on golden oldies stations so I can be sure the music and discussion is appropriate for primary age children. 

Then there are the billboards up everywhere. It's impossible to shield my daughters from sexualised images of women when there are women in lingerie, slicked with oil and sprayed with water, skin to skin with some guy - promoting sunscreen, or shoes, or undies, on the way to school! 

Culture has slipped very fast into a zone where standards have gone way down. This is the environment our young women and men are being raised into. Can we really expect them to magically imbue some class or respect when they are living daily in an environment where these are not valued and barely shown? 

If we want to get rid of the R word, it's a bigger problem, as Kat said. 

It's a bigger problem than just a word. 

It's about respect, it's about understanding. 

It's about knowing who actually inhabits your city or your country. It's about knowing more than just your own little suburb or school or workplace or church group. 

It's about being interested, and learning about the world you live in - from the actual people themselves, not from some biased media source. 

It's about standing up for class and standards and creating a world where all people are respected, and respectful art and advertising are supported.

This issue is deeper than a word. It's ingrained in our culture. We as a country can change it for the first time by deciding one by one to do these things. 

For centuries, maybe millennia, there has been vilification and exclusion of those who are a bit more unique than the rest. This once used to be based on survival. Now a man can survive even if he's lying in a coma for a decade. We have moved on and our attitudes can change. 

We just need someone to start. 

Surprisingly normal.

I've been neglecting you all, I know!

Why?

I've been busy, and busy with things other than Jacinta!

It's funny, the moment she was first potentially diagnosed, a few hours after birth, I wrote off the next five years as years of intense work and no fun.

I'm not sure what I thought, whether I thought that she would be disabled and hard work and magically not hard when she turned 5 or 6 and went to school, or if I just didn't see the fun in the equation, or was just shell-shocked and not thinking clearly.

The thing is though, I spent the first 2.5-3 years of her life taking care of a sick child. There were moments when she was doing well, like the time we visited the paediatrician at about 6 months and she said 'she's just a bonny baby' with a tone of surprise at how normally she was presenting.

There were no decent opportunities to get moving with any intensive therapies, and to be honest she's just kept doing so well considering her handicaps (leukaemia, heart, fluid in the ears) that I haven't felt the urgency to do lots of intensive therapy.

We have two other daughters, my eldest and my middlest, who were 2yo and almost 5yo when she was born. Doing my eldest's 5yo birthday party with 19 attendant princesses and one prince while Jacinta was in intensive care was quite a business! Got it done though, with help from some kind family, friends and acquaintances.

These other daughters have spent the last several years existing with less attention from me, either because I physically wasn't there, stuck in hospital, or because I was constantly thinking of other things we needed to be doing. Then I got burnt out, starting late 2014 and it didn't go away for a whole year, so I decided it was time to address it. I quit everything and gave myself a break.

Still, this is a byproduct of having a sick child, which is partly due to the chromosomes, but could just as easily not be. I've got my wick back, but am determined not to burn at both ends, since we all know how that one goes. My husband is working interstate again, like a few years ago, so there are limits to what we can do but I can write things on the calendar in pen and actually made it, as planned, to visit my dear friend in another state for the weekend, no kids in tow.

There are still things happening which are fallout from the past three years' craziness. My eldest was a little slow in getting her backwards letters and numbers sorted, which was ok in Prep but is not cool in Grade 3. I've started working with my sister who is a behavioural optometrist who very kindly sees us once a week and give us exercises to do.

My middlest reported to me with what seemed to be a broken tooth. As a background, she's had some teeth issues before which I considered a close call, but she's been diligently brushing since that time last year and we weren't due back to see the dentist yet.

The broken tooth turned out to be a seriously decayed tooth, and it wasn't the only one. It turns out she's been pretending to brush and coming to me with toothpaste in her mouth and showing me her minty breath. Thank goodness she has the highest pain threshold of anyone I know and she's capable of sitting in a dentist's chair for an hour.

So I'm having to work with the good old soldier's maxim, 'no man gets left behind'.  This is a favourite with the Institutes, and is why the whole family usually gets involved with an Institutes program.  Up until recently my eldest and middlest were getting left behind, so I've put the focus on them, to help us all get to square one, and I'm still working on my own health and wellbeing so that I am in a state to be useful to them all, especially since my husband's health is still not 100% brilliant.

And though these types of issues aren't super normal in your average family, they're not out of the ordinary in an oncology family or a Heartkid family.

I was looking back recently, when a person I know told us that they were expecting a child with Trisomy 21. I was looking at what helpful info I could give them, since they were still processing the news. What struck me when I thought about it, was that there weren't a whole bunch of tips and tricks I could pass on, because the things I know which are particular to Jacinta are things to do with hospitals and medical personnel - and Jacinta's medical history, while not unique, is not the norm for Trisomy 21. I know four children in Australia with a heart condition and leukaemia in remission and Trisomy 21. There would probably be a few more, but these are among thousands of children in Australia with Trisomy 21.

The thing that struck me most, above all, was that Jacinta is constantly surprising me with how normal, average and unexciting/unproblematic she is. (Though of course very charming, funny, clever and obstinate.)

Right now as I type she's mucking around in the lounge room with her sisters. If she gets bored she'll probably go outside and find something to do in the garden - ride in the red & yellow car or attempt to ride one of the tricycles which she can now reach with her size 1 legs. The things she's doing are not necessarily all normal for a three year-old, but they are completely appropriate for the level she's at. She's sometimes a mix of attitudes and abilities, so that makes life interesting, but it's so similar in many ways to bringing up individual children who differ in ability naturally, that it feels quite normal.

I'm not sure I'd see it this way if she was my only child being compared to other children, or my second being compared to my first. Having brought up two completely different children previously, the younger of which has significantly neater handwriting than her older sister, my perspective on ability and the spectrum of 'normal' was already reasonably expansive.

Our usual weekday often consists of dropping sisters to school, coming home, having a snack and watching a bit of Playschool. She'll get into an argument with me about wanting to use my iPhone. I'll say 'no' if I don't need a convenient distraction, and she'll stamp her foot and walk off with her arms folded. She tries to get into the pantry cupboard, she tells me when she's thirsty. She's learning to say 'wee wee' at the appropriate times and she's too grown up for the potty; she'll sit on the toilet, thank you very much.

She DOES NOT need help. If you dare to accidentally help her with something, Oh my Lordy, the dummy will be spat and whatever you did will be reversed so that she can do it herself.

All the 'look at what my child did' posts by parents on social media relate to Jacinta as they did with my older children.

 Ah, I was wrong; she didn't go outside. She started making prank calls to Daddy, who's interstate, with her sisters.

Jacinta looooves talking on the phone. I pretty much can't carry on a conversation in her presence because she'll be constantly requesting in progressively less polite ways to speak to the person on the other end - no matter who they are. She's even spoken to someone at 000 I believe, once or twice....

There's an awful lot of normal going on in our lives, now that her health issues are (touch wood) under control.

And I promise I'm not leaving out the less good bits. This is life at the moment. We're living the life of a 30-ish month-old, which is about right, considering she's had time off sick. And even if she was behind purely because of the chromosomes, that wouldn't matter, because every single child is building abilities on top of previously attained abilities. That is exactly what she's doing.

If your child is lagging well behind most others their age on a particular ability, you isolate the reason, remedy if possible and let them carry on building up that ability to a level that can sustain them long term. That's how it works with all kids, the ones with fluid in the ears, the ones that need glasses, the ones with sensory issues, the ones on the autism spectrum, the ones with cerebral palsy or who have had cancer treatment....the list goes on. That's how it is with Jacinta.

So I'm back doing NAET to try to reduce the fluid in the ears. The speech has come along since she's started the NAET and since she started dance classes. It's interesting, I use her interaction at dance class as a barometer for how well she's hearing. It's definitely improved since her hearing was checked last time. This is a busy morning; dance class and NAET appointment. That's the few hours a week I'm currently spending, and it's no much more than your average bored 3 year-old whose sisters are at school and is trying to fill in the days.

I plan to get her doing swimming. That'll be another hour a week. It really isn't a drain. The swimming times are around school pickup which might mean her sisters go to after school care - they'll be DEVASTATED. (Can you detect the sarcasm? They've been begging to go to after school care!)

I'm trying to get overwhelmed and upset about Jacinta's condition, and I just can't justify it!!

I know, I have no crystal ball and I cannot guarantee that her abilities won't plateau permanently next week, but for now, she's doing just fine. Anything else I can do for her - and I do plan to do more for her, particularly reading once her hearing is ok - is a bonus.

So, when sitting in my wheelchair at her bedside when she was one hour old, I never ever thought I'd be comfortable to let her be and develop as she might. I expected more trouble. How lovely that I was so wrong.

21st of Trisomy 2016

Hello All,

It's the 21st of Trisomy again!

Now, I'll be frank. There is one message I really want to get through to everyone.

Please, can we recognise that it is not the words that are the problem, it is the intention behind them.

You can call someone whatever words you like; it's the intention behind them that gives them their ultimate meaning and effect.

What's the difference between calling someone a retard and calling them cognitively impaired? One is said perhaps with antagonism, perhaps endearment, perhaps love, perhaps frustration. One is said with perhaps respect, perhaps disdain, perhaps love, perhaps frustration.

Several times over the past few years I've had conversations with my eldest and my middlest about the good old 'sticks and stones will break my bones but names will never hurt me' maxim. In primary school, I figure it's worth addressing this and building up resilience and perspective, since social media fast approaches and we'd best be prepared as well as we can be.

If someone's talking about you, especially if they don't know that you can hear them, or they don't realise they're talking about you since they're talking about a group that they don't realise you belong to; they might say all sorts of really insulting, poorly thought-out and hateful things. It can be very confronting to see what sorts of things can come out of the mouths of those you thought reasonable, intelligent and well-mannered.

With my children, they sometimes call each other certain things. Not so much names, but character traits. I have always had a hard and fast rule which is that they're only allowed to say 'you are' to someone if they're following it with a compliment because, if they're saying something negative, chances are that the person in front of them is not really e.g. lazy, mean, stupid etc, they're just having a moment.

Every now and then though, someone will slip up and one or the other will come running in and say, "she said I was a ....." and be very upset about it.  My response is always, "do you agree with that?" and they'll always say that, no, they don't. My next question is, "what if I called you a banana, would you be upset about that?" and they always laugh at that idea. I start thinking up ridiculous things, like an armchair or a quiche or a balloon etc and this shows them the idea that these things really are just words and the power they have comes from whether or not you agree with them yourself.

They usually try saying, "what if I said YOU were stupid?", and my reply is always, "It wouldn't bother me, because I'm not stupid and I know I'm not stupid", and this is the absolute truth.

So if someone was to call Jacinta a retard, I'm afraid we'd be in a 'takes one to know one' scenario.
For the record, no-one ever has. If anyone ever said retarded, well medically, her gross motor was quite retarded and is catching up, her speech is also to some degree retarded. Her growth was retarded but she is now a clear size 3 at 3 years, so she's definitely caught up there. If you call Jacinta a retard, you might as well call her a banana or a weather kite, and I'll be teaching her that, just like I do my other daughters.

Girls are called names. People perceived as weak are called names. You can either give the bullies a taste of their own medicine or rise above them and look down on them, pitying them for their simple-mindedness.

I've said before that I think aiming for acceptance and inclusion is setting the bar too low. I am not aiming for acceptance and inclusion for myself, because that implies that there's something wrong with me. I'm going for understanding and respect. If people don't understand and respect me, I have something to say about that, and if people aren't going to understand and respect Jacinta, her sisters and her friends, then I have even more to say about that, and I expect she will too.

Right now, she is fighting for understanding and respect in her own house. She is suffering from being a fairly non-verbal youngest sister, who is more likely to take the dolls and run off playing her own game with them than to take well-planned orders from her more sedate older sisters. She gets left out because of car seat logistics, having to go in Mum's car on her own when her sisters get to go in Dad's car. (There was a time when I couldn't leave her sight. The tables have turned, it seems!)

When this happens, the humpf begins, the hands go on the hips, the bottom lip comes up, the waterworks come on. She just wants to play, she wants to be part of the team. It's just that they don't get it and they don't respect her abilities yet. That will come. They're not discriminating against her chromosomes, they're discriminating against her 3ness. It's a little late in coming, my middlest had the same issue with my eldest when she was 1 or so, but I'm sure it will pass all the same, so long as she does gain the abilities she needs to gain their respect.

In our house, she's not just accepted, she's loved. She belongs. We understand the she is her own intelligent self and she's trying to work that body and break through the physical barriers to her expressing herself and her abilities. She is not just included, included though she is. (Excepting of course those choice sibling moments of frustration.)  She has the respect of every one of us when we think about what she's managed to endure and thrive beyond.  She has the respect of many people, both local friends and family, and around the world.

There are certain people in life that would never ever cop a 'retard' taunt, except perhaps in jest by their nearest and dearest. They command such respect that the idea is ridiculous.
So, first, let's go for respect.

Almost as a corollary, there are people around who will sling around inflammatory character judgements etc like they're going out of style and dish out  'bitch', 'wanker', 'nob', 'pretentious hipster', 'tryhard' etc. about people they see across the playground, at the footy, at school, at work, at church, at the bus stop etc etc add infinitum.

This behaviour is childish, it is at the root of every 'retard' you hear and when it goes unchecked, we start getting T-shirts with offensive slogans. We get these because we thought it was ok to deny respect and understanding to that guy over there, but think we have the right to insist upon it for our own child that someone else neither respects, nor understands.

So this cuts right down to the heart of Christian principles which, though many of us have moved away from the group, we were many of us raised by them and we know them in our hearts.
Love one another. You don't have to be all about Jesus to love one another. You don't have to be going to a church, or even know where one is, to see the guy on the corner as your brother. You don't have to even know the words to any prayers or any religious anythings at all to see any person alive anywhere and decide that that person is on your team.

If we're all on the same team, we start to see each other's characteristics as potential, not flaws. When you love someone you forgive them their faults and try to understand them and help them change. When you decide to love someone consciously, you do the same.

Just imagine if we all did it at the same time.

Wouldn't that be something?

So this March, perhaps, might we worry a little less about the terminology of hate, and focus instead on the practice of brotherly/sisterly love?

Three!

Yep. Three. And don't we know it!

Actually, she does  know it and when she feels like it she says it too!

So where are we at now? 

You'll notice that cake has Aldi "Smarties" (you'll have to google Smarties) on it. It was a gluten free, dairy free cake, with a little dairy in the icing.....  We've not been super good on the special diet. In fact, to be honest, we've pretty much fallen off the wagon this summer.

Still, it's quite obvious that Jacinta is reacting to fructose. She loses some of each meal when she's been eating apple, pear, peach, wheat etc. Serious reflux. Very messy! We need to get back to Maria to try some NAET on that one. No big surprise there, it runs in the family.

Now, what else do we need to do NAET on - not the heart so much, apparently. She's finally off all her meds!! Yaaaay!! It seems the heart has settled down since last visit to the Cardiologist. The left leak has improved and the heart is the right size. Super cool. Being off meds un-complicates things a lot. 

Jacinta wearing the dress her sister got the day she was born.
(After having eaten something very tasty)
While I'm reorganising the toys in the hallway! 

The big supplements question mark is hanging over our heads. There are so many different suggestions on supplements. We know that she has some degree of MTHFR mutation, from me at the very least. This means no folinic acid for her. She needs the good stuff. So any specific T21 multivitamin (of which there are a couple) need to have that taken into account. Then there are the things you could take because they might help, and the things you could take to circumvent problems which might crop up in the future, such as Alzheimer's. There are lots of them. Then there are things like probiotics, or Juice Plus (or equivalent, if there is one) to boost immune function.

Some people take everything they can. My goal is to find the exact right combination of the fewest things to achieve everything we feel we need to.

In terms of development, Jacinta's speech is coming along. She can say lots of things, especially mimicking me, which is obviously a part of speech development. She said 'cheese' in the supermarket today. She says 'shoes' spontaneously, because she is a girl. She also says 'nooooo' when I ask if she's tired for bed, because she's three. She runs away if I suggest it's bedtime, because she's three. She runs away if we're in the playground at school and I'm not looking. She runs away if I leave her outside the house without a locked gate. (For the record, I'm not making a habit of leaving her outside the house without a locked gate, but I did monitor her progress as she made her way in from the car behind me - our car is parked around behind our house - and she did make straight for the driveway and head for the street.) I guess when you've waited the better part of three years to master walking, you want to take the ball and run with it. 

And sometimes you want to ride in the pram.

This year I've taken my own advice and slowed down. I'm gaining back my energy bit by bit and I'm getting us off the gluten and dairy and really am going to tackle the sugar, salt etc and be making as much as possible from scratch. Not just for her, but for my energy, my husband's energy and my other children's health as well. It's time to start nourishing ourselves at every opportunity, rather than filling up here and there on rubbish. Cake etc is all very nice, but doesn't make for forward progress, and they do say that if you're not moving forwards, you're moving backwards. 

The one complication this year is that Jacinta's immunity may be impaired. Her lymphocytes (one type of white cell which impacts your ability to fight infection) haven't recovered properly since the chemo. They were heading slowly up and now they've headed down again. There's a chance that her partially removed thymus may be partially responsible, or it could just be something funny going on. Next visit we're checking them out more fully. If it's an immune problem they'll be suggesting she have immunoglobulins supplemented in winter time. I haven't even started checking to see how the supplementation of immunoglobulins will affect a person's immune function over time. Might worry about that when we come to it. 

The biggest change for this year is that our middlest is now at school. Being in the Southern Hemisphere, of course, the school year starts at the beginning of the year. This means that once again J and I have the pleasure of each other's company and each other's undivided attention. 

When people I was talking to about our middlest's impending school entrance realised that it would mean one at home, they would start to say 'so Jacinta will be getting some alone time with Mummy...' and I'm afraid I failed as a mother every time. "Coz we've never had any of that!" was usually my reply. If there's one person who needs alone time with Mummy it's our middlest, who is not only the middle one, but had me removed while she was three so she missed those little hours while your sibling is asleep. Following close behind is our eldest, who's entering a world where things are embarrassing and you get picked on for being any different from the majority. (AKA being yourself.) 

Thankfully she has some solid friends to help her through.

The fallout from the past few years' health issues continues.

So this year is a catchup year. Make up lost ground. Get my health in order. Get the other sisters' health in order. I've cancelled all extra-curricular activities so I can get some sleep. I even took a Facebook holiday because I was feeling too obliged by commitments on there. I keep a check on things every day or two, but I'm pretty much not getting into any discussions etc. It's a drain on my resources, and I realised that if my social life exists online, Jacinta doesn't have one.

I've started (well, am attempting to start really, we've had a few false starts...) a weekly play group with a couple of other mums with similar interests. She's started a 2yo dance play class. These will be her educational peers. She's keeping up, in her own way. We'll be looking at swimming lessons for Jacinta and we're finally booked in for more NAET next week.

Looking at J, her speech is improving, and she's clever and hilarious. She understands a lot, but can't necessarily say it. There's a fair bit of yelling at the moment! We also finally had her hearing checked. She had a cold at the time and her ears were completely filled with fluid. They did the fluid check and the graph should have been a mountain. It was a calm ocean. Blocked. Good news is no permanent damage. It's all middle ear. We're going back in 3 months and we'll NAET and be dairy-free and try to get to the osteopath again before that. If we're still fluidy we'll be referred to an ENT for potential grommets. I'm not super keen on grommets. Her Dad had many many many operations to insert and fix grommets. I think more than 10.

She's basically  presenting as slightly drunk at the moment. I'm hoping to sober her up by the end of the year. We haven't given up on the Institutes either! There are elements of the Institutes program in everything we do, but we're not officially working with them, though I'd like to be. I think it's a bite the bullet scenario. Might be a challenge now that Dad is working Mon-Fri a two-hour flight away.
We'll see!

And she's conquered her fear of the slide!

Everyone look at me!

The inevitable blog post about Stevie Payne

I tried to stop myself. I tried, really I did.

I tried not to say anything about Michelle and Stevie Payne, but I just can't help it!

https://www.racing.com/news/2015-11-03/stevie-payne-thrilled-by-sisters-cup-win

On Tuesday Jacinta's future got a little bit better.

I was out at my church, doing some study. Being Melbourne Cup Day (because nowadays in Melbourne most of our Public Holidays are for sports...) there was some (soft) bubbly and some chicken and salad and many a fascinator, and the cup was on the screen in the auditorium.

I didn't think much of it. I had a couple of horses in the sweep (a far cry from days gone by, when I'd study every race and put money on the horse with the best name in each - just on that one day) so I watched it, and it was about the closest race I've ever seen. So exciting, it seemed like it was anyone's until the last 20 metres.

And then when the race was won, I heard the commentators talking about someone being the first female - I was pretty sure they didn't mean the horse. It became clear fairly quickly that this was the first female jockey to win the race, which dates back to the 1860s. Her name is Michelle Payne, and her racing pedigree is pretty long.  She is one of 10 racing children of racing parents and the family has been in racing a long time.

So I was very happy to see that a woman had broken the glass ceiling of racing, a sport which is not loved by all, certainly not loved at all by some, but which has been quite soundly defended by a friend of mine who has worked around horses for many years, not in racing, so I'm not accepting comments either way on the rightness or wrongness of racing itself. I think I had a small tear of joy for her, and for my daughters.

Then as I watched, I saw that the person leading the horse around post-race clearly had Trisomy 21. I wasn't able to keep watching since I had children, namely one just-walking, lightning-quick 2 year-old to chase. Still, it became clear that this was the horse's strapper (basically a horse's PA for racing purposes), and for those of us who remember the movie Phar Lap (and have shuddered slightly on walking past his taxidermied body in the museum), we know that Tommy Woodcock was the no.1 person in that horse's life.

The strapper is so important a person in a racing victory that there is a trophy awarded, named for Tommy Woodcock, after each Melbourne Cup. This year, the winner of that trophy, was Stevie Payne, a 32 year-old man who has been working in the Ballarat stables for the last 10 years, and doing a darn good job by all accounts. He happens to be Michelle's brother.

I'm not sure at all how many of the people watching noticed him, or the diagnosis shining out through his facial features. I know that no-one was really watching the speeches at all, so no-one in that auditorium except Jacinta and me heard what he said in accepting his award. As I watched him, and after he had spoken, I was so overwhelmed by how life had changed in that 3-minute race.

If you were going for a Trisomy 21 Respect and Understanding awareness stunt, you couldn't have done it better. The whole country (with a few exceptions) watches that race. It is known as 'the race which stops a nation'. The whole country saw his horse win. Those of us in the country who watch the speeches saw a guy with Trisomy 21 get up and accept the trophy named after that legend, in exactly the same way the other guys accept it, for doing exactly the same job the other guys before him have done. No different.

His sister got up, was very gracious, thanked the right people and told the wrong people to 'get stuffed' (because it's not an easy ride when people are lobbying to get you replaced with a male rider and won't let you do your blinkin' job) and he got up, thanked the guys in the stables and everyone who came out to the race, hoped everyone has a great night and thanks very much.

In that moment, no-one could deny that here was a guy who had shown up, done his job, and walked away with one of the top awards for anyone in his mainstream profession. (This is one of the richest horse races in the world.)

And why did this make life a little better for Jacinta?

Because in 2017 she might start preschool. In 2019 she will probably start school. The big-kids-to-be at her school were probably watching that race, and kids like them saw a guy like Jacinta get one of the trophies. One day when she starts school and the other kids see her, if they know of no-one else with T21, they'll associate her with winning. If someone tries to negate her abilities or think less of her, the ones who've seen the Cup will have this memory in the back of their minds, telling them that what they say is not true. Couple that with the girl winning a boy's sport, and this one little race did an awful lot for my young lady with T21's future.

So for that, I say "Thankyou, Michelle and Stevie Payne, for showing up to work on Tuesday and doing your job. This Mumma will be forever grateful."

We're getting there, one step at a time. (And I've finally stopped bursting into tears at the thought!)

It's time we had a little talk....

Dear Parents,
October is Down Syndrome Awareness month.

It is also:

• Black History Month (United Kingdom)
• Breastfeeding Awareness Month
• Dwarfism Awareness Month
• Domestic Violence Awareness Month
• Dysautonomia Awareness Month^[44]
• Eczema Awareness Month^[45]
• Fair Trade Month^[46]
• International Walk to School Month (Canada)^[47]
• LGBTQ History Month (U.S.)^[48]
• Lupus Awareness Month^[49]
• National Breast Cancer Awareness Month
• National Bullying Prevention Month (USA)
• National CyberSecurity Awareness Month^[50]
• National Dental Hygiene Month^[51]
• National Disability Employment Awareness Month^[9]
• National Domestic Violence Awareness Month
• National Energy Awareness Month
• National Fire Prevention Month^[52]
• National Infant Loss and Miscarriage Awareness Month
• National Information Literacy Awareness Month(Ironically, that one under all that blue scribble is National Information Literacy Awareness Month)
• National Italian American Heritage Month^[9]
• National Hispanic Heritage Month (U.S.; September 15 to October 15)
• National Outdoor Lighting Month^[53]
• National Pharmacy Month
• National Physical Therapy Month (USA)^[54]
• National Pit Bull Awareness Month
• National Work and Family Month^[55]
• Pastor Appreciation Month
• Polish American Heritage Month
• Raynaud's Awareness Month
• Rett Syndrome Awareness Month^[56]
• Selective Mutism Awareness Month^[57]
• Spina Bifida Awareness Month
  
  October sure is a busy month!
  
  Given that you're reading this blog, I'm going to assume you're aware that in my opinion, Down Syndrome is an outdated term with outdated stereotypes, and I expect Trisomy 21 (where the symptoms are being redefined) to replace it by the time Jacinta is old enough to correct people herself. 

 I'm also going to assume that you're aware about the people with Trisomy 21 who read, drive cars, have valid opinions, work regular jobs, get married, have children, graduate from university, generally carry on with life without any ado. Also, of course, I assume you're aware of the growing number of child and adult models and actors generally impressing people out there. 

I'm also assuming you to be aware of my opinion on the striped socks thing. 

What I am not going to assume, however, is that you are aware of the "oxygen mask" phenomenon.
This is the phenomenon well known to airline staff, the one where parents are so intent on getting their children's oxygen masks on that they don't get the oxygen they need, and everyone suffers, the child included. It's so important that they tell us every time we fly, and we listen and we say to ourselves, "of course, that makes perfect sense". And then we give birth to a child with health issues and do the exact opposite. 

When your child is born with health issues, you immediately consult your practitioner, and usually very specialised ones, to find out what needs to be done to prevent permanent damage to your child's health, such as brain damage, hearing loss or dying, for example. You don't think twice about it. Your needs are pushed aside. You're the big one, the fully grown one with functioning bone marrow and a fully formed heart and lungs. 

This is how it always goes, because we'd do it for any of our children in a time of crisis. The crisis is dealt with and you go back to a more relaxed pace (not that I'm insinuating that anyone's actually relaxing here) but it's just a bit back from frenetic racing around or intense standing still, constantly on your guard.

The last three years have been, in my house, a bit ridiculous. It started with the sudden turn in my husband's health when I was about 6 months pregnant with Jacinta (and being pregnant with two other children demanding your attention isn't fun and games to begin with), through her initial hospitalisation, through the 'let's keep the weight graph trending upwards' (breastfeed, express, tube feed, repeat, every three hours - with a 4-hour window at night) before her heart surgery, through the IAHP training and the attempts to get the household in the one place at the one time to get co-ordinated to start a program, through the constant vigilance while the bleeds and bruises and tiredness were showing her illness despite the Dr's reticence to put her through a blood test (ha ha, in hindsight), through the diagnosis and sudden admission and weeks on end in the hospital, the family separated more than ever before, having to sneak out for a couple of hours to be there for my middlest's first day of kinder, having to see my two older girls and husband off at the airport so they could represent us all at his brother's wedding in England, staying home for 9 months to avoid catching anything at a gathering or at the shops, through being told on the day we were released from our last leukaemia-related admission that she needed surgery before the end of the year, through the waiting and waiting, and getting pushed back and putting everything on the calendar in very light pencil because you just can't commit, through the winter admissions while she was struggling to breathe with a bit of croup, through the second heart surgery with its twists, turns and sleepless nights like never before. 

This all finished about 3 months ago, and I kind of feel like I'm still there, in all of it at once. 

The thing is, about a year ago I had a cold. Not that badly. I think I had one day which knocked me flat, but after that it was just a normal cold. That illness sapped my energy right out. It gave me dry eye also. I went to the Dr about the eyes and the tiredness a few months later and she wrote up the eye drops and said I was probably tired because I was still breastfeeding. I hadn't considered this, so I considered it. 

When you haven't got time to think, and keep forgetting to make your children's appointments, you have Buckley's chance (none) of getting any appointments booked for yourself. Having mental fog and tiredness doesn't help either. 

I got to a point of being sick of it and deciding to look for someone who could get to the bottom of it so I can sort it out. A friend recommended a Dr in New Zealand. I booked in for a phone call. There was a 2 month wait. I waited. We chatted and she suggested I see another Dr about an hour from me for bloods and then contact her again if I still wanted to see her. I booked in with that Dr. Another 2 month wait. I went along and she had some very interesting suggestions re my health issues and sent me for bloods. On my return a few weeks later I found that she was spot on, my zinc and B6 were super low, my iron wasn't brilliant, nor was my magnesium. I had also requested to be tested for a gene mutation called MTHFR and the bloods confirmed that I had it from both my parents, meaning that my ability to methylate folate (which bodies do) was impaired by 70% (and that's as badly as it can be). Bloods also showed that my adrenalin was basically nonexistent. (For this to show up on bloods means that your adrenal glands are in serious trouble.) 

I'm in the process now of supplementing to sort out these, which is tricky apparently, when you try to supplement zinc with poor adrenal function. There are good days and bad days....

Still, my situation is fairly ordinary. Another friend of mine was diagnosed recently with breast cancer - a really aggressive lump that blew up in size in the two weeks from seeing a Dr to getting it out. Thankfully it seems to be all out, but it's a scary situation. This is a Mum who's had a ridiculous amount to deal with, none of it medical, up late finishing documents for lawyers etc. 

There are several others I know of also who have had to rest their adrenals so they can begin to function again. These parents are just exhausted, maybe just from worry that they're not doing enough, maybe from staying up too late blogging or chatting with other parents on facebook, maybe from tension at home or trying to be the perfect mother to their other children, one who can do it all - because they always used to...

I know you are aware that your child is as unique, in all ways, as all children are. There is no one defining characteristic for all people with Trisomy 21, except that they have a trisomy on the 21st chromosome - and I don't know anyone carrying a copy of their genetic tests around to show people. 

I know you are aware that the possibilities for your child are endless, and the only definite thing limiting them is the same as for anyone else, the idea from their mind or someone around them that they are limited. 

Please also be aware that you have to apply your oxygen mask first. I'm not going to insult you by suggesting you need to go for a facial or some other 'me' time while your child sits there at home having not met his potential yet. I am suggesting though that you go and get a checkup. I am suggesting that you take care of your diet and draw a line in the sand at 11 - or even 10pm and go to bed. I am suggesting that you confront any issues you may be having with your partner, your friends, your life in general, and sort them out sooner rather than later. I am suggesting that you (perhaps bit by bit) regain control of your life and be the one in the driver's seat in whatever increasingly bigger way you can. 

If you've dropped the ball on your own basic wellbeing, now is the time to do something to sort it out. Not tomorrow, now. I give you permission. Don't be the guy who misses the signs and winds up so unwell your child can't have you around to take care of them. Be the healthy one, who goes on and on because they have a check now and then and make healthy life choices. 

Now, I'm off to look up Dysautonomia....

NO, I'm GOING TO BED!!