Sunday, 20 March 2016

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?

Thursday, 10 March 2016


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!