Saturday, 14 March 2015

March Forth!

So March is here.
March is the month with one big day in it.
21/3, which in American is 3/21. This is code for Trisomy 21, which is why the ancients who devised the Gregorian Calendar (Pope Gregory XIII) put a 21st of March in the calendar, simply so we could have a day devoted to Trisomy 21.
We'll be away on holiday on the 21st of Trisomy so I thought I'd blog now.

And I have to say, I'm torn. I'm horribly torn as to whether or not these days are a good thing.
The trouble with these days for things is that they highlight things as being something we need to be aware of, because people don't understand them, or because they need to be fixed. There's a brokenness associated with things that have a day devoted to them.

There seem to be several ways that people approach these days.
There is the 'look at my child whom I love, see why I love him', post.
There is the 'look at my child who deserves 'just as much' (insert noun here) as any other', post.
There is the 'look at my child who has feelings and dreams etc just like any other person', post.
There is the 'look at my child who I want to be accepted and included', post
It's rare to see any kind of 'look at my child, who deserves respect and understanding, as you do, who has the potential to do what you do if given the help from the start, who will only be held back by your judgements and suppressions and not by his/her inabilities', post.

What I see so far, (and it's understandable I guess considering that mainstream medicine in general, and tabloid media also, are on the warpath and would like to see people with Trisomy 21 done away with before they see the light of day), is a lot of people still on the back foot.

Maybe I'm lucky. I've never had some random stranger at the shops sneer at me or call me selfish for not aborting my child. I've never been told off by a Dr for declining genetic testing. I've never had people say mean things about Jacinta or seen kids exclude her. (Her sisters' friends actually fawn over her.) Maybe that day will come, but I'm working on that day never coming and if I have a say in it, that day will never come.

Many parents talk about inclusion rather than respect. They talk about acceptance rather than understanding. They say things like, 'just as much', which implies less rather than more.

Back in October 2013 (I think) I referenced a news article from the US where the Homecoming King and Queen from a high school both had Trisomy 21. This was not about acceptance or inclusion. These kids were the most popular in the year and they had the respect of their peers. This was no charity case. They earned it. It's not unusual for people with Trisomy 21 to be very popular amongst their neurotypical peers.

Most late teens/young adults I've seen with Trisomy 21 are heading into the work force or going on to university.

It is understanding which enables them to show they are worthy of being given the job and they generally command respect when people see them doing their job or going about their daily lives.

This is the very reason why I just don't use the term Down syndrome anymore. As far as I'm concerned that term has passed its use by date. The list is useful in diagnosis. If doctors know the list, they might see a few things from the list and suspect a Trisomy 21 case. Once they've tested and found a positive, the list can go out the window - except in terms of being a useful predictor of things for parents to watch for in terms of early intervention. (And as a side note, in re-checking the list I'm pleased to see that many websites have been updated since Jacinta was born, and 'mental retardation' is not only absent but its much more pc equivalent, 'cognitive impairment', is not listed as 'in all cases' any more, but is listed as a mostly and mild to moderate. I'm expecting that to be updated again before Jacinta hits adulthood.)

There are so many ways to intervene now. There are your basic physio, speech and OT. There are neurodevelopment courses like IAHP (the original and, in my opinion, the best). There is targeted nutritional intervention (TNI) with things like Nutrivene D or MSB.  There is NAET. There is Osteopathy. There are so, so many other nutritional things. There is fabulously successful heart surgery. There is fabulously successful leukaemia treatment. There are many other things for the many other things that can crop up.

The work that John Langdon Down did with people with "The Mongolian type of idiocy" (which, to be clear, he didn't mean that Mongolians were idiots, just that he had classified the types of 'feeble-minded' people in his care into different ethnic classifications, based on their physical features, not their country of origin) was quite respectful and thorough. He made some interesting observations. I'll post the link below. 

His classification was a breakthrough and it would have been great, had it not then been used for the next hundred years as a tool for diagnosing and writing off children from birth (and now before birth) as hopeless cases. In his article, there is no talk of hopelessness. There is talk of the work he has done and what he has observed in helping these people develop as best he can. Had he had NAET, TNI or IAHP at his disposal, or even modern physio, speech or OT, I'm quite sure he would have jumped at these therapies to try them out and see what he could achieve.

Still, since we found that there is a chromosomal difference, which seems to have nothing to do with tuberculosis in the parents but I'm fascinated as to why that might have been his suspicion, we could see that there was something actually going on in there and people have started asking more questions. 

Now IAHP didn't start treating kids with T21 because of any genetic discovery, it was simply by chance that Raymundo Veras felt compelled to write a program for an insistent staff member whose child had T21 and who later brought that child in to show Dr Veras the results, prompting him to treat other kids with T21. It actually took him years to convince Glen Doman to come and look at the progress these kids were making, because the medical view was that these kids had deficient brains. That's just what everyone thought. Now they know that 'Veras kids' respond really well to the programs and they find that they're very clever. 

NAET wasn't particularly geared towards treating kids with T21 either, it was because one mother with a child with T21 took him along, trying everything she could think of, and they pushed the envelope. They contacted NAET central and had new vials made for things they wanted to try treating. Since then the NAET practitioner has been to the international symposium and done a presentation on NAET's usefulness in treating T21 symptoms. 

So far there is no way to treat the T21 itself, but there sure are a lot of ways to treat the symptoms. There are so many different ways it can make your head spin, since you can't possibly do them all and it's very easy to get special needs parent anxiety, that feeling where you might not do the best thing for your child, from overlooking or underestimating something or putting all your eggs in the wrong basket. We only have so many eggs each, it seems. There are only so many hours in a day. 

So when we're all out there, so many of us now looking at the myriad of things available and the results possible (not guaranteed, but possible), and expecting some kind of pretty normal existence for our children, why then are we advocating from the back foot?

There's a part of me that is all for the 21st of Trisomy being celebrated as such.
This part of me wants parents out there to show their kids off and be really cocky about it.
This part of me wants parents bragging the hell out of what their kids can do.
I want to see the really fabulous examples of adults out there with T21 plastered all over social media, because these are the guys who didn't have what we have today, and they still have made it this far.

We now have so many things that were nowhere near around 20 years ago. Our kids' potential is completely unknown. There's even a chance that with awesome nutrition, a fantabulous neurodevelopment program which includes reading, maths and intelligence on top of mobility and the rest, the right education and respectful environment in which to thrive, our kids with T21 will be all over our kids without T21. Who's to say?

So I don't do odd socks for T21 day, I think that gives the wrong idea. I know it's meant to look like the chromosome, but to me it signifies an inability to dress properly.

I don't know what my plans are for that day, but if I do anything, it'll be to do with high fives and awesomeness. It'll be celebrating the things people can do and what they may be able to achieve in time. I really think it's time we got on the front foot and got cocky, for our children's sake. If I can change the environment Jacinta will grow up in before she has to navigate it for herself, that's half the battle won right there.

So please, please, can we swap acceptance for understanding? Can we swap inclusion for respect? Can we set the bar higher and go for what we really want, rather than settling for what we humbly think we're entitled to ask for?  If my children deserve respect, they all do. If my children deserve understanding, they all do. The ones without T21 just as much as the one with.

These older girls love popcorn almost as much as Jacinta does...

Here is the link to John Langdon Down's article.
Be warned: It's called "Observations on an Ethnical Classification of Idiots". It was 1866.


  1. Every child deserves love, drop the labels and just love them

  2. I couldn't agree more. We are achieving so many amazing results with all of these alternative therapies…people can scarcely believe it. But I think the most important piece has been our perception of our daughter. She is not different from our other daughter because of her diagnosis, she is different because she is a different person. Plain and simple. We stopped using the term Down syndrome almost immediately after she was born. Occasionally we use T21, when referencing medical issues, but even that isn't so prevalent any more. We just see HER, and whatever her needs are, they are - same goes for her sister. In my opinion, all children have special needs, because all children are special. And I don't make any apologies for having equal expectations for both of my girls' futures.

    1. Yes, I rarely mention T21 either, and when people look surprised that she's 2yo at her size etc I just explain the heart defect and the leukaemia. I agree also re the perception of her. The parents I've spoken to whose children I was most impressed with have all had the same opinion. Just treat them the same as your other children and expect the same from them.

  3. I have always hated the odd socks campaign. not only does it signify the inability to dress properly but it also singles people out as being odd or different.


  4. I just found your blog after first reading one of yours from a couple years back. In the older blog you had mentioned you tried glyconutrients. Did you find that they helped Jacinta at all?

    1. Hi Dorothy,
      It's hard for me to definitively state whether or not glyconutrients helped Jacinta and in what way.
      The main reason we used glyconutrients from birth was that we had read that people using glyconutrients had improved their heart defects. Jacinta did have some holes in the heart close spontaneously, very small (about 1mm or so) but the larger ones (5-8mm) did not close. They were just too big.
      The other reasons for using glyconutrients have been for improved immunity and for facial development. Jacinta was fairly robust for that first while and she often didn't look like she had Trisomy 21 at all.
      Now I stopped using supplements once I started breastfeeding again, mostly because it was much harder for me to supplement breastmilk and we hadn't made it far onto solids by the time she had leukaemia, at which time she was almost exclusively on breastmilk.
      SInce the leukaemia I haven't worked out a good way to begin supplementing again, nor have I properly worked out what supplements I want to give her. Glyconutrients are at the top of the list, since they're so easy, natural and not found in any other supplement.
      We still continue with the NAET, which is as likely to have been responsible for the things mentioned above as glyconutrients.
      I think they really are a case by case thing. Since T21 expresses itself differently for each person, I think some will find that certain supps work whereas others will find that others work.
      (I saw the duplicate copies of your question below and have deleted them)

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