Student and Therapist Newsletter Archive
   - Down Syndrome

+ Question about Down syndrome. - April 06

***QUESTION***
John, thanks for these emails, I enjoy them and find them useful. I have a question: Is there anything that can be done for a newborn with Mosaic Down Syndrome, where some chromosomes are affected and some are not, given that it is apparently a chromosomal disorder?

As I understand it, Mosaic, means that it is a less severe case. Is there an "esoteric purpose" i.e how does this affliction serve the individual or the mother?
Sandra Newland
Brisbane.
PS. Please thank Jenny for her story - it was a great description of the treatment process and very moving.

>>>MY COMMENTS:

Yes, Down Syndrome is a genetic disorder and as such it would be a big ask of the body to change from and I'm not even sure if it would be an appropriate question to ask.

The mosaic part of it means that about half of the baby's cells are 'Down' cells. That could mean that the baby is having second thoughts about the whole down thing and you could definitely assist if it chose not to.

'What?'

I'll explain . .

Let's say you're a kid and you like to run and jump. All day long you run and jump around this big field. Running and jumping, jumping and running. Man, you just love to run and jump.

'Lovely. Great. What has this to do with Down's?'

Then let's say one evening you're looking at the telly and you see the 400m hurdles race at the Olympics. You're mesmerised as you watch the race. This is running-and-jumping heaven.

As you look at it you hear a voice in the back of your head saying, 'I wonder? I wonder if I could do that? I wonder if I could do that in the same way they're doing it? I wonder if I could be as good as that?'

So you find your local athletics club and join it and you begin to practice. In time you become good enough to qualify for the state team and eventually you become good enough to make it to the Olympics.

If we look at it from a different perspective we could say that you have voluntarily taken on a series of limitations to help you answer a question about yourself. The question being, 'I wonder how good I could be at that?'

The voluntary adoption of constraints for the purpose of finding something out about yourself.

With me so far?

'Not really.'

Now hold on to that idea while I ask you some questions. As you're thinking about the answers, I'd like you to discount any answer that comes to you that someone else has told you or anything you've read.

'I don't understand.'

Okay let's say I asked you if you knew for definite that America existed.

'Yes it does.'

Hang on, I haven't asked you yet. Let's say you've never been to America.

'But I have.'

Okay tell me somewhere you haven't been.

'Jamaica..'

Okay, let's say I asked you if you knew for definite that Jamaica existed. Before you answer I'm asking you to discount anything you've read about Jamaica or anything anyone who'd been there had told you about Jamaica..

Get it?

'I think so.'

Leave out any answers you've been told or read.

'Right.'

Okay here are the questions.

'About Jamaica?'

No the questions I was going to ask you initially. The Jamaica thing was just and example.

'Oh I see.'

Okay are you ready for the questions.

'Yes.'

Why were you born a man or a woman?
Why were you born the race you were born?
Why were you born in the country you were born in?
Why were you born to the parents you were born to?'

I think if you're honest, you have to admit that you don't 'know' the answers to these questions.
The funny thing is, we all have a sense that there ARE answers to these questions and the answers are NOT random.

I discovered, through working with people with life threatening conditions, that in the same way that the kid went to the Olympics to find out something about themselves, our lives are about finding something out about ourselves. What we are trying to find out is an extremely personal question for each of us.

The four constraints I asked you about in my questions, your sex, your race, your nationality and your parents are part of the constraints we voluntarily adopt to help us explore the question we have about ourselves. These four are just the tip of the iceberg of constraints we have voluntarily adopted to help us.

How often have you wondered at the apparent synchronicity of events in your life.
Why that thing happened as against the other thing happening?
Why this person and not that one?
Why was that done and not something else?
The different things that happen to us are tailor made to help us with our question.
The different constraints we adopt are individual to each of us.

All except one.

The one constraint we all share is we don't know what it is we're trying to find out. We don't know what our question is.

As to why that is I can only guess that it's similar to reason we get upset if someone tells us the end of a movie. Particularly if it's a movie we really wanted to see. Even if they tell us that the movie has a happy ending. It still feels like it's ruined.

Let me take a moment here to highlight that point. Even if the ending of the movie is a happy one we still feel like we've been gypped in some way. It sort of follows then that we are more interested in the watching of the movie than we are in the happy ending.

I'm going on about it because it's an analogy for life. I think one of the possible reasons we don't know what our question is is because we're more interested in the living of our life and the exploration of that question, than we are in knowing the question.

In my experience, there is a deeper part of ourselves that does know what our question is. It has known from the beginning. It looks out into our lives with what could be described as dispassion, though I don't think that's what's really going on.

It has a VERY broad view of our lives. It knows that in 200 years we'll be dead and no one will know us. We might be remembered as a two dimensional historic figure but no on will know us in the way we are known by the people in our lives who know and love us now.

I don't mean to bum you out but that's true. We know this too of course but we often live as if we don't. We live as if we have all the time in the world.

That deeper part of us is a bit like a compassionate Clint Eastwood. Eerily quiet. It never actually speaks directly to us but yet it never lets us forget about our question. It doesn't care about the silly sort of things we care about, like life and death and food and security. It will break up our marriage. It will have all our money taken from us. It will make us sick if it needs to get our attention.

That's why I say it can appear ruthless but the reality is it knows that our lives are very transitory and the whole point is to explore this question we have about ourselves. So it forces us to keep facing it, even when we don't want to.

Whether you are working with an adult or a child makes no difference. This question is something we all work with from the beginning to the end of our lives.

In most cases you won't have a strong sense of what the person's question is and that's okay.

Remember this is a very private part of a person and information is given on a need-to-know basis. If you get any insights about it, it will be because you were given or allowed them by that deeper part of the person.

So you remain open to information about what the person's question might be while being VERY humble and respectful of anything you receive about it.

As you look at the situation with the Mother and the child with the Mosaic Down syndrome, look at it from the perspective of a concord of questions. Try and get a sense of how the questions for the different relate to each other and how they all fit together.

For the child itself, be open to feeling if it is in harmony with it's question. Hold the perspective that being Down syndrome is a constraint that this child has chosen to help them with the exploration of their question.

As I said at the beginning, the fact that it's Mosaic Down's could mean the child is not sure if they want to go fully into it. It could also mean that they have chosen this specific form of Down's for a specific reason and are in harmony with themselves about it.

I know the people I've treated with Down syndrome have had a happy harmonious quality. I always felt happier myself just being around them.

On a practical level you need to be very careful around the back of their neck as the muscles and tendons in people with Down's are weak there.

If you feel the child is not in harmony with it's question, then further open your contact to what it might need to help it come more into harmony.

For the parents, you need to view the child's condition as one of THIER symptoms. Try and get a sense of what the child's condition means in the parents lives and how it might relate to the parents question.

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