Wednesday, April 17, 2013

We've ended up in Holland

You may have read this little story before.  Now I find it even more poignant because this is now our journey.  It looks as though Mr9 has dyspraxia.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley
While this story was written with more severe disabilities in mind, it does reflect the feelings that have been running through my heart.



Don't know what dyspraxia is?  No, we didn't either.  It's not something that is discussed as much as dyslexia, autism, or ADHD.  The incidence of dyspraxia in New Zealand hasn't been determined but could be between 6 -10%

This is the explanation for children on the Dyspraxia Support Group of New Zealand's website.
The human brain is made up of lots of connections that are like power lines. These also connect with your body.

When you have dyspraxia some of these connections are not working properly.

This means your body can find it difficult to do what your brain tells it to.

In order to make your body do what your brain is telling it to, you may have to practice doing things a lot.

This is why you may find it difficult to:
  • learn new things
  • concentrate
  • handwrite
  • speak clearly
  • speak your ideas
  • get dressed
  • think fast
  • play sports
  • organise ideas
Having dyspraxia does not mean that you are not intelligent.  A lot of people who have dyspraxia are very intelligent.

It just means it may take you longer to learn how to do things and to remember how to do things you have already learned.
How does it happen? This is unclear.  The books and websites I've been reading don't have a definitive answer. 
"According to the Dyspraxia Foundation, dyspraxia is said to be the result of an immaturity in the development of the neurons or nerve cells in the brain, rather than brain damage.
For most people with the condition, there is no obvious cause. There are many suggestions as to why this might have occurred – perhaps lack of oxygen at a crucial period in pregnancy, or even a viral infection at the time, around the fifth week, when the baby’s nervous system is beginning to form. A genetic element may be involved. There could be an inherited tendency in the family towards similar neurological disorders."
Eckersley, J., (2011). Coping with Dyspraxia. London: SPCK, p.2 

How did we find out?  Mr9 met all his developmental milestones in terms of crawling, walking, talking etc so it wasn't until school that we came across some indications of something awry because his learning is affected.  His Kip McGrath teacher was the person who picked it up.  Looking back I can see now there were indications prior to school, but we didn't recognise them for what they were.

Photo Credit: Plamen Stoev via Compfight cc 

At this point in time we are gathering information together to get some assessments happening.

I am still learning about what this will mean for us.  I am very grateful that this is not a life threatening disease.  I am grateful that in most areas Mr9 is a normal healthy, happy boy.  He just faces some challenges that other children don't.  Because it doesn't show on the outside, it is difficult for others to realise there is something different.

I don't want to over dramatise the situation or begin to define him by his dyspraxia.

I don't want other people to do this either. 

My research so far has indicated that on the spectrum of dyspraxia, Mr9 is probably not too badly affected, but until the assessments are completed there are a whole lot of things I don't know.  Fear, uncertainty and doubt (FUD) keep coming round to bother me.  I'm not sure how this is going to work at his school, with his teachers.  It would seem there have been instances of other children at school picking on him because of his clumsy ways and his differences. What about higher education? What about...

I'd appreciate your understanding while we learn about Holland. It's not where we expected to be.  It's not where we chose to be. But it is where the lines of our lot have fallen.

Photo Credit: Vainsang via Compfight cc

7 comments:

  1. Dear Penny, I wish for the all best type of news in Mr9's assessment. Thinking of you and your family x

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  2. Penny, good luck with Mr9's assessment.

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  3. Thinking of you Penny, and all the best for the assessment. Hugs xx

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  4. I know a couple of people whose kids have Dyspraxia, one of whom is now a gorgeous independent young adult completing a PhD in Science. Sending you much love.

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  5. Well I have written in this comment section and deleted several times as I struggle to find the words to convey what I am feeling. I am thinking of you and your family at this time and I hope those assessments will help alleviate some of the(FUD)that is consuming your head space at the moment. I am also looking forward to reading about Mr 9's upcoming achievements of which I know there will be many.

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  6. Thinking of you as you discover what this is all about. We come across this and other learning difficulties quite frequently now for some reason. I can recommend to you good Educational Psychologists if you are going down this track of assessment. At school we refer to these types of things as learning preferences or differences - rather than disabilities. It'll be important your school recognises and actively supports him in learning strategies to manage. With love, Amy

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  7. Thinking of you and Mr 9. He has all the things on his side......loving, caring parents. Take it gently. Listen. Read. Question. And give him a big hug from me xx

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