#blogjune2013 Day 9: In which I meet some unexpected issues

A few posts back I mentioned Mr9's tentative diagnosis of dyspraxia. Since then we have been trying to move forward with testing and finding ways to help him.

We have been helped by the SPELD association who gave him a comprehensive test that revealed some strengths and weaknesses. He now has a SPELD tutor who works with him once a week.

A friend has screened him for Irlen and we see a diagnostician this week.

I am still trying to find an OT for him that will help him and hopefully give a definitive diagnosis. The closest one is too busy - too many ACC cases.  Another recommended one has yet to get back to me so I fear the same will hold true of her also. I may yet have to find someone myself. As this is one of the key things he needs I am feeling frustrated!

It has not been cheap either and he doesn't qualify for any funding.  It worries me that it will be difficult for us to get assistance like reader-writers when his condition is not considered "severe" enough.

One good thing is that the school have been very helpful and co-operative.  His teacher has a 2 other students with learning difficulties so she is open to exploring ideas and ways to deal with this.  Additionally, she is trying to incorporate some elearning into the class which is a challenge in a small school with limited funding.  She approached us about the possibility of purchasing Mr9 an iPad as she has found some of the apps useful in assisting her to teach her students with learning difficulties - the other 2 in her class have them.

We were hardly a "hard sell" given the geekiness of our family so we agreed and today Mr9 got an iPad2 (wifi only).  It will live at school most of the time, locked away in a secure place when not in use. It can come home when he wants to bring it home though.

Here he is "unboxing" his iPad.

We needed to set an email for him as some of the work he will do on the device will be emailed to his teacher rather than submitted on paper.  We assumed a gmail would be fine, but we discovered he is too young for one!  We went back and forth about options and in the end we found Yahoo! allows a child account if you set up a "family account" arrangement.

I am just hoping we'll be able to find a similar thing for gmail because I suspect he will need to use some of the Google apps like docs.  Perhaps the school has Google for schools?  I don't know but will have to find a way to work around this.  In the meantime, the Yahoo! address will have to do.

One of the apps I installed for him is the Overdrive one for borrowing library ebooks and audiobooks.  Of course, it needs to have an Adobe ID.  Mine has been used on too many devices so I had to make one for him as well. 

It both amuses and alarms me that Mr9's digital footprint is already growing as a result of this purchase we've made.

Here are my loves heading out to this morning's fellowship. Miss6 is not impressed she didn't get an iPad.  Mostly because she wants to play Fruit Ninja.

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

taken from this site

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