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

Dinner time conversation

Picture the family eating dinner calmly together. Mum and Dad talking about something inconsequential.
DS bursts into heart rending sobs.
All turn to look at him in surprise.

Me: What's the matter sweetheart?
DH: What's up mate?
DS between sobs: I love you Mummy! Don't die! I don't want you to die! I love you!

Me taken aback to say the least: Um... I wasn't planning on dying just yet darling.

Later I tried to find out where that came from. I'm still not sure but I think I'm going to have to watch what I say in terms of my death.

Death is something my family aren't afraid to talk about - in fact we have a very pragmatic approach to it and sometimes even joke about it - but I think DS might be starting to understand what it actually means.

One year today

Today our baby is one year old. It's 4.00pm now... a year ago my contractions were just starting to settle into a pattern. Her birth story is here.

From that helpless bundle we now have a (nearly) toddler! She is taking more and more steps with increasing confidence.

In her honour - 3 layouts I have done over the past few days.

Local Government

Sometimes we rant at the local government and their decisions. Like when they closed the branch library just up the road from me because it wasn't considered cost effective to run. Now instead of popping the kids into the pram to get some books or make a quick drop off, I have to get in the car and burn some fossil fuel instead. I know they have a mobile library stop there now, but as much as I believe in mobile libraries (in the wild as it were) they are not the same as bricks and mortar. Especially when you have 2 pre-schoolers. I was also disappointed they didn't take my suggestion of setting up a book drop in the local supermarket (situated beside the library site) so people could drop off books when the mobile library wasn't there. I thought that was quite a neat idea and a chance for a great example of community co-operation and initiative.

Not happy people. Not happy.

But this made me happy. Having driven to drop off some books I noticed a small room next to the branch library labelled Cloth Nappy Education Centre. At first I thought it was a weird name for a child care place but upon closer inspection I see it really is as the name suggests. The council is subsidising the hireage of cloth nappies and teaching folks how to use them. I'm impressed that for once our eco-city is putting it's money where it's mouth is.

World Breast Feeding Week

Thanks to Amy's blog I discovered it's World Breastfeeding Week in August.

Here's a quote about it:

What is World Breastfeeding Week?

World Breastfeeding Week (WBW) is August 1st – 7th and celebrates the signing of the Innocenti Declaration** on the Protection, Promotion and Support of Breastfeeding. It is celebrated in 120 countries on various dates.

* According to WABA, "Initiation of breastfeeding within the 1st hour of birth is the first and most vital step towards reducing infant and under-five mortality, by reducing the overwhelmingly high neonatal mortality rate."

** The Innocenti Declaration was produced and adopted in 1990 by participants at the WHO/UNICEF meeting on “Breastfeeding in the 1990s: A Global Initiative.” The document lists the benefits of breastfeeding, plus global and governmental goals.

I've been fortunate that both my kids have been able to benefit from good ole human milk. For me it is as much about convenience as the Good Things that are in breast milk. Learning to breast feed was difficult at the beginning and it took me about 6 weeks before I felt confident with it when DS was born. Luckily for me DD has been really easy to feed, and apart from a couple of blocked ducts I've had no trouble this time.

I know that breastfeeding isn't always possible and I don't think that formula is Evil Food from the Dark Side. But if someone asked my advice about the choice I would strongly advocate breast feeding.

Amy has a photo contest going to celebrate WBW if you'd like to enter.

Where is the strangest place you've breast fed? I think for me it would be at the lookout at Waiere Falls down near Te Aroha. We'd just walked to the lookout so DH could take some photos and DS decided he was hungry.

Update

Like I mentioned in my last post, life has been very busy this past week or two. It's time for an update!

DS started kindy last week. He liked it so much he didn't want to come home! I only needed to stay the first morning with him. The next time he dropped his bag at the gate and was off. He was totally committed to getting on with the activities and Mum was no longer of interest. :-)

I am so glad to announce that we've finally got the potty thing sorted. True we have occasional accidents when he gets busy but he only needs nappies at night now. Yay! Big relief for me who had visions of school days with pull ups.

DD has started teething poor girl. You can just see the offending article peeking through in this picture. She got the first two in a space of 2 days. Goodbye gummy smile! :-( Hello Bonjela.

She is 4 months now and weighed 6.5kg at her last Plunket visit.

DH has gone to the States for a week to do some training and I'm ready for him to be back already! I can cope pretty well but it's so much nicer to have a second parent, not least because it's another adult to talk to! I find my patience is so thin these days I need time out myself. I just hate myself when I don't respond well to my children's behaviour. DH's presence keeps me on an even keel.

He was told on Tuesday last week that he would be flying out on Sunday (4 days notice). We had to rush out and get some new work trousers for him because 2 pairs disintegrated at the same time. Luckily Farmers were having 30% off men's clothing and we found some that passed the "Crouch Test". This is an important test. DH does a bit of lifting in his job and some trousers don't stand up to it. He's had to come home for repairs to the crutch... most amusing for me to see him arrive with his undies flashing! LOL!

We are busy doing painting. Both DH and I love the Karen Walker range of paints so we're doing our bathroom/shower/toilet in Froth Green. We're getting a new vanity and mirror cabinet too. Our bedroom is going to have a feature wall of Sanguine Brown (a kind of red) and the rest in Sandspit Brown. The "spare room" has had a revamp in the form of a new corner computer desk and a removal of junk. I spent most of one Saturday morning shredding old bills and papers. We dismantled the old bed that was in there and replaced it with a sofa bed so it takes up less room. Now DS's toys can be in there instead of the living room. Well that is the theory. The reality is they are spread from one end of the house to the other!

Thank goodness for friends

... who like ironing! Ironing is one job I hate. DH went to work today wearing an un-ironed shirt because I forgot to do one last night. So today, I called a friend who had gifted me some "free ironing" vouchers - she picks it up and delivers it ironed the next day. Hallelujah!

So, the house is a shambles, the floors need cleaning and vacuuming but at least DH will have some ironed clothes to wear.

Yesterday I ventured out for the first time by myself with 2 kids. I discovered that the seatbelts in the back seat of my car do not reach around the baby car capsule so she has to ride on the front seat. Fortunately my car is so old it doesn't have an airbag in the front, so it is okay... but I would prefer it if she could be in the back. The reason for my venturing forth ---> I needed some Tombow glue for scrapbooking! LOL!

Here she is at 2 weeks old.

And here she gives her opinion of my photography attempts.

I sure am tired of Blogger and it's issues with photos... even when hosted on Flickr. And even tho' I'm leaving comments on people's blogs who are still on the old Blogger... they aren't showing up. Grrr!

I am also really, really sick of toilet training. We don't seem to be getting anywhere! Bribery and other means are just not working as incentives. DS is nearly 3 1/2 so he surely must be physically capable. At this rate he'll be the only 5 year old still in nappies. *tears hair out*

International Breastfeeding Icon

I'm a big fan of breastfeeding and the promotion thereof.

Wanna vote for an international breastfeeding icon? It seems like theres one for parents room and stuff, but none for showing where there is a breastfeeding friendly place.

So - here ya go. Vote for an icon here.

Thanks to Amy for pointing this one out.