Welcome to Holland

If you have a child with special needs, sooner or later someone will send you this story:

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 guide books 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 a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. 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....and 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."

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


Like many other parents of children with special needs I think it's a nice story when told by someone else who has also ended up in Holland but incredibly insensitive when written on a postcard from Italy.  There are a few songs, stories and poems like this around, some of which I like and some of which I don't.

I really don't like the ones that paint an unrealistic picture of children with special needs.  Children who have physical disabilities are mostly like any other child except they have certain limitations.  Isaac isn't a saint like being who smiles at old ladies and generally looks ill.  He is determined and fiesty.  He says "mummy, can I have ....?" at various things while going round the shops.  In many ways he is like any other 4 year old.

Of course in many other ways he is different from other 4 year olds and we have really been feeling it since he started school.  He is doing 3 mornings at school this week and already he is struggling and it's only Tuesday.  He's not settling very well either but that could be partly to do with his part time hours.

Another week gone

3 weeks of the autumn term gone, another 5 to go until 1/2 term.  Isaac has been doing 9-1 this tuesday and thursday and will do the same next week.  Then on thursday the senco, the teacher and I will discuss what to do next.  Next week the 2 halves of the class will come together to do 9-1 then the week after those who are ready will go full time.

When I pick up Isaac at 1:00 I have the opportunity to be a fly on the wall at playtime.  Jeremiah seems to spend a lot of time running round in circles and Isaac seems to spend a lot of time sat on the playground wall being hugged by at least one of the older girls.

Nothing else to report apart from that Malachi has a cold which has upset his reflux.  So I'm spending most mornings washing bedding and scrubbing the cot.

Children's television when I was young

Jeremiah wanted to know what I watched on television when I was young.  After a bit of searching on youtube we discovered some videos of old children's television programmes.  Jeremiah and Isaac loved fun house and banana man.  I was trying to explain to Jeremiah that when I watched fun house we didn't have soft play but he gave me that look that makes me feel like a dinosoar.

Malachi has got a cold and he is really wheezy again.  He isn't as bad as last time, probably because I started him on his inhaler as soon as the wheezing started rather than dithering and then waiting for a GP appointment.  I think he will probably get an asthma diagnosis at some point.  Partly because Ehlers Danlos Syndrome affects his core muscles and partly because Simon and I both have it.

Isaac will be going to school 9-1 this week and next week.  Hopefully he will manage the extra hour ok.  He has been very tired but he is determined to walk as much as possible.  We take the wheelchair with us everywhere just in case and on most journeys he will get in for a rest at some point.

20 months

Today Malachi is 20 months old.  He weighs 9.5kg, wears 9-12 month clothes and we are still breastfeeding.  He isn't walking yet but he loves to climb and pull my hair whenever he is in the ergo.

This week has been busy.  Yesterday Isaac went into school without crying for the first time.  Malachi and I went to the toddler group at the sports centre where we ended up seeing Simon's cousin's wife and her little girls which was a nice surprise.  I got to have squishy newborn cuddles and then she needed feeding so I ended up playing with Evie and Malachi on the bouncy castle.  Somehow in the last 20 years I have lost the ability to stay upright on those things!

Then it was a quick dash across town to pick up Isaac from school, home, lunch, pick Jeremiah up, cook tea and put the children to bed.  Today is my housework day so I've been trying to fight the tiredness and get some jobs done.  Isaac is also fighting tiredness and is now in a "high as a kite" mood.  School again tomorrow.

The weekend

This week I feel like I've spent most of my time at the bus stop.  In between bus journeys we have been very busy.  The 6-9 month clothes have gone up in the loft and the 9-12 month clothes have come down.  We cheered on St Andrews house at sports day.  Isaac was pushed to his limits at school.  Isaac's steps were installed by the doors to the reception class.  Cars 2 was watched several times by 3 very tired boys.  We went to the after school thing at the church where someone praised my boys behaviour (proud mummy moment).  Jeremiah took part in the year 2 sprint and the infant school bat and beanbag races (another proud mummy moment).  Malachi clapped when Jeremiah finished his race.

And now it's the weekend and I have mostly been doing housework and recharging my batteries ready for another busy week.  I have been struggling with carrying Malachi while pushing Isaac in his wheelchair.  The ergo is a lot better than anything else I've tried but however I do it a 19 month old is heavy.  I've managed to get him on my back once and that was better but I haven't been able to do that since.  Malachi likes to fling himself backwards at the crucial moment which makes me nervous.  I have discovered a babywearing group fairly near us so I will try and get to the next meeting.

Isaac on his first day at school

Orthotics, a party, EDS awareness and going back to school

It's been a very busy 2 days for us.  Yesterday Isaac had his orthotics appointment.  We were late because the bus driver refused to let us on because there was a buggy in the wheelchair space.  Don't get me started on that.  The orthopaedic surgeon has decided that piedro boots aren't giving him enough support so he needs inserts in his piedro boots.  When he does pe at school the teaching assistant will take the inserts out of his piedro boots and put them in his plimsoles.

On our way out Jeremiah noticed a sign about a party and free cake.  It was the hospital's 70th birthday and there were lots of 1940's themed stuff going on.  A journalist came and interviewed Isaac and Jeremiah and took photos. http://www.tauntonpeople.co.uk/Musgrove-Park-Hospital-throws-40s-themed-birthday/story-16813667-detail/story.html - this is the story.  http://www.tauntonpeople.co.uk/pictures/Musgrove-Park-Hospital-Taunton-70th-birthday-bash/pictures-16813628-detail/pictures.html - these are the pictures.

Maddy's campaign has spread further.  She won the Pride of Australia award and appeared on television as well.  http://au.news.yahoo.com/today-tonight/health/article/-/14753623/maddisons-disease.  She asks that everyone google Ehlers Danlos syndrome and read about it for 5 minutes.

Today both the big boys went to school.  Malachi and I were nearly late, thanks to the bus, but we got there on time.  Jeremiah went in without a backward glance and Isaac had to be prized off my leg.  He had a good day though, he is absolutely shattered now.  Pictures tomorrow hopefully.

The end of the holidays

Just one more day and the older 2 will be going to school.  We've done some tie dying this week which mostly turned out well.  We watched some of the paralympics and Isaac was curious about why the althletes didn't take their wheelchairs in the pool.  Malachi is ready for the 9-12 month clothes to come down from the loft.  Isaac has been wheeling himself around in his wheelchair and yesterday he went round the flower show wheeling himself most of the time.

Tomorrow we will be going to the hospital to pick up Isaac's piedro boots and hopefully something to support his feet in PE.  The name labels have arrived and I just need to iron them into their uniforms.  We are ready for school to begin although I know I would rather have more holiday.

However the school is not ready for Isaac.  The grab rails haven't been put in, the steps haven't arrived, the toilet seat isn't here and nor is the step for the toilet seat.  His chair assessment hasn't been done and they haven't applied for extra funding yet.  The adaptations will be sorted by the end of the week, I have been told and in the meantime the class TA will be taking Isaac to the toilet, holding his hand when he goes up and down steps and trying to avoid him being squashed.  And I am repeating to myself that he will only be going to school for 6 hours a week and trying not to panic.