Holland or Mars? (Being “special”)

DSC_0202I read “Welcome to Holland” some time ago now, when the Doctor told me that Jamie had ASD (2007) he gave me lots of paperwork and information and this was one of the sheets among them – and the one that made the most sense. It was written in 1987 by Emily Perl Kingsley, about having a child with a disability. In “Welcome To Holland” Emily uses the metaphor of excitement for a holiday to Italy that turns to huge disappointment as the plane lands in Holland and they have to take their holiday there instead.

“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.”

The metaphor is that the trip to Italy is a typical birth and child-raising experience, and that the trip to Holland is the experiencing of having and raising a child with special-needs.

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.”

You can read the whole thing here: http://www.our-kids.org/Archives/Holland.html

Don’t We All?

It is strange really – I don’t think anyone really ends up where they thought they were going. When you find out you’re pregnant people talk about what it will be like, how will you cope etc with a baby. When I realised I’d be doing it all on my own my sister was shocked that I could even contemplate it “the first 4 months are the hardest – how will you get it’s feeds ready??” – that was obviously a job her husband did. “Who will buy you Mothers Day cards?” was another.

I thought about how I could cope, how I could get his feeds done, etc. I had a plan. Once he went to school, I’d go back to work etc etc… you have an image of what it will be like and of course mostly – and I imagine for every family out there – the reality of having children is different once they arrive and turn your world upside down.

So now I’m in Holland. Things are very different here. My Baby is now 10 years old. I don’t think he is in Holland though. I think he is possibly in Mars. His world is very different to ours. So not only am I in Holland without a guide, I’m also working with someone who speaks a different language and sees things very differently.

Visiting Secondary Schools

When we are in our own little bubble it is easy to forget that we’re in different worlds. I’m okay with Holland. I’ve gotten used to it here and I love my son so much so of course I’m okay with it. You even tell yourself you wouldn’t have it any other way…

We went to visit a Mainstream secondary school Monday. Because Jamie has a Statement of Special Educational Needs (and his is Complex Needs so he gets a lot of one to one time with Learning Support Assistants – LSAs), this means that we have to start thinking about Secondary School Placements now. I have to decide if I want to try to get him a place in a Special School or whether Mainstream provision will be able to provide for his “complex needs”. I’ve been to our local special school 4 times over the years. Each time it had improved, each time I wanted him to go there but was told no – there just wasn’t room. Compromises were made; getting hours of 1:1 back in place, incorporating brain breaks, comfort breaks  (although I don’t think these have actually happened). Jamie HATES going to school. By thursday he is exhausted and he was getting so anxious about school that it was preventing him from sleeping so I’ve just had to start giving him medication with Melatonin (although it’s not natural because the doctor has to give us the  pharmaceutical industry version – ripe with “possible” side effects. Ironically one of them was insomnia and irritability – like we need any more of that! but I digress…).

We went to the mainstream secondary school – and on leaving I burst into tears.  I do the same when I go to special schools. I guess sometimes it all gets a bit too much because these are the times you realise you are not in Italy, you are in Holland and you think that they will be missing out on everything Italy would’ve given them. They are in Mars so they don’t even care! You do though – and sometimes, just moments like these when you see the pictures of the kids on the walls, you see the PE production photos, the amazing art departments, the enormous Sports Hall, the experience of school and everything that comes with it and you realise that there is no way your child can go there, or can have those experiences. And YES – You want to jump on a plane!

Luckily you can’t. So you start looking at Holland again with fresh eyes. You see all of the experiences that he WILL have; experiences he would never have had in Italy. And everything is okay again with Holland.. We can do this! He IS special, he IS different – and he needs to be somewhere where different is “normal”.

So – 2 mainstream schools down, 1 special needs school to see in March – then it’s our review in March! The fight is back on for special school  – with vengeance!


2 thoughts on “Holland or Mars? (Being “special”)

  1. I’ve read that quote before and it sums things up very well. My 15 yo son is autistic and we found out just before he was 3. It sounds like you are coping with a plan – excellent! For him and for YOU. Look forward to hearing how it all goes 🙂

    • Thank you! I know it’ll still be a fight – It was good to write and get off my chest though. 😀 Jamie was diagnosed when he was 5, although I knew before that.. x How is your son doing?

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