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!

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Art Journalling Playtime

Oh my word! I have just had so much fun getting messy with paint and glue today!
I have messy hands, and glue to peel off! (it’s one of those things you never grow out of, FUN! Yay!)
I worked on a couple of pages today – and recorded the process – (I’ll be editing these over the weekend – I may have to fight for the computer from my son but a fight will be had if need be – I want to COMPLETE the videos I already have waiting to be edited).

Art journalling is so much fun and gives you freedom to just play with paint, get your fingers messy and, for me anyway, is a kind of meditation. I’m starting to get the hang of the pages being less about art and more about the process. Some pages will be more about the writing, and some will be more about creating art whereas sometimes I just want to fill some pages with scribbles and it’s my book – so I can… NER!

I’ve completed two pages today – both quite different from each other.

I’ve seen people talk about their “one word for the year” and decided it was about time I thought about mine. One word to live by this year. Chaos did come to mind immediately but that’s not really something to aspire to. I thought about the things I think about at the end of the year and that lightbulb appeared over my head! COMPLETE is my word for 2013. I want to feel complete, complete projects, complete artwork, complete videos, complete (okay well at least start) work for a book… I came to this conclusion WHILE I was working on this page. The theme choices for our journal swap this month were “If I were 5 again” and also “This year I will”. I did the 5 one for my swap partner and chose the latter for my own journal:
DSC_0084
I also saw a post-it note on the following page that read “Depression”. When I started this journal I wrote different words I wanted to do pages on and just stuck them to pages, although I’ve not really stuck to them. I did want to do something for depression but didn’t want to stay there too long as I don’t want to pull myself there to I did this page which didn’t take me very long. It’s there but I didn’t immerse myself in it so I got in and out as fast as possible (bit like the crystal maze).
Depression

I’m sure I’ll do some more over the weekend – whether I film the process or not I don’t know!

What is your ONE WORD for 2013?

ARSEHOLE DEPRESSION!! (WARNING CONTAINS SWEARING)

You’re an arsehole, and I hate you so,

you make me feel crazy, so f**k off and GO!

You make me ugly, you make me paranoid,

you make me doubt everything, so every thing i avoid.

 You make me so lonely, you make me a mess.

You hate me too, so stop causing me stress!!

 

You are an arsehole, so leave and don’t come back,

but i know that you’ll leave; then return with a whack.

 You’ve made me your slave, you’ve trampled me down.

I’ve no self esteem left, and all I do is frown.

 

BUT WAIT!

I KNOW ME!!!

and I’ve found a cure that’ll set me free,

So I’ll walk away, I won’t look back,

and I’ll be the one dishing out that whack!

I’ll kick you and bury you into the ground,

and you’ll stay there silent, not making a sound.

I can get on, get my life back.

I’ll pick myself up and get back on track.

 I’ll hand myself in,

Oh I’ll give a confession,

Good riddence to you Arsehole,

you’ve been my LAST DEPRESSION!!!