When Dinky was first identified as having special needs and I was bombarded with ‘dinky is autistic, can’t you tell?’, I was shown a poem called
Which is great, except it doesn’t really match the experiences I have had with entering the special needs world.
The person who wrote it knew, when her child was born, that hey had special needs as her child was born with Down’s syndrome. Maybe ‘welcome to holland’ seems to fit with those who knew when their child was born what was going on.
For myself, it has been completely different. Carrying on the Rome/Holland thing….
It is like I was given a one way ticket to Rome. I come round to the idea, I quite like the idea, I buy the books, learn some local lingo and prepare for Italy’s finest attractions. Time for the flight, goes ok. Land in Rome. It is everything I thought it could be and more. I hear people complain about the small things, and think how lucky I am that actually since landing it has gone off without a hitch.
It is coming up to the time where I can claim citizenship. Yep, I’m becoming Italian.
Then some people whisper behind my back that I look like I should be in Holland. I laugh it off, Holland, how ridiculous. Why on earth would I go to Holland? I’m enjoying Rome. The Italians start getting annoyed as they say more and more that I don’t belong.
Then I start to think and maybe, some things sound like I should be in Holland, but my ticket says Rome so I should be here right?
I search for my ticket.
My ticket says Rome. It’s ok, it says Rome!
Then out of no where I’m thrown into a car, taken to the airport and shoved on a plane to Holland. I ask why I’m going to Holland. Everyone says we should be in Rome so why am I going to Holland? Is it on the word of a few people? So I am on the plane and I’m given loads of info about Holland. I realise maybe I should be in Holland. I am already learning the language before I land so I can fight my case, but I’m starting to lose the ability to speak Italian. It is like I part belong in both countries. Can I settle in Switzerland? Maybe closer to Holland… Ok, Belgium.
The flight attendants say my ticket says Rome, but the small print says you were due to move to Holland after a predetermined period of time…
The rest of the journey is confusion. You don’t know who to talk to, and feel isolated on a plane above the alps. The anger and the uncertainty is terrible. You moved to Italy, and everything changed, now it is all changing again, so fast and without much warning. You start to reply everything make sure you have it set in your mind where you should be. You notice that you knew something wasn’t right. You become angry with yourself. Then out of nowhere comes this wave of hurt. You are not sure where you belong and Holland is new and Rome is unfamiliar now, you start to wonder how you believed it for so long.
So I land in Holland on a temporary ticket as mine has to be verified. I meet some Dutch people, I’m getting to grips with the lingo, and although I haven’t been in Holland long, I see that maybe we are not the most obviously Dutch people, but we are supposed to be here. So I’m waiting, I’m waiting for my ticket to be verified.
It is going to be tough as I spent a long time in Rome. But the longer I am here the more obvious it is we didn’t belong in Rome. The only problem is we don’t look traditionally Dutch, and even the Dutch sometimes treat us as outcasts the same way the Italians did… Maybe there is some merit in Belgium after all, or maybe a visit until my ticket is verified?
That’s the airy way of telling some people about the change in lifestyle…
The truth is vastly different. Yes, Dinky has many good qualities and life is not always bad, there are laughs along with the stresses.
Today I am truly exhausted. I actually fell asleep while dinky was playing upstairs. My house is a mess and someone actually came over. I felt horrified, but yet I was just too tired. Over the last month both of us have had barely any sleep, when she wakes up it is a battle to get her breakfasted and dressed. It can take 3 hours! I can’t relax when she is at school because the school are a joke, and she comes home anxious and on edge. When she comes home she doesn’t play in her room or relax, no. She spins, and then she wants the tv on. And during any type of break or out of boredom she asks for things, things she doesn’t want but wants me to get her. Getting ready for bed can take up to 2 hours and even then lately I can’t relax because she comes down and asks for drinks, or to go to the toilet or for a snack. She can’t switch off. She comes down to tell me something that doesn’t make sense. Then she wants to sleep in my bed. It is 11pm and she has school the next day, but she won’t sleep unless she is with me as she now is tired but anxious about school.
When it is not school or school the next day I have to do something with her out, as she becomes an unwilling shadow, unable to be on her own, but not wanting to interact with me at home.
Out I’m on edge, I am trying to gauge how she is doing, I have to walk on eggshells and expect the unexpected…
I could go on…
I just don’t see how that gets put into the original. I guess I am tired and it has not been great for us lately, but it is neither all good, or all bad. There is no point dressing it up to make anyone else feel more comfortable, and there is no point dwelling on the bad times.
The equivalent in real terms would be that, yes Holland has windmills, tulips and rembrandts.
But usually you are too tired to see them, especially for all the fighting for support and understanding, but you know they are there.
It’s harder than bringing up a child without special needs, but the love for your child doesn’t change.