Waiting for my ticket to be verified….

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

‘Welcome to Holland’

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…

WTF?!?!?

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.

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10 thoughts on “Waiting for my ticket to be verified….

  1. That’s made me feel so sad for you, but it is how it is, for lots of us. Dinky is a beautiful , bright , funny little girl…..wishing things get better soon.
    Wish I could do more. X

    • Thanks Maria,

      I didn’t mean for people to feel sad for us, I love Dinky beyond words, I know she is awesome!

      I just thought I would give a more realistic, PDA version of ‘welcome to holland’.

  2. Yes! I too am in the no-man’s land of border control and our ticket is verified already but we can’t quite find anyone in Holland willing to accept us into their fold no questions. Instead the Italians keep following us and telling us we should be back in Italy despite our ticket very clearly being verified. We too are not outwardly the most Dutch of Dutch people but we certainly are more Dutch than Italian when you really look closely. That said, I personally am enjoying travelling around aeurope taking in the sights and picking and choosing whatever bits I like from all the counties and creating my very own country in my head where we belong along with many others!

    Incidentally, your description of Dinky at school and how you can’t fully relax usually while she’s there and her behaviour when she returns home with the asking you for things for no real purpose is exactly the same as our daughter. Spookily so and filled me with relief that its not my pandering to her, it’s perhaps a coping mechanism they initiate.

    • Thanks for replying Lucy,

      I think you might be onto something with starting a new country. I was starting to think I could stay in Belgium! As I don’t expect anything will change much even if my ticket does get verified. I think both the Italians and the Dutch will say I don’t belong…

      I think it is a coping mechanism. Sometimes she will ask for things she knows we do not have or that she knows she shouldn’t have before dinner, just to start an argument to release the frustration.

  3. another brilliant post DM. The sad truth is, that for now, none of us belong in either Italy or Holland. We feel that we should be accepted in Holland and I do think that the Dutch population are coming around to us and a few do welcome us with open arms but there is still much confusion and lack of acceptance. We don’t really fit anywhere, perhaps one day Holland will be our home but for now I feel that we need our own country. Close to and twinned with Holland but independent also until such time that we can be embraced by the whole population. I have just read your previous post also, the packing of item after item before you can leave the house is another stage that Mollie and I went through. It reached such ridiculous levels that eventually I would have needed a lorry just to carry her comfort blanket of junk to venues. The continuing issues with bed getting later and later, demands of this and that to delay the inevitable, wanting to sleep with you, shouting you to carry out tasks that she could easily have done herself are all part and parcel of the gradual progression of pda that Mollie exhibited. Even now she will shout me upstairs to switch on the light that is next to her bed, get downstairs then she wants a lolly, get downstairs then she wants a drink and so on and so on. Exhausting isn’t the word, however the period that you are currently going through and may continue to do so for quite a while was the period that I found the hardest. The good news is that it does start to improve as they get older. The problems are different but not quite so exhausting physically.

    • Thanks for your reply Jane.

      At the moment I could quite easily tell the Dutch and the Italians to bog off… The Italians more so than the Dutch.

      I’m starting to wonder if Mollie and dinky being very similar in lots of ways at this age is a comfort (in that I’m right about PDA, which gives me the power to take on the school and the head). Or whether it just scares the bejesus out of me!

      I think I need to ask for intravenous red bull at the moment!

      Thanks for your support xx

  4. Great post again. i too fully recognise the need to be with all the time. Grace doesn’t let me out of her sight very much and if she does its moments before she’s shouting at the top of the voice for something, for me to look at something etc etc. When I am with her she generally just wants to talk at me or she just wants me to “just be there”. At which point I am not allowed to do anything like read, etc as that would only frustrate her and give her something to argue over!

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