Saturday, 25 January 2014

Welcome to Holland (PDA autism)

PDA children go through phrases, well, at least mine does. She has been so good over the Christmas holidays with so few issues that I was almost having doubts about her actually having any form of autism a lot of the time. Then, the phrase is over and autism hits you like a sledgehammer. PDA more like a swinging ball straight to the stomach, sweeping you off your feet. Duck has been terrible again today. She went into school reasonably well, but kept complaining about feeling ill. I went in and gave her a top up dose of medicine, and got the normal concerned teacher who doesn't know anything much about Duck telling me how worried she was to hear Duck isn't eating. One day I will probably lose my self control and let the sarcasm take over. You know, the old 'Oh really, I never knew children actually needed food.' kind of thing. I had been in school for half an hour first thing that day discussing with the SENCO and telling her Duck had tried a couple of different foods and that I had considered that good. We also talked about the GP and a new prescription of her medicine drinks so as far as I was concerned, the school were upto date.

Duck was demanding this evening, wanting me to do this, me to do that, me to do everything for her. I try to balance. I need to spend time with her on a one to one, but I cant let her be overly controlling. So, I agreed to a board game with her, which I lost really badly at, then we played an experiment from one of her Christmas presents where you set a mini rocket off by mixing bicarbonate of soda and vinegar. Then I needed a shower, and wanted an early night. Needless to say, Duck was not co-operating. She still claims she doesn't feel well and has this amazingly awful cough. I say that sarcastically, the cough is amazingly well put on and only started around the time we were trying to get ready for bed! Duck sat in the kitchen refusing to move when husband said bed time. I was upstairs getting dried and ready for bed. Husband said ok, and walked out, turning all but the kitchen light off and leaving her alone in the kitchen. We sat in our room wondering how long it would take before Duck appeared. Less than 5 minutes it took before she appeared at our door, still with computer in hand. She sat on our bed and refused to go, despite us asking nicely several times. I got out of bed and reached over to turn the laptop off which sent Duck into a minor meltdown. The meltdown escalated because we wouldn't let her sleep in our bed. Eventually I carried her out of our room and shut the door. This was followed by almost an hour of screaming, banging and shouting outside our room, about how scared, she is, how she needs mummy and all sorts. Duck isn't scared. She doesn't need mummy. She needs control. Being shut out of our room was a total loss of control. About half way through, she agreed she would go to her room and I would go and sit with her for a while, however, we got halfway there and she stopped and refused to move any further, so I went straight back to my room and we began again. Half and hour later, Duck agreed, albeit reluctantly, that daddy could take her to her room. He went with her, and again half way there she kicked off refusing and shouting. Husband is bigger and stronger so he just picked her up and put her in her room. All I could hear by then is screams of get off me, you are hurting me. He wasn't, she was just trying to control him too.  Once she had calmed in her room, some 20 minutes later, she asked if mummy could come and tuck her in, which obviously I did. We had said so many times she needed to calm down and be quiet before I would go, but she refuses to listen and let us control the situation. When she loses control things get worse and she ends up in a meltdown. The best thing about tonights meltdown, is I shut the door, so all the punching and kicking was even more ineffective than normal.   As usual, I am sitting in her room writing my blog whilst she goes to sleep. Apparently, I am also on look out duty for that giant that is part of the amazing imagination of a PDA child.

I guess we could call last night a 'Good night'! Despite all the kicking and screaming, Duck was still asleep by 9.30 and I managed a decent night sleep. On getting up this morning, all I could think of was the film 'Ground Hog Day'. Life with Duck is feeling very much that was. Every morning, treading on egg shells, hoping she gets ready for school without an argument, hoping she doesn't wind her brother up any more than normal for 2 little people, hoping that she gets in the car nicely for me. Normally, she does, its only very occasionally I have to hunt her down and rummage through wardrobes to find her. Then hoping she will go in well at the other end, never knowing quite which way the drop off will go.  Then when I pick her up, its egg shells again, hoping no body has upset her and she had a good day. She is usually good whilst I am working, but the minute I finish is when she becomes difficult. We spend the evening with her complaining about everything that's not gone right then refusal to co operate with anything I try finally followed by bed time refusal. Most definitely predictable, and most definitely Ground Hog Day re-visited!

Duck asked if she could take the science kit we played with last night to school as they had science. I said it was a great idea. Mainly because I thought it would help her go in nicely, but also because the words 'No that's not a good idea' bring so much stress that I often decide the teacher can make that choice!  I let her take it in, and the teacher will either use it or say no. I think I had better warn them its in her bag because I don't want her exploding a rocket in the middle of the playground.

Duck got up this morning and wrote me a note saying she had lost her voice and couldn't talk. I said yes, I wasn't surprised. I couldn't find much sympathy, its kind of self inflicted. It was also untrue. She managed really well for an hour or so, then suddenly something went wrong. Out of nowhere came 'MUMMYYYYYYYYYYYYYYY'..and the voice had returned. Nothing short of miraculous....

I found this yesterday, its called Welcome to Holland.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 - t...o 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.
 
I think its taken me most of the last 9 years to realise that I am not in Italy, I suspected it for a while, but recently I have realised, that I, like many others are definitely in Holland.
 
The only difference to my kind of Holland is that I am having to fight to get the Health Services to agree I am in Holland. I am fighting like hundreds of others fighting for PDA to get recognised.
 
Please help us by signing the petition. The link can be found HERE

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