Saturday, 25 January 2014

Got any Grapes??

Before I start, I thought I would let you know that I have had lots of feedback about my last post. There are many people who believe dogs can have autism, and many who say their dogs display several autistic traits. I guess there is no reason to believe otherwise. Its a condition to do with the way the brain is wired, why should it only affect humans??

The bedtime routine has so many similarities every day, yet also differs so much. Last night, daughter refused to take her medicine. So bed time was interesting. I said I would sleep in her room as she is very predictable and I thought it would make life easier as it clearly was not going to be easy. So I settled down to 'sleep' however, daughter had different plans. She lay on her bed and refused to sleep. Here is a you tube clip that you just have to see to understand my daughter. Its typical behaviour of a child with PDA. Watch it right to the end. (If you can manage it)

Did you watch it all? Did you like it and find it funny or frustrating? Now imagine your child is the duck. Every day. Constantly asking questions, often repeating them over and over. Finding ways round your answer and asking again. Its not so funny when you live with that duck every day. As if that's not enough, if you don't offer the 'duck' what it wants, it can become extremely violent and aggressive, both physically and verbally. Its hard work.

The duck needs to be in control, when its out of control, anxiety levels rise at amazing speeds.

My point is bed time last night was like this....
Me...Here is a drink
D...I am not having that, it has medicine in it
Me...No it doesn't, don't drink it if you don't want it. (total lie :-)) Do you want your medicine?
Daughter didn't drink it.
Bed time, Daughter lies in bed
D...I am bored, I cant sleep, mummy, mummy (poking me)
Me...I am in your room, so you need to settle, go to sleep, night night.
D...Mummy, mummy, mummy, I am bored, I cant sleep...(Hitting me with pillows)
Me...shall I get your medicine
D...No, I don't like it. I am bored, I cant sleep (pulling my pillow away)
Repeatedly for an hour.
D...I want my medicine!
Me... How do you want it?
D...I don't care.
I give daughter medicine that she refused before. She drank. She fell asleep within 15 minute.

Do you get the Duck? The duck wont take medicine because I want her to. She will take medicine because SHE wants to. On HER terms and when SHE is ready.

And in answer to one of my previous questions, my daughter is now going to be known as Duck. After watching that clip, I guess you will understand why.

And, Duck has already told me she isn't going to church this week.  We have already reduced our attendance from almost every week to every other. We are not going to stop going because Duck doesn't want to go. Husband and I have agreed every other week, so this week, we are going.

Duck got up in the morning looking 'dangerous'! However, out of the blue she told me she had packed her PE kit for school on Tuesday. I had dropped hints for the last few days that we need to get the bags ready this weekend so it didn't cause a last minute panic over finding everything. I hadn't realised the hints were sinking in, and she actually acted on it without it causing a meltdown. Impressed or what? Then Duck got herself dressed and said she was ready for church. Wow...amazing. No tantrums, nothing, just came to church. She joined in a little with the service too bus mostly sat there with an awfully grumpy look on her face saying she was hungry. I had given her the prescription milkshake for breakfast but she really needs more food. We got home and she managed some chocolate milk, a yoghurt and some very smooth chicken soup. All liquid, she wont even eat the jelly we had for her, and she is refusing chocolate, which she normally eats because she says its getting stuck in her throat.

I went out with the dogs and nipped to the shops, whilst I was gone, husband put a film on for the kids so I got home to a nice calm Duck and son. I came home laden with strawberry milkshake, ice cream and yoghurt. All full fat and with as many calories in as possible. Duck needs 1200 calories a day just to maintain her weight, ideally though, a minimum of 1500 is needed for her to grow. That's hard when she only drinks liquid. I have mastered 1000 is quite easily, so everything extra is a bonus. I write almost everything down that she eats, so by lunch time I know if I need to keep offering her drinks or yoghurts to boost her up. Duck knows what she needs too. But given the anxiety around her, she is unable to process the maths, that's most definitely a mummy job.

Duck had a job for the afternoon. Friend gave me a DIY chocolate chip bread pack she thought Duck might like. Duck loves cooking, so we set about that, in the hope that she may be tempted to try is once it was ready. Duck showed her wicked sense of humour during the bread making. Instructions said 'leave to rise in a warm place for half and hour' so I asked her where a warm place would be. She gave me a cheeky grin and said 'Under daddys bum because he farts so much'! Needless to say we chose a different spot. :-)

Once the bread was risen and in the oven, Duck decided her Ted whom she takes to school needs a uniform. So, old jumper hacked into a new, small jumper for Ted, which Duck made a mess off. Luckily for Duck, mummy was on hand to start again and make a jumper that actually fitted. I have to confess, I did not inherit my mothers sewing talent, in fact, I totally despise sewing. Still, between Duck and I, we managed a reasonable job.

I think I have said enough today, I have put a picture of Ted in his new uniform on my profile for you to be impressed with. One last thing....Have you got any grapes??? :-)

Fighting for PDA to be recognised within the NHS. Please support the hundreds of people who need the diagnosis to get support. PDA is a type of autism.
Please sign and share the petition.

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