Friday, 30 December 2011

2012: Are good times here to stay?

Chrissy & family at Christmas

Despite my fears, I couldn't have wished for a better Christmas with Chrissy. For the first time in years, she sat down calmly to eat Christmas dinner with us and joined in with family celebrations on the 28th. There were 16 of us at one point but Chrissy wasn't fazed by all the noise and chaos. She played sweetly with her seven-year old cousin, who led Chrissy by the hand to search for her Snowman book. She laughed with us and amused us all with her colourful observations. Sometimes Chrissy randomly shouts out what she sees or just gives colours: 'brown clock,' 'grey mirror,' 'red Father Christmas,' 'yellow! green!' She sat quietly smiling to herself as we played an uproarious game of Trival Pursuit; she played peek-a-boo with her cousin through the hatch between our dining room and kitchen. She was interested in and delighted by everything that was going on around her, and had us all at her beck and call!

Unpredictable as ever, Chrissy had one major outburst on Boxing Day - paradoxcically, the only quiet day where she wouldn't be overwhelmed by sensory stimuli. It put paid to my plan to take her for a short stroll. She also had an irritable spell on Christmas Eve, so I slung her weighted blanket over her. She squealed and flapped with delight. It worked a treat! The next night when she showed the same behaviour, I tried the weighted blanket trick again but she screamed: 'Take it away!'

So Chrissy is still very demanding, volatile and unpredictable but the good times are as wonderful as they ever were. I think swapping Topiramate with Pregabalin (or simply withdrawing Topiramate) has resulted in these changes but it's too early to tell for sure.

Ian and I have been blaming the problems of the past three to four years on Chrissy's meds not suiting her. It's been a MASSIVE battle to get healthcare professionals to listen and take action instead of blaming 'unsuitable' environments she's been living in. Now, two years after our legal fight to get Chrissy into an assessment and treatment hospital, we are starting to see light...

My sister, Sarah, summed it up with her message on Facebook: 'It was great to see Chrissy in such good form. I can't remember the last time she was so engaging. It just shows that Chrissy of old is still in there - let's hope she's here to stay.'

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  1. So glad Chrissy had a good Christmas! Wishing u all a happy new year. xxx

  2. That is great Chrissy had a good Christmas makes the world of difference .

    Happy 2012 and hope its a wonderful year for you both xx

  3. Hope you see far more of the Chrissy of old in 2012 x

  4. Happy 2012 ladies!
    Thanks for your lovely comments xx

  5. Wonderful news. I am delighted it went well (despite one or two outbursts), it sounds like a wonderful Christmas was had by all, chrissy included. As I mentioned after your last post, I think it is wonderful you continue to have big family Christmases. You must have a loving and supportive family. I hope that as time goes on, our friends and family will also be as supportive and accepting as yours seem to be. I hope for you all that the good times are indeed here to stay. Happy 2012 Jane. X x

  6. Thank you LittleMamma, it's sad that some of us mums with special needs kids have to fight for support & understanding. It's especially difficult if your child has behaviour problems or an invisible disability that can be blamed on bad parenting. I do hope all your friends & family rally round in time. I feel like we're all in it together now & it's a huge weight off my shoulders xx