We will ignore the elephant in the room – same elephant, same room – and focus on the good things instead. So here are my reasons to be cheerful for this week (actually last week, as I’m ridiculously late posting on this blog).
Especially at Christmas time.
And it was silent and grey as I headed out to the Farmleigh Christmas Market with Smiley, but also calm and mild. Just right for a relaxing stroll and maybe some last minute shopping.
You see I’m still looking for the perfect present for Smiley. After all what do you buy for a young adult with very special needs who already has everything that she needs? And she can’t tell me what she wants either. I had this half formed idea about her waking up on Christmas Day to find her room transformed into a sparkly grotto as a special surprise, but soon realised that I would not be able to do that without wakening her. So I’ve been doing a little each day. Inspired I am not.
I forgot to post this earlier, if you would like to find out what happened see here
A similarly dreadful story of undercover reporters filming the abuse of adults with intellectual disabilities in a care home. I did not see the programme, I could not bear to watch it, because after I die, my daughter may be put in a place like that. It’s the nightmare that haunts me every day. So I had to write about this issue, before everyone moves on to the next big scandal.
In the meantime there’s been lots of hand wringing and promises of enquiries and improvements in training and wages. But my experience as the mother of a severely disabled young adult is that the issue goes much deeper.
My little miracle baby is all grown up, she’s made it, she’s beaten the odds and become a gorgeous healthy special young woman. I can’t help but remember how it all began, with that fateful trip through the dim corridors of the hospital, when I was told I had a 70% chance of delivering a live baby. And all those people who told us to baptise her in the hospital, “just in case”. I always believed in her, I never doubted that she would survive and thrive, and so she has.
Before Smiley I would’ve run a mile at the idea if being a mum to a child with severe disabilities, but now I cannot imagine life without her. Ever.
More here including lots and lots of new pictures
6.30 Quick coffee, then up, washed and dressed to clear up the worst of the mess before..
7.30 Home help arrives to help me get Smiley up. Run around cleaning while Smiley has breakfast.
8.30 Eat own breakfast and chat to my daughter. Look at Tweetdeck together. It moves, so it must be fun. Sort out other children. Read Respite social story.
9.15 Bring daughter to meeting with son’s autism service providers.
Read more here