On the one hand I want to be positive, promote all the good bits and talk about all my child's hard earned achievements.
On the other hand, I want to truly get people to understand how complex my beautiful daughter is and the daily challenges and future worries she brings.
And on my other other hand (didn't you know us parents of SEN kids, get given extra pairs of hands to help with all the extra chaos ;o)!), I want to provide optimism for other parents with dual diagnosed kiddies - I worry that I can't always do that, so sometimes opt for empathy instead.
The last worry about ensuring I provide hope but not false hope, is my biggest fear. I sometimes think 'bitter sweet' is a good term for life with Little I.
She brings such joy with her smiles and giggles, she brings glimmers of hope when she spontaneously signs and sometimes tries to say the odd word, but then it is lost..... leaving an underlying sense of sadness for those around her.
Then there are the practical considerations. My child has no safety awareness and a very high pain threshold with sensory seeking tendencies that can lead to dangerous situations. I joke about quick reflexes and constant 'fight' mode, but in all honesty - it's sometimes just plain exhausting.
Take comfort. I take comfort in the fact that Little I, for the most part, is a happy, smiley and despite of her autism 'engaged'. That said, her engagement is still vastly different to a child without autism - but you find joy in these small mercies.
Of course, every disability is different and for some children a life with work opportunities and independent living is totally achievable. Public perception needs to be continually challenged, to ensure these kiddies have the best opportunities.
Then there are kiddies like mine, independent living will never be an option, but keeping her safe, happy, engaged and thriving in her own way, is just as important as it is for any other person.
So, how do we retain our hope, energy, drive and optimism against the sadness, exhaustion and worries for the future?
........... answers on a postcard..........
Just keep believing and being a brilliant Mum, no one knows what these special kids are capable of.X
ReplyDeleteThanks Amanda! Sometimes we all need a pep talk! ;o)
ReplyDeleteHello Claire, this is my first post so I should introduce myself. I am Clare too, and I also have an autistic daughter who is 8; she has a 16 year old brother and near 20 year old sister. So much of what you say resonates with me. I have days of joy and anxiety all mixed up together! We celebrate he small triumphs and worry about the future - will she learn to read and write? Will she ever have real friendships? Will she be safe? What if something happens to us - what then?
ReplyDeleteI work as an organisational change consultant so change and transition is my work world but it is also my personal one every day. I am also writing a dissertation on the subject of hope (yes really) so am immersed in the language of hope, optimism, fear and despair - but it is helping more than I can say.
Thank you for your brave and wholehearted blog. I am glad to be here and hope I can contribute.
With thanks
Clare
Hi Clare. Thank you for saying hi. It's always lovely to 'meet' another kindred spirit. I wish all the best for your family and your work - you've taken a lot on. Sounds a bit like me to be honest, but in some weird way, I think spinning lots of plates keeps been sane and grounded..... I hope! (there's that word again!). I look forward to staying in touch. x
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