We try really hard not to let our altered life hold us back from enjoying what is also a very rich and beautiful life. But, I cant deny that we often face some challenges along the way.
In my ‘adventures of an altered life’ series I aim to share with you the ordinary fun of an extraordinary journey. This will include accounts of our days out, holidays away and general life in the fast lane.
I’ll also be sharing the difficulty in making huge decisions for Harry and his future face and life as well as the results of those decisions – often hilarious and heart warming, always nerve wrecking and full of never ending hope.
Great to have you with us to share these adventures. Buckle up, it can be a bumpy ride!
When your child’s birthday is a tough day
Ive spoken before about how I didn't really cope very well with the news that one of my premature twin boys had been born with one half of his face developed (nothing to do with his prematurity). I was stunned beyond words and to say that that day changed me forever...
5 ways of explaining autism to kids
I am quite used to explaining why Harry's face looks different to most nowadays and if facial disfigurement is something you would struggle to explain to your child then please check out my bog post on 7 ways to help your child understand facial disfigurement as the...
17 aspects of life at the side of a hospital bed!
Harry recently had planned surgery on his eye socket and as ever, I found myself with time on my hands as I waited for him to return to the ward. I sat in the café and then at the side of the hospital bed and I got thinking about all the times I had been here. Waiting...
The friends you value when your child has additional needs
I never wanted to be the mum of a child with additional needs (see also – special needs, disabilities). It was never in the plan. When Harry received his second label in life of Autism (after his diagnosis of a cranio facial condition called Goldenhar syndrome) I...
9 tips for any professional working with a unique child.
I was recently asked to give a talk at a local college to students embarking on a career as health care professionals about my experiences both positive and negative and the impact that had on me as a parent. I have to say that I really enjoyed preparing for the talk...
A financial plan for my disabled son part 1
After I spoke on radio 5 live recently about the minefield surrounding making arrangements for my disabled son after I die, I had a chat with a legal advisor Philip Warford from Renaissance Legal who was part of the team of experts who spoke on the show. Phil...
7 fears when parenting a child with autism.
I was recently asked to share my experiences of parenting a child with autism for an international website called Healthline which is the second largest health and wellness site on the internet! No pressure then *gulp* I discussed some ideas with them and one aspect...
Dear autism, we need to talk
Dear autism, We need to talk. You knew me before I knew you. I know that you make your presence known suddenly for some families but you crept up on us gradually as I was adjusting to other news about Harrys health and I am grateful for that. There was no sense that...
Looking back and moving forwards in an altered life
Looking back in life isn’t always the best thing to do but often I find myself remembering a time when life was so very different and comparing it to life now. My friends’ babies came home with balloons and stuffed teddies. Harry came home with a list of professionals...
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