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!
Autism and Sleep
My son Harry has two diagnoses. His primary diagnosis is of Goldenhar Syndrome, a rare congenital craniofacial condition which affected the formation of his facial features. The second diagnosis is of Autism including Global Learning Delay. It is Harry's autism that...
A financial plan for my disabled son (part 3) The Trust Fund
Back in 2017, I wrote a blog post called '3 reasons why I can't die' talking about the emotional impact of leaving a child behind who will always be vulnerable and need care. From that blog, I was invited onto Radio 5 live to discuss the topic which I blogged about in...
5 ways of preparing for life long parenting of special children.
In December 2018, my son Oliver was invited to help turn the Christmas lights on in our town. It was fantastic that he was asked and so, for the first time, we all ventured into the hustle and bustle, frenzy of lights, music, stalls and streams of people on the town...
Planning for the future; Wills and trusts for disabled children (part 2)
Back in April 2018, I wrote about an eye-opening conversation I had with a legal professional about the steps I need to take to protect my disabled son after I die. When you are a parent of a child with disabilities or significant additional needs, thoughts about what...
The best, hard decisions
Parenting is full of hard decisions at the best of times but when you are making decisions for a child with special needs, life can be even more challenging. In my past role as a primary school teacher and now as I visit primary schools as part of my charity More Than...
Why is hate crime towards disabled children on the rise?
Figures to be released this month following a survey by the BBC show an alarming increase in hate crimes directed towards disabled children. In Staffordshire and Cheshire alone (I live on the border of both counties) hate crimes have increased by over 300%. Initially,...
To the person who feels its ok to stare. Truth bomb time.
From the start of this I am going to say that being a little taken a back when you see something that you’re not expecting is normal. It is in fact, physiologically impossible to avoid as the neurons in your brain are disrupted slightly when they receive information...
3 reasons why medical professionals need to talk to my non verbal child
Years ago, whilst medical practitioners were well trained in the art of diagnosing and treating conditions they were less concerned with the emotional welfare of the patient. They were merely a vessel for the doctors to work with. Nowadays, thankfully, it is widely...
7 ways of supporting parents with SEND children in the school holidays.
School holidays for parents can be a challenge at the best of times. Finding the places, time, money and energy to entertain the children is always a test of the patience and bank balance but when your child has additional needs, this is even harder. Although Harry...
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