Saturday, 26 February 2011
Imagine how sad I was to hear that Andy is suffering from a condition called MND. Such a talented and nice guy, its just not fair. His sister Janet has a blog and is raising money and awareness of the condition. You can see the red band I am wearing in support of Andy and his sister and all money goes to MND charity.
Fibromyalgia is another condition I have come across recently with two friends being diagnosed. These friends are the loveliest, kindest people you could ever meet and yet their lives are plagued with constant pain.
Of course a condition which is very close to my heart is Autism...... Speech, Language and Communication Difficulties. Both my sons are on the spectrum but my youngest is more profounding affected. He is what they call a high functioning autistic so to the outside world he looks just like any neuro typical child but his perception of the world is totally different to ours.
I actually did a digital story once with Yale and BBC, a 2 min presentation which highlighted Harrys difficulties. At the official showing, there wasn't a dry eye in the audience.
Harry struggles with life.... everything is affected. He can't cope very well with change, sleeping is a huge problem, also co-ordination difficulties, reading and writing. He is also sensitive to touch and light.
Its hard to explain really how it affects him but my chemo brain has given me a deeper understanding of what it is like to be an autistic person. Imagine you are trying to write a letter, something important but as you are doing that there is loud music being played, flashing lights, people tapping you on the shoulder...... thats the best way to explain what every day normal life is like for an autistic person.
I had Harry's SLT report today and I had to read it twice. Being the eternal optimist I can see improvements in H all of the time, I even find myself thinking " is he REALLY autistic?" but when you read reports such as this it is like having salt rubbed into an open wound. It hurts.
We all love our children and we would walk over hot coals to protect them so can you imagine how I feel reading an official document which highlights all of your sons "failings". This is yet another thing parents of autistic children have to deal with.
I get stares over Harrys behaviour, I get tuts, looks of disgust but also I get the odd kind smile or hand on my shoulder.
Autism is a horrible condition in a world dictated by neuro typical people. I adore my son, he is autistic and I love him in spite of that, in fact I love him for that fact. Little things, little breakthroughs give so much more pleasure. Things like.... being able to eat mixed up food, being able to describe things in detail, using a knife and fork to eat...... simple things that parents take for granted.
I never had the normal toddlers.... my children couldn't speak or communicate, I had to deal with temper tantrums and frustration which was distressing for both me and my boys. So now, when I engage with a toddler, I never ever cease to enjoy their babble, their chat and interaction because that was something I was robbed of.
So all I ask is for tolerance of people.... You see that face in the crowd but you don't know their story. Don't brush past, give a smile and give your understanding.