So the purpose of this blog is to see the funny side of life. Life may be very difficult right now but I still have my sense of humour. I can only compare my life at the moment to one of a slug. I spend most of my time horizontal and moving slowly from room to room. The difference is I have arms so while I may feel as useless as a slug right now I still have the ability to type.
So now, here I go again and I suppose ultimately and selfishly I wanted to feel I have gained something from my ramblings but equally if I can help others in similar situations that would be fantastic. Some of what has already been written was done with tears and some with laughter and hopefully you will see the rollercoaster life that we lead in living with autism.
It might be that your child has severe epilepsy and disabilities, but no diagnosis. Keep pushing, keep exploring the different options, and rarer conditions like Dravet and CDKL5. But more and more children are being diagnosed with CDKL5 as awareness spreads. We can all do something to share and make others aware of these condtions
Did you know that three people will die today because of asthma attacks? Preventable asthma attacks. We all know someone who has asthma, 1 in 11 people have the condition, but because of this there is a common misconception that as an illness it is sorted; 'you just take a puff on your inhaler and you'll be fine'. But many people are not fine.
I've been at The National Autistic Society (NAS) for over eight years now and I'm still taken aback when I hear just how difficult it is to get a diagnosis - the days, months and years of pain and distress families have to go through just to understand who they are and to have a chance of getting support.
The impacts on everyday tasks are huge. Picking up cutlery on a laid, full table and eating a meal is terrifically tortuous for him such are the fine spatial and visual skills needed. He sees everything, all seemingly separate unconnected objects; this photographic memory is a handicap as well as something incredible.
It's every mother's greatest fear that she will have to leave her children. My daughter Kate Gross lived with that fear for more than two years, before she died of colon cancer a few weeks ago. I wish she was here now so I could tell her that the boys are getting on just fine. Oscar and Isaac were three when Kate was first diagnosed. Twins, but very different little beings. Oscar dark-haired, violet-eyed, solid - and with an astonishing ability (in Kate's words) to 'focus on things, to know them utterly'. Isaac, blond and agile and restless. 'Each of them,' she says, 'carved out his own space in my heart, a space which fits him exactly.'
I don't like my labels. I didn't ask for them, and I would certainly rather I didn't have them. But I do. They don't define me, and they're not all I am, not by a long shot. But accepting them, rather than fighting them, has brought me just that bit closer to being able to manage them. So go ahead, label me, it helps. Just don't judge me.
Right at the beginning of Jerome K Jerome's masterpiece "Three men in a boat," the hero picks up a medical dictionary and discovers that he has the symptoms of every disease mentioned with the exception of housemaid's knee. The prescription he is given surprises him. After beer, steak, exercise and early bedtimes, it ends with the words "and don't stuff up your head with things you don't understand."
For many, these fears don't evaporate when they finish treatment. We spoke to post-cancer patients and found that nearly a third (30%*) felt under pressure to 'bounce back' more quickly that they would have liked after treatment. For more than a quarter (28%) the expected 'euphoria' of being given the 'all clear' was actually replaced by the fact they simply felt 'emotionally drained'.
As atmospheric carbon levels reach seemingly implacable heights, the degree to which sustainable solutions must be implemented follows suit. And yet, little headway has been made on this critical issue, at least according to recent forecasts from the Intergovernmental Panel on Climate Change, which released its Fifth Assessment Report earlier this year.
When I'm depressed it's really pronounced - I can go from ok to dangerously low to barely contained anger in a matter of hours. When I'm well, my mood tends to follow those around me - if I'm with people who are in good form, I'm in good form. If there's stress or angst around me, I take it on. As Therapist described it today, I'm a chameleon when it comes to mood.