"Shake The Disease"
It's been a tough month. Let me tell you about Tuesday 8th September.
As you get older, things stop working. Things change. The perfect ideal, the moment when your hair was perfect, the sun just right – this never lasts.
Early September, we reached the end of a journey which has taken us four years. When he was born, our son was perfect. He still is, in so many ways. Over time, it became apparent that, whilst every child grows at different speeds, and in different ways, and most of them all get to where they need to be eventually and in time, our boy was different. His language was slower to evolve though his understanding was clear and advanced. He couldn't find the words to express himself, though clearly they were in his head. His grasp upon language was slower. His bodily functions, and control, were less precise. There were toilet issues. Going to sleep on his own was difficult, and his internal chronometer was varied. There was little concept of time, so sleep was difficult and rarely happened at any set time. The bedtime routine was haphazard. Sleeping all night was, until the past few months, largely unheard of. He would wake up and interrupt, wake us up, or ask for one of us to be with him. It placed enormous stress and strain on us, and often, we nearly broke. Parts of our life, parts of our personalities, were chipped away and fragmented. Bits of us fell away.
Our boy grew up. For a while, and it's over four years now, we felt that there was something about him that might need a diagnosis. Each in isolation was not really an issue. Combined together, each felt like a brick in a wall, a combination of factors that together created a bigger picture, an it felt like a former of ADHD or Autism. Combined with the changing economy, and savage government cuts in support and a higher bar to entry, it felt there was a sort of cruelty in the timing. Of doors being slammed in our faces.
I hate the fact that we’re all being pushed to be ‘generic’, and if we’re not an assembly-line clone then we’re somehow treated like we’re flawed. We're all meant to be smart, and clever, and emotionally intelligent, and be able to do all the things. What's wrong with just being... us? The best of ourselves we can be? Whats wrong with being a little 'weird'... if that's what we are?
Our path was long and a hard. Consultants. Specialists. Treatments were denied, and appropriate behaviours denied, which made our life harder, and of course, his. He's a person too, our son, with his own feelings, his own hopes and dreams, and one day may change the world, or at least, change someone's world. But for the past four years, he's been the difficult kid. I may have been similar when I was growing up, one of the weird kids, but then, we were all weird in our way. The world has evolved since then. Society has moved on. But we are still the same people.
So we started a long long journey. I remember in 2011, we began it, the walk towards some kind of diagnosis. We met a consultant who was convinced we were imagining it. Or that it was because of insultingly irrelevant factors. A consultant who later left, and was replaced by someone else who seemed to actually know what they were talking about. That non-diagnosis hurt us, and put us back two years. I can't say definitively that that person was incompetent, but well... in my eyes, he was. With his long overdue departure, a much more understanding consultant came in, and saw what was screamingly obvious to us. Quickly we were re-assessed, all whilst our three, four, five year old boy still wouldn't sleep or toilet or interact in line with expectations, whilst our family was being torn apart by exhaustion and unnecessary burdens, (in the midst of which, I too, was having my own, not inconsiderable career turbulence in the midst of the worst recession in eighty years). And at last, we were heard. We were heard. After years of speaking, we were heard.
And, after multiple assessments, test, observation sessions and discussions, we were brought into a room the other week, and informed that our son fulfilled the crriteria for Autism with Decision Avoidance Features. At last. Having a diagnosis is better than not having one, though sometimes it's heartbreaking to know that this little boy I adore isn't 'normal'. He has a gift of thinking, a different operating system to most humans, and his life will not always be easy, but it is a superpower in a way, and one that will change his life and those of everyone else. But also, he is … just a boy with a love of Lego. It's recognised now, and there's a structure in place to support him, but still, in the eyes of the DWP he qualifies with a disability. It's always a battle, this life, but now... the enemy has been identified and we have some weapons.
That was Tuesday.
Thursday 10th September was a difficult day. For a long time at home, we've had health issues. Tina, for a while, health issues. Some nights we've been kept awake by an involuntary jiggling. Other days, the hands and feet aren't working properly. Grasping is difficult, walking hurts, and co-ordination is difficult. Loss of vision. Muscle spasticity, and a lack of control. Difficult balance. There's been moments of difficult vision, extreme fatigue. Exhaustion.
Coupled with the a very demanding autistic child, it's been a hard and lonely walk the past few years. There have been good times and bad times. The symptoms normally manifest themselves between 15 and 40, and are three times more common in females. The later they manifest themselves, the better. There comes time for conversations, spinal taps, lumber punctures, MRI checks, virus tests, meetings with consultants and specialists. The list of possibilities narrows to just one or two, and the certainties grow over time. By a thousand tiny steps, it becomes more and more likely what it is, and more likely what it isn't. Words like “Autoimmune” become common. Words like tissue damage, and hardening become frequent. Myelin. And there is no known cause. Words like “reduce life expectancy” become a fact of the matter.
We get copied into letters. GP's write to consultants and discuss treatment plans. We find out about Relapsing Remittance Multiple Sclerosis with a sentence buried in a fifth paragraph, that her symptoms fulfill the diagnostic criteria of the 2010 McDonald definition of Multiple Sclerosis.
That was Thursday.
Thursday, Multiple Sclerosis.
And that was just one week in our lives. Be we carry on, as normal as we can, because that's what life is.