Disability, anxiety & Gannin’ along the Scotswood Road…

The last couple of weeks have been, to say the least, stressful. It started with me dashing home from work after a hysterical call from my 16 year old son. He’d been the target of a local gang of young louts who don’t like disability or difference, and think an adult sized person who’s as easily frightened as a small child is hilarious. Luckily a neighbour had seen this, called the police, and stayed with my son til family arrived.

The fact that this had happened on the day that most of my Facebook feed was applauding the country’s recognition that disabled people have talent rankled. I think Lost Voice Guy is great, he’s a local comedian who I’d seen before he entered Britain’s Got Talent. But his win is not a show of how well respected disabled people are in this country.

Sadly my son’s experience is more typical of what people with disabilities face on a daily basis than Lee Ridley’s acceptance by the nation. And it didn’t stop on Monday. I don’t want to go into details, but it’s ongoing, immensely stressful, the last thing my family needed during both kids’ exams, and utterly heartbreaking. I will say that the police recognise hate crime when they see it and are taking it really seriously, and everyone I speak to is sympathetic and supportive, but the damage one gang of stupid kids can do is immense. Even when they inevitably get bored and move to a new target it will take a long time to restore my son’s confidence and rebuild the small measure of independence we’d worked so hard to build for him.

It’s got me rattled too, since defending my son the same gang is yelling abuse at me when I see them around the estate. It’s had me questioning including photos on this blog, recording my activities on strava, even walking to the local shops on my own. I feel constantly on the verge either of tears, or of losing my temper so badly I’m afraid of what I might do.

It’s amazing how quickly long held values disintegrate when your own family comes under attack. I didn’t like the level of surveillance we all face day to day, now I want cameras everywhere. I’m firmly opposed to violence against children, but I want to retaliate to these kids violence against my son. I didn’t believe locking kids away was a solution, but I want these kids off the streets.

But mostly I want my son to feel safe and happy, and I hate that I can’t make him safe or happy at the moment.

The Saturday before all this started my son did his first parkrun. For a young man with his additional needs just getting around 5k is a massive achievement. Doing it in the crowded environment of Newcastle parkrun, on an incredibly hot day, was fantastic. I’m trying to help him hold onto the pride he felt that day during the challenges he’s facing at the moment.

The Saturday after all this started was the Blaydon Race. This was a run I desperately wanted to take part in, and was overjoyed when I got a place…

As a small child on a visit to London my dad and grandad convinced me they’d told the palace we were coming, and that was why the guards played the Blaydon Races during the changing of the guard that day.

As a small child witnessing my brother getting stung by a bee I insisted to my mother that the bee had flown off “laughing, and humming the Blaydon Races.”

When he was younger the Blaydon Races was one of my son’s obsessive interests, leading to many visits to local museums and my mum’s puppy getting the name Geordie Ridley.

Image from Pinterest

The Blaydon Race is an athletic race, not a fun run, and despite the celebratory atmosphere it felt like a more serious event than any of the others I’ve done to date. This in itself made me feel closer to my grandfather, who won medals and trophies for running races in the 1930s, one of the many things I wish I’d talked to him about before he died when I was 13.

But I’d had a rubbish week and the stress was pushing me closer to an anxiety attack. I’d arranged to meet friends from running group to go to the starting point together, which got me through the initial “everyone here looks more like an athlete than me” worry.

My aim was to do the 5.7 miles in under an hour. The race started well for me, the first three miles went brilliantly. Then the sun came out, unexpectedly, and I started to struggle. I had to slow to a walk, and that was when the anxiety kicked in. “If you can’t run the whole way you shouldn’t be here, how are you going to cope with 13 and a bit miles if you can’t manage 5, you should just pull out now, you’re a fool to call yourself a runner…” And on, and on.

At one point at about 3.5 miles I was walking, struggling to breath, trying not to cry, unable to hear anything except anxiety lying to me.

“SALLY, YAY, COME ON!”

A shout from a friend on the other side of the road, with a grin and a wave, broke through, and I smiled back, took a few deep breaths and started running again.

Anxiety lies.

I am a runner because I lace up my trainers and run, even when it’s difficult.

I am an athlete because I know my body, and I recognise when I’m pushing too hard and know when to take a break. That’s not failure, that’s strength.

I will do 13 and a bit miles, bits of it will be tough, but I absolutely will do it.

Crossing the finish line I felt like it had been a bad run, I’d had to walk too often, I really struggled with the heat and the few uphill sections.

But I’d achieved my target of under an hour.

When I looked at my heart rate I could see I’d needed to slow down, and looking at my pace I certainly hadn’t walked for longer I’d run.

Anxiety lies. It was a good run and I adapted as needed to the changing conditions. There was great support both from other runners and from spectators. Next year I’d like to do it again, in a more positive frame of mind, and with a more consistent pace, but for a first attempt this was a good run.

Since then I’ve run over 9 miles for the first time, completed my 30th parkrun, and kept running despite the stress. It helps.

– – – – –

I’m trying to raise funds for two great charities that support my family, SWAN UK and Newcastle Carers. Any donations to help me reach my fundraising target would be greatly appreciated and put to good use. Sponsor me here.

Advertisements

Pondering Certainty #Undiagnosed

Something a little different today. Three years ago my then 11 year old son asked me to stop writing my blog about his disability, so I stopped, and several years of posts are no longer visible. Now my blog is mainly about me trying to get healthier, physically and mentally, interspersed with random pondering on life, the universe and everything! But on Undiagnosed Children’s Awareness Day my son accepts that I can write about him to raise awareness without breaching his privacy. 

(Image by Swan UK)

My son has an undiagnosed genetic condition. A lot of people don’t realise this is possible. The normal experience is 

  1. Something is wrong
  2. Doctors investigate
  3. Something is diagnosed
  4. A treatment plan follows

But its not always like that. 6,000 children born in the UK every year will have a genetic condition which remains undiagnosed. 

Some children are undiagnosed because things stall at the investigation stage, tests show nothing despite there clearly being a problem. This may be because they have a genetic difference too small to be spotted by current tests. Some are eventually diagnosed, but only after many years of uncertainty and testing. Others, like my son, are undiagnosed because a genetic difference is identified, but it doesn’t link to any known condition. As DNA testing advances, and can spot smaller and smaller genetic differences, this group is likely to grow. The clinical side can’t keep pace with the genetic side.

My son has a genetic diagnosis, a string of letters and numbers that documents exactly which genes make up his extra chromosome, but no clinical diagnosis. No idea how it will progress, what he can expect as he grows up, or even whether it’s the whole extra chromosome, just one gene within it, or something completely different that causes his disability. He does have a list of conditions: global development delay, moderate learning disability, severe dyslexia, severe dyspraxia, autistic traits, sensory issues, speech and language issues etc. etc. But these are each just a part of the jigsaw puzzle. We’re missing many pieces and can’t find the lid with the complete picture on it. 

Things have come a long way since my son was little. There’s a charity, Swan UK, providing much needed support to families of undiagnosed children. They launched when my son was 8, before then I’d been struggling alone. With them we have a network of supportive families going though similar situations. My son loves meeting other undiagnosed children, and strongly identifies with being a Swan child, with having a Syndrome Without a Name. But many people still think you need a diagnosis to get support. 

(Image by Swan UK)

My son has grown into a confident cheerful young man, who talks openly about his genetic difference and the difficulties it causes him. He can explain what support can help him cope when things are difficult. He’s becoming a wonderful advocate for himself and other undiagnosed children, he thinks as many are non-verbal he should use his voice for them too. Today he’s persuaded his school to raise money to support Swan UK. Nothing is certain, we really have no clue what the future holds. That does worry me as he moves towards adulthood and I see services failing, but we are supported. 
Society seems to be craving certainty more and more. Everyone has to have a definite opinion on everything, it’s got to be certain, it’s got to be now, ideally in a short soundbite. Facts are less important than how convinced you are. Saying you would have to study something in detail and then make your mind up is seen as weakness. There’s no more discussion, no debate, no prospects it seems of people changing their views, just name calling and division. 

Perhaps its because I’ve had to come to terms with so much uncertainty at home that I find this especially challenging. 

I don’t believe things are that simple, that definite. I’m rarely certain of anything. I think the drive to certainty creates a harsher more divided society. Everyone has to be on one side or the other, for or against, in or out, right or wrong, and the opposite side is the enemy. What if the solution isn’t in or out, what if it’s up or down or diagonal? What if the world is not made up of the right and the wrong but of many possibilities, each with the potential to have good and bad effects? 

The Swan community is made up of families who encountered a possibility they may not have planned for. My son’s genetic difference is a random blip, a spontaneous mutation affecting every cell in his body. And then affecting every person he meets. It can be isolating, it can be frustrating and it can cause stress, but it has also brought us into a wonderful community, showed us how strong and resilient we are, and improved our lives. Just because it’s uncertain doesn’t mean its terrible. 

I think that’s another lesson for life. 

– – – – – 

Please visit Swan UK to find out more. You can donate to support their work by texting SWAN11 £3 (or any amount up to £10) to 70070. 

Swan UK want to reach as many families with undiagnosed children as possible. Please pass on this information to any family you know who have an undiagnosed child.