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What I Learned Yesterday…

By Marcus Santer

The Sunday Quote:

“He who has felt the deepest grief is best able to experience supreme happiness.”
Alexandre Dumas

You can’t get a pint into a half-pint pot without making a bit of a mess.

And by the time Clarabella and I arrived home last night we were exhausted.

How come?

Well, we’d spent the day at an event hosted by HemiHelp, the charity for children and young people with hemiplegia.

From 10am to 5pm we were saturated with presentations covering subjects close to parents of children with hemiplegia.

It was in equal measures:

Here’s a microscopic snapshot of what I personally took away from the day:

Getting the right support in education – Sometimes you’ve got to fight to gain access to the materials needed for your child to get the most out of their education. I must admit, listening the the Q&A afterwards I realised how lucky we are that Ollie goes to the school he does.

Hemiplegia and epilespsy – Witnessing Ollie having his first seizure at stupid o’clock in the morning is an event I will never fully recover from. Fortunately he’s only had a couple of them and fingers crossed they’re not going to be a regular part of his life.

Treatment is available, but I never knew it can take several months for medication to reach a therapeutic dose. And several months more to reduce the dose if the medication treatment is the wrong one.

I also found it very interesting that the ketogenic diet has been found to benefit people with epilepsy. I wanted to find out more, but the speaker didn’t have any more to share.

But I did find this courtesy of Wikipedia:

“The ketogenic diet is a high-fat, adequate protein, low-carbohydrate diet that in medicine is used primarily to treat difficult to control (refractory) epilepsy in children. The diet forces the body to burn fats rather than carbohydrates.”

Very interesting and definitely a subject for further research when time permits.

Hemiplegia and autism – I left this presentation feeling overwhelmed by how difficult autism is to diagnose and treat. With so many different components at work and with them changing at different parts of the day I realised how difficult a condition ASD is to treat and to manage.

Every person with autism is unique but they will all have difficulty in these four areas:

  1. Social communication
  2. Social understanding
  3. Imagination and flexibility of thought
  4. Sensory processing difficulties

As the speakers went deeper into their presentation I could feel myself checking some of Ollie’s behaviours off. During the break Clarabella and I discussed how when Ollie was at primary school his physiotherapist at the time had wanted to have Ollie assessed for autism, but we’d decided against it.

After this presentation it’s clear to me that Ollie is on the autistic spectrum, but I also found myself thinking that most of the people I know demonstrate characteristics and behaviours that would place them on the spectrum somewhere…

We’ll see.

Perspectives of living with hemiplegia and autism – This was a speech given by Justyn Rees Larcombe and personally I found it one of the most emotionally challenging presentations of the day. Long story short, there was a lot in his story I could relate to.

I spoke with him privately after the event and he reminded me of some home truths.

You should read his book: Tails I lose – it’s available on Amazon, he generously gave me a free a copy. Though I warn you…

It’ll make you cry.

The emotional impact of having a child with a disability – This was the last presentation of the day but it was the one I really wanted and didn’t want to listen to in equal measure.

I still have a lot of anger, fear and grief locked up inside me as Ollie’s dad.

Over the years I’ve managed to keep a tight lid on it, but every now and then some of it escapes and it’s powerful.

Destructive and creative.

But I was concerned I might lose it during the talk and behave inappropriately.

But I needn’t have worried, the talk focused mainly on stress and how to manage it. Familiar territory for me, though I did pick up a nifty addition to the Fight or Flight stress mode. I shall now on be referring to it as the: Fright, Fight or Flight mode.

Neat.

Like I said at the start of this long and self-indulgent ZEN+ Daily, by the time Clarabella and I got home last night we were exhausted.

Ollie had spent the day with my mum and dad and he suitable put us through the emotional ringer for having disrupted his usual Saturday routine. But as shattered as I was, I had a new understanding of how the world filters through to Ollie and gave him a hug instead of balling him out for being so stroppy and surly.

Key Message of Yesterday?

If you’re struggling with anything in your life:

And everything in between…

Fire up your Internet browsing device of choice and look for help and support. I’m amazed how many different charities and support groups there are out there. You can bet if you’re dealing and being overwhelmed by something – You’re Not Alone.

Getting support and help doesn’t make you weak, it makes you smart.

It doesn’t make you a failure, it makes you a fighter.

And trust me, nobody knows what you’re going through like someone who’s going through a similar experience. While solutions are hard to come by, simply sharing your story and getting it off you chest can be incredibly healing.

Don’t struggle on your own.

With love.

Marcus