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Hold On To the Positives

Hold On To the Positives

Emily Sutton’s husband, Matt, has hijacked her blog, and here’s what he has to say:

I don’t need lots of sleep, I can cope with disturbances such as my five-year-old climbing into bed for a cuddle at 3am.

Indeed, on the occasions my wife would like a cuddle at any time during the night that is always welcome so long as I get five or six hours and a good few shots of coffee the next morning I am more than functional.

Every now and then things catch up with me and on this particular Friday night I declared to Emily, my wife, “I am absolutely shattered! I’d like to convert my daddy voucher into a lie in tomorrow morning”.

The request was passed, and a restful night’s sleep prevailed probably with the sub-conscious positive foreboding of the prospect of an extra two or three hours sleep.

Although sometimes I struggle to make the most of a lie in because if I wake up I struggle to get back to sleep.

But this Saturday was perfect, I woke to the smell of fresh coffee from downstairs, cuddles from my boys and a re-assuring smile from my wife that meant that everyone was happy, things were under control and there was no urgency to accelerate my slow slumbering start to the day.

My relaxed demeanour wasn’t the only change to our Saturday morning routine – usually, I take our youngest boy, Coby, to Little Kickers.

Emily had already requested that she would take him on this occasion which meant I would get some quality time with Jenson, our eldest boy.

I planned to take him to our regular butcher to get the BBQ meat for the weekend and then to the local splash park, which is one of Jenson’s favourite activities.

Jenson has a rare chromosome disorder which manifests itself in many ways with mental, physical and learning disabilities.

His disabilities influence his behaviour and consequently mine and Emily’s behaviour in terms of what we expose him and us to as a family.

We often find ourselves asking should we take him shopping and absorb the judgmental looks when Jenson begins to tantrum when we are queuing at the till or should just one of us go shopping and not expose us all to the potential risk.

Discuss - maybe one for another post.

On this Saturday Jenson and I went to our butcher.

They know Jenson, Coby and me.

Usually Coby and I go and see our butcher men after Little Kickers, but today Jenson and I went to see them.

There was no queue, so I went straight into ordering our meat.

My mind at this point is busy.

Do I want the chilli sausages or Cumberland?

Jenson was walking around the butcher generally behaving.

Will he run outside into the road?

Will he run behind the counter?

Will he invade another customer’s personal space?

He was good.

He found a chiller cabinet with a sliding door and proceeded to amuse himself with a satisfyingly repetitive opening and closing action.

Again, I was uncertain as to whether this was acceptable behaviour, but Mr Butcher put me at ease by explaining how his grandson always does the same thing.

So, I felt at ease letting Jenson amuse himself in this way and finished my transaction.

However, a queue had formed, and a very elderly gentleman had taken exception to Jenson playing with the chiller.

The elderly gentleman slammed the chiller door closed, scowled at Jenson and looked at me to discharge his opinion of my incompetent parenting to let my five-year-old play with a chiller door.

Jenson was upset, I was angry with the old man.

Yes, old man, not elderly gentleman anymore.

I don’t know how much I paid for my chicken, burgers and sausages.

My mind was consumed with wanting to react angrily but supressed by the empathy for an old man that doesn’t know the bigger picture.

As Jenson and I left the butcher the old man said, “I would have got a clip round the ear for that in my day” and as much as I wanted to retort, “Euthanasia is legal in some countries”, I didn’t.

Still on a high from my lie in, the prospect of the weekend’s BBQ and still supping my flask of coffee prepared by my lovely wife, Jenson and I proceeded to the splash park.

We frequent the splash park regularly and it is a relatively safe place for Jenson.

Though I still must be on high alert as a parent as Jenson is very tactile and loves to hug other children or simply invade their personal space which as I’m sure you can imagine can go one way or another.

Unfortunately, it does often mean that we must leave such places prematurely or at the very least, make a handful of humble apologies to the parents of the harassed children.

Today Jenson invaded the space of a boy called Sam.

He hugged Sam, but rather than get pushed away, Sam hugged him back.

Jenson made the sign for “friends” before taking Sam’s hand and leading him to play in the water showers.

This whole short episode took me by surprise and I watched on, in growing wonder of the events unfolding before my eyes.

The next hour or so passed with Jenson and Sam playing together, forging a friendship through non-verbal communication, with hugs, hand-holding, splashing, running, chasing and lots of laughter and fun.

Sam was brilliant with Jenson.

He didn’t seem to care about Jenson’s rather direct interpretation on how to make friends and simply embraced it and accepted him for who he is.

There are many children who would accept the odd cuddle or approach from a strange child, but there are very few children that would choose to spend the next hour with that child, in preference to returning to their ‘age appropriate’ peers and activities.

Sam sacrificed his regular play, his regular activities, for spending time with Jenson.

I’ve never believed in things that were “meant to be” but maybe they are?

My wife had organised a skating session at our local skate park for our community of special needs families, I naturally wanted to invite Sam and his family and to mine and Jenson’s delight they accepted, changed their plans for the day and became part of our community.

I made a new friend in Sam’s mum and I am certain our families will become closer in the future.

Sam and Jenson played together in the afternoon at the skate park and they have both ended the day each having a new special person in their lives.

The moral of the story, the final thought.

Take from this information what you will but if you listen to me please don’t think I have any validated wisdom because I am 36 years old and ride a skateboard!

Take every positive out of your day, hold onto it, keep it close when the negatives try to invade.

They will dispel as quickly as they attempted to precipitate into your thoughts.

But above all else remember:

Respect your elders, even when it’s difficult, and welcome in the wonders like Sam.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emily Sutton

Meet Our Blogger

I was launched into the world of special needs on New Year's Eve 2012, on the birth of my son, Jenson. He is fabulous, sprightly and loving, and has redefined our lives. I am now a 'qualified by experience' therapist, clinician, secretary, taxi, PA, nurse, and in my spare time I am trying to be a good mummy. I am an auditor for the NHS and along with my husband run an accountancy business from home. It's a busy household but Jenson's extra genetic material seems to have given us all extra special powers!

View Emily’s Profile

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