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We’re All In This Together - The Continuous Learning Curve

We’re All In This Together - The Continuous Learning Curve

Over the last five years I feel I have really encountered a lot. Special needs parents will have their perceptions of the world shifted significantly.

They will have probably several profound life altering moments in a short space of time.

They’ll witness a lot - things that before having their child they never could have anticipated.

They will see beauty in the smallest moments and compile them all together so that they have something positive to reflect on when times become overwhelming.

They will most likely at some stage wonder where their place is in the world. Our normal isn’t like most people’s normal.

We find ourselves having to translate our conversations to others and we can see them withdraw and become awkward at times.

The funny thing is that our normal… somewhere.. Is the same normal as someone else’s.

For every few thousand lives that can’t relate to ours - there are other people speaking our language and coasting along with the ebbs and flows of special needs family life.

One of the main recurring phrases that comes to mind is "we are all in this together" and it's so true.

Recently my daughter turned 5.

Birthdays are a real time of rumination and reflection for me.

I find myself simultaneously in awe of how far we have come; but equally grieving hard at what we have had to overcome and the challenges we have faced along the way.

There is a deep and intense pride and relief that she is still here; but there is the painful agony of reliving in my mind those uncertain early days.

This year we opted for a bowling party. Every child we invited had additional needs and I had put a lot of effort into making sure the event went as smoothly as possible.

It sounds pessimistic - but I have found that the best thing to do is expect the worst.

I fully expected either to have to cancel our appearance entirely due to hospital emergencies, or I expected full blown meltdowns and tantrums causing us to vacate the event early.

I expected explosive nappies and inadequate changing facilities. I imagined a chorus of every child at the party harmonising in a symphony of sensory overload and squealing.

I laughed to myself at the image of issuing each parent with ear defenders… for themselves!

I had finally learned the lesson that actually, I am not in control at all.

Epilepsy, cerebral palsy, chest infections, neurological irritability - none of it cares how much I want my daughter to enjoy her Birthday party. It might sound silly - but this is a big lesson for me.

As someone predisposed to anxiety and outbursts of emotion; it’s a tough pill to swallow when things don’t go my way!

Prior to having Amy, I was fastidious in my planning… I was always early, always over prepared. If I wasn’t early, I considered myself late.

I would be a flustered, palpitating mess. I have had no choice but to accept that sometimes… leaving the house at the time I want to or need to, is not always possible.

Anyone who can’t handle that isn’t worth knowing. So I threw caution to the wind and thought “what will be will be”. We can only do our best.

We are all in this together.

How did it go I hear you ask? Swimmingly. Honestly. It went really well.

The day before, Amy really suffered with her seizures. Recently they’ve been really bad. But strangely, on this day, I witnessed maybe only 5 small seizures.

Initially she had a big meltdown… transitioning and traveling is still a challenge.

One by one our little guests arrived. Most had never been bowling before.

It felt a bit like a social experiment!

The amazing thing about this party was that every child had their own set of diagnoses and each one adapted to the event however they could.

Some could walk with a bit of help if a walking frame or a parent, and could push the ball down the ramp themselves.

Some would be pushed over in their chair and with a bit of prompting could push the ball. Some needed more help pushing the ball but thoroughly enjoyed a “1...2...3…” buildup in anticipation of pushing the ball.

I would be lying if I said there were no meltdowns...

But the beauty of it was that we have all seen it before. There was no silent judgment or staring, no tutting. Just a group of parents that “got it”.

Each parent knew how much it meant for their child to get invited to a party, and how important it is to be included and have an activity catered towards their unique set of abilities.

I honestly feel quite emotional reflecting on it. The goodie bags weren’t sweets and yoyos.

They were sparkly sequin snap bracelets, a drawstring bag that could be reused and hung up on a wheelchair with supplies in, bubbles, a piece of cake (mainly for the parents in our case as we only have a few oral eaters with us), light up rings/glasses, and a nice smelling squishy toy for the more tactile approving child.

I am so proud of every child and parent that attended.

Sometimes just leaving the house and doing something you’ve never done before can be a huge deal.

One parent thanked me saying they’d never have considered going bowling as an activity as it’s one you tend to associate with being able bodied.

I can’t take full credit - my idea for the party came from watching a video Amy’s respite recorded of Amy pushing a bowling ball with purpose and precision.

I couldn’t believe my eyes when I saw the video.

I have great belief in what Amy can achieve, she already does so much more than we were ever told to expect; but at the same time, I try not to expect too much and appreciate all that we have.

To see her engage in an activity that doesn’t involve electronic toys or YouTube is a massive achievement.

It’s sometimes so refreshing to be around profound/severe disabilities and things be accessible, inclusive, and positive.

My tether to my old reality has loosened and I still find myself in unfamiliar terrain sometimes, but I love that we are all adapting and finding ways to make our normal work.

One of Amy’s friends was unable to attend due to family illness, but his mum still managed to drop off the most impressive Birthday cake I have ever seen.

I didn’t know what the design would be so was very surprised to see my daughter’s favourite ever toy appear before my eyes in cake form.

When we showed her she tried to bash it as it looked so much like the toy! (It’s a wobbling toy that you hit to make it sing). It was such a funny moment.

Separate to this we also had a small family gathering at our house. It was so lovely to see Amy so happy to see everyone.

The year before she had been quite unwell and lethargic and didn’t respond to anyone who tried to interact with her.

We are very lucky to have family that adapt to our normal and will do what they can to be a part of it and understand it all.

Amy may have got a lot of fantastic Birthday presents but I truly believe I got the best present that day in seeing my child have a nice day with her friends, doing what everyone else gets to do, and enjoying it.

I will never forget that day and will always be grateful that it happened.

I am learning lessons all the time, and I am so grateful that we are all in this together rooting for each other to make this the best life possible in spite of the curveballs get thrown our way.

Firefly Blog

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

Ceri-Ann Brown

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!)

View Ceri-Ann’s Profile

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