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Taking the Good with the Bad

Taking the Good with the Bad

Sometimes amidst the chaos of it all we lose sight of some of the amazing things that happen in our lives.

It may only be a micro moment or a small reflection at the end your busy day.

But I realise the importance of that as we approach Amy starting her first year of school.

My mum noticed the other day how much better Amy's gross motor skills are getting.

When you are with someone every single day sometimes the changes happen so slowly that they entirely pass you by.

It made me stop and think about it for a moment.


Her purposeful hand movements have become much more controlled.

It's incredible.

You can really see as she looks at her target and works her brain hard to control her arm to go the way she wants it to... this is no easy feat for Amy and she is handling her frustration about it really well.

I attended the school leaver's assembly.

Most of the nursery class were there.

It was a very emotional time as I am sure many of you can relate.

It is the end of an era, it is the end of a chapter that has been an almost daily ritual for two years.

As I watched the slideshow of photos I saw not only how much everyone had grown in size but also in improving their social skills, their motor skills, and understanding more about the world around them.

The speech about Amy was about her persistence and how she has so much potential that she hasn't yet fully unleashed.

It's all very exciting when you think about it that way.

We spend a lot of our time either consumed it our errands like phone calls, appointments, medications, therapies, paperwork and so on, or we spend time complaining and dwelling on how much harder things can be for us.

But it's nice as much as you can to try and force all of that stuff out of your head and reflect on that days' achievements.

I always joke to myself that with each new thing we try and fail I should just get a big "you tried" badge for myself.

All the times I instigate messy play or an art exercise and have it quite literally thrown in my face.

It makes you want to just stick to what you know and never try anything new... but we can't... it isn't fair on her.

We just spent three days at a seaside resort called, "Blackpool".

You may have heard about it.

It's all arcades, fish and chips, prices to be won, lights and all that jazz.

We stayed at the amazing Donna's Dreamhouse (if you ever get to apply to go there I recommend it hugely. Or, if you are looking for somewhere to donate money to... there's one suggestion!).

We went to the Sandcastle Waterpark.

I was bursting with trepidation and anxiety after one of the most behaviourally challenging mornings with Amy ever.

But we had to try.


The staff couldn't do enough for us.

There were not one but two fully adapted changing places.

We were assigned our own first-aider and offered to have Amy hoisted into the pool.

There was a height adjustable shower trolley, hoists, and even the sink was height adjustable.

It was an absolute dream for a family like ours.

Already I thought to myself "even if she hates it here today... this place is awesome and we can come again another day when she's feeling a bit happier."

But no - to our surprise she adored every moment.

We carried her through the river rapids, had an unsuspecting bucket of water tipped on our heads, played with fountains... and we even managed to sneak in some stretches and secret hydrotherapy moves!

So, it always goes to show:

Even if you're having the worst day ever... it can get better.

If your child hates something one day... doesn't mean not to try it ever again.

Just take a deep breath, accept that today is not the day, and try again when you have the energy reserves and patience to know that it could be rejected again... or thoroughly enjoyed.

What can be a disaster one day for us, can be the best family memory making day ever.

Our trip to the zoo was much the same.

Previous visits have involved Amy becoming highly distressed disinterested, and the trip cut short.

This time we had this happy little four-year-old who compromised by having her music on for the whole trip... but also looked at the animals with interest and actually paid attention to the world around her.

It was incredible for Phil and me as parents because for so long it has been Amy's way or no way.

It is often like that now still, but at least now we have devised more ways to try and keep her calm and happy.

Tomorrow we will be spending the day in the city hospital for tube change day.

It's usually a very long stressful day with sedation and a groggy Amy.

Days like that are what often bring me down.

I know that as she sleeps and I hold her hand, I can scroll through the pictures from our mini get away and smile to myself about the lovely memories made and how proud she makes me every single day.

So, if you've been stuck in meltdown city this past week... keep calm, breath and know that tomorrow may be a better day... and if it isn’t... you're resilient and made of strong stuff... you'll get through it like a pro.

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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