Twinkle Ball 2018

As many of you will be aware (after the abundance of photos that have been put up of late) – that my sister and I were fortunate enough to attend the first ever Twinkle Ball last month.

The ball was hosted by Paddy and Christine McGuinness and it was in aid of the National Autistic Society – an event alone that raised over £100k on the night!

As you may have guessed it was a star studded event, covered by OK Magazine (the issue goes to press today), so we have had to refrain from posting pictures of guests until now as the magazine donated a generous contribution for exclusivity of their own shots.

One of those guests was the very funny Keith Lemon who I managed to get a picture with.  He kindly donated his time to have photos taken with some of us ordinary folk!

I’m sure he was supporting his partner-in-crime Paddy out of dedication for a cause close to the heart.

You see, for those that haven’t seen in the media already, the McGuinness family have talked quite candidly about having four year old twins with autism and the challenges that brings them as parents.

By talking so publicly this decision will affect so many other families with autism, although the McGuinness family might never get to see this first hand.

It’s quite powerful when you think about it like that.

Actually, they weren’t my words – they were paraphrased from comedian John Bishop who did a live set on the night.

The jokes were coming one after another, mostly at the expense of Paddy McGuinness and his one-liners from Take Me Out!

I’ve since been googling the best of these and the following had me in fits:

“Let the treacle… see the pudding!  Let the wood… see the pecker!  Let the diddly… see the squat!”

The set moved on to a random naked dating program which John Bishop observedly took us through (I obviously don’t watch enough TV – how on earth can perpetual daters be picked with their bits on show!?).

The alcohol on the night may have set in at this point 🤷‍♀️ but all I can hear is John Bishop’s scouse drawl as he annihilates a line of lady gardens.

Now that’s not where I thought I’d be when I first entered the world of autism!

Anyhoo – he delivered one line after another and the laughter was still echoing when he packed us with his final punch and gave the reason behind why we were there for the night and the word ‘autism‘ spoke a universal language.

The room fell silent.

Many of those families John Bishop had talked about; those ordinary, humble, sleep-deprived families who live on a daily basis with autism were in the room.

On our table there were three of those families alone.

Families who learn to adapt to challenges in front of them and become parents who learn to do better because their children teach them to.

Families who can feel isolated and dissociated from their friends and society.

Those that experience anger, sadness, jealousy and grief all rolled into one.

Families who often become broken because nobody understands them and the stress just consumes them.

A highlight for me was talking to Christine McGuinness and sharing our experiences about how girls with autism can present differently.

She told me about how her son presents his autism differently to her daughter’s.

She described that her girl often held her anxiety inwards – we discussed that the signs of autism perhaps were not so obvious to the outside world.

I summed up our journey in a few sentences, I didn’t want to take up her time.

It was difficult too – how do you begin to explain the lack of understanding having the profile Pathological Demand Avoidance (PDA) does to one single family?

That my baby was only five and she wanted to and then actively tried to kill herself (see here for a blogpost which covers this in more depth).

The damage that was caused from being so misunderstood and then continuously excluded?

The difference the McGuinness family will make to families like ours by bringing it out into the open because “they chose to not keep it indoors,” as John Bishop quite rightly said.  

I personally found it very emotional when Paddy McGuinness took to the stage.

He talked to the room about his wife – Christine.  About the love he truly holds for her and for the unbeliveable job she does parenting their three children:

“She’s beautiful on the outside but even more beautiful on the inside, trust me. What she does for our kids is amazing.”

She radiated on the night more than pictures can ever show.  That tells me a lot about what kind of parent she has adapted to be and what an amazing spokesperson she can be for families with autism.

It also tweaked me with sadness – the person I had started this journey with could never, and would never, feel that for the kind of mummy I had become.  We had not been able to carry along this path hand in hand.

So the night kicked off with a beautiful three-course dinner – I had to think back to Pretty Woman as there was so much cutlery I didn’t know where to start – “work from the outside in” my date for the night commanded (she’s watched it too much too!).

This was followed by a glitzy array of entertainment with some great singers, comedians and a live auction led by Paddy and Keith – which had some seriously wealthy bids.

During the evening there was an inspiring talk from Mark Lever (the CEO of the National Autistic Society) who talked about children with autism and how they deserve the right to do as well as they can.

He discussed the battles families face and he said the one thing that all families say is they wished everyone else could better understand autism.  I certainly would echo that sentiment – I feel it on a daily basis.

The night finished off with a live DJ set with Marvin Humes – who was looking very suave in his white shirt and he certainly knew how to work the crowd.

I can write about the glamour of being at an elite event, but the reality was that it was extremely difficult getting there in the first place. Anxiety was so high and my daughter was very explosive as a result – the door was barracaded in as I was trying to leave and I could predict the day ahead for my parents (who were stepping into my role as carers).

As hard as it was I tried not to panic – it just meant we got on the road a little later than planned!

But as a parent I needed it.

To be out at an event where people understood – to connect and share.  To make friends.

That was just amazing.

So as we checked out of our room we had to say goodbye to Manchester – we literally did have a ball and enjoyed everything it had to offer.  I even learnt a new trick or two – anyone heard of ‘minesweeping?’

It was good to be home again and I brought the girls some goodies back – and then I tried hard to not feel guilty about having some time away.

It might have been the kiddie bribes, or maybe that I returned with a new spring in my step, who knows, but the children actually said “Mummy should go back again!“

I think they are right.

Did you know there is an autistic profile called Pathological Demand Avoidance (PDA)? Parents often talk of having a ‘light-bulb’ moment when they stumble across the condition and find it completely fits their child.  To learn more click here.

Want to know what it’s really like being a SEN parent?  See here for orginal posts The Mum and here for Warrior where I talk about what it is like to parent a child with autism.