Twinkle Ball 2019

In April, at the end of #AutismAwareness month, back for a second year in a row was the Twinkle Ball.

It was hosted by celebrity powerhouse couple, Christine and Paddy McGuinness, at the Hilton Hotel in Manchester Deansgate.

The ball is in aid of the National Autistic Society – a charity that is significant to the McGuinness family as they have publicly talked about being a family with autism and the challenges this can often have.

I was fortunate to go the opening predecessor last year, which was stunningly put together and with outstanding entertainment – a full round up can be found here.

My sister and I arrived at the venue in the early afternoon and we had booked a room at the event. She was embarrassed in the car journey up with me – I had my hair set (well you know, when in Manchester and all that!) but when we arrived in the lobby I wasn’t the only one.

This year I was a little organised and had bought a dress in advance. It was cut price because the stitching had come loose at the back of the dress, so I bought it on the off chance I could get it fixed somewhere.

So, low and behold the person who stitched it up was none other than my seven year old autistic daughter (well that’s really a bit of an exaggeration!). Here she is practicing before she set upon my dress:

The truth is our lovely HomeStart volunteer brought her sewing machine over and they did it together, but that obviously translates in our house to only one of them getting the credit!

The stars on the night were styled and designed glamorously by an array of specialists. As an autism mama, I felt just as special in the knowledge that she had participated in the same process.

Forget the birds and the mice, my daughter is far more resourceful. Cinderella should have just rocked up to our house when she wanted to go to the ball.

It was also a useful strategy to cope with her severe separation anxiety too. I sent this picture home, as was promised to show all three children how I looked, but in particular to enable my eldest to feel more in control:

A video message came from home (my two parents were respite carers for the night) and they were able to carry on with their bedtime routine. I must admit, the worry of how things could go for my parents, was still edged at the back of my mind.

We soon were ready and the nerves had set in as we arrived on the red carpet – that’s not something us ordinary SEND parents get to do in our normal day to day lives!

We were met with a champagne reception, some retro candy floss and sweet counters, and a warm welcome from the amazing staff employed for the event before we were seated for a three course dinner.

Last year was so good, I wondered how they would be able to match the same level of enjoyment from such a precedent. But believe it or not, this year was even better – which I think was also down to the lovely company we had again on the night.

You see, we have stayed in contact with the friends we made last year from our table, so this year we organised to be seated together once again. Here is a shot of some of us as the party started:

We were gutted to have not had friends make it on the night, both who sadly couldn’t make it, but they write about their own challenges over at Happy Harry Autism and at Autism with Love.

So we sat down at our beautifully decorated table and the entertainment for the night began:

The first surprise for the night (and also the opening number) was the Stormtroopers from Britain’s Got Talent and they certainly worked up the crowd:

The entertainment line up on the night consisted of a range of acts that offered something for everyone. I particularly loved Jason Manford’s set on the night and his funny observations of a Glaswegian man attending his speed awareness course – it was just the release I needed after weeks of battle I’m having with my local authority.

We got to see James Argent and his band, (aptly named The Arg Band) who covered some great tracks and made each song seem like it was their own unique version. In fact, I was pleasantly surprised at how talented they all were and Arg was very polite to have a picture with me too:

The lovely lady at the bottom of the collage was seated on the table next to us and we finally got to meet in real life, after having so much contact on social media, it was lovely to finally meet her.

Jane, you were just as you come across online; friendly, beautiful and down to earth despite your own challenges as an autism parent.

Next up was Keith Lemon who joined Paddy McGuinness on stage to help with his live auction. Keith was rocking the drum set and he was just as funny as his appearance had been the year before. This had been another surprise act for the audience and as you would imagine, Keith Lemon certainly never disappoints!

The auction sold off an Eddie Stobart lorry (with the one off chance to have your name plastered on it!) and then tickets to see Olly Murs in concert, as well as to meet him in person. I know there were more prizes but for some reason I can’t recall them (I blame the alcohol!).

Towards the end they auctioned a personalised drive with the Stig from Top Gear, but at the last moment the producer from the show whispered into Paddy’s ear and offered the prize twice to the two largest bidders. This doubled the money, and again the same thing happened for a chance to go to Celebrity Juice, which helped the funds rocket.

So last year the Twinkle Ball raised £100,000 for the NAS, but this year it doubled to a whopping £200,000!

A huge part of that money also comes from Ok Magazine – whose generous donation for exclusive photos and interviews with the stars helped to increase the funds. The issue has just gone to print – I just got my copy this week:

Next part of the night was the raffle and one of the winners was Jane from the table next to us! There was some confusion about entering the raffle, as Paddy said to use the gold envelopes from the centre of our tables (which were actually white), so Jane had put money in there, unnamed, thinking it was just a donation envelope.

The mishap was soon recovered and they put Jane’s name on the only blank envelope, which was lucky they did, as Freddie Flintoff only went and picked it out of the bowl!

Their table erupted with excitement as Jane’s name was read out by Fleddie Flintoff and Christine McGuinness interjected “Oh, I know this lady, we talk on social media, it’s Jane Huddleston.” Now that doesn’t happen every day does it!

Jane won cufflinks and a signed Manchester United shirt, which she is already in the process of selling in order to donate the funds to her son’s special school. She told me after the event:

I was so lucky to win and on the night I got a bit emotional. If it wasn’t for my two younger boys having special, unique qualities, I wouldn’t have been at the Twinkle Ball or for so many to benefit from it, including their school, is just amazing.

That quote right there, from a SEND parent, exemplifies the humility and generosity that comes from those who face their own challenges but still think first to benefit others.

The saying about when you fall into a black hole and it is another autism parent that pulls you out is the experience I’ve had so far.

There are far too many to name who have helped me when I needed it the most, but you know what? The most powerful thing we do – we end up paying it forward.

Back to the night and there were an abundance of celebs at this event, including premiership players, idols from reality shows, comedians, ex-children’s TV presenters and bloggers. Some of whom can be spotted in the collage below, can you pick them all out?

We also got to see the winners from The Greatest Dancer, who joined us twice during the night, another act that was kept secret.

The final surprise was the door swinging open and running onto the stage was none other than Rick Astley who had literally just finished the opening act in Manchester for Take That.

The tunes were pumping and not only did Rick Astley sing some of his all time iconic tracks Never Gonna Give you up and Together forever, but he also did some great covers like George Ezra’s Shotgun and Ed Sheeran’s Shape of you.

The whole band were musically gifted and I liked how his two backing singers were introduced then given a chance to perform on lead vocals.

It was nice to see a famous singer be compassionate and respectful, rather than hogging the limelight; the comradery between all members of the band was clear to see.

Mark lever, the CEO from the National Autistic Society, took to the stage and the room fell so quiet you could hear a pin drop. His words united so many of us families. I played witness to a young couple seated in front of me, clearly distressed and being cuddled by other couples on their table.

He thanked those who are brave enough to tell their personal journeys, for the awareness they bring and for the chances they provide others with. Some of our table touched my arm and said I was one of them.

I don’t often think about blogging like that, sometimes it’s just a way to get my thoughts down, but in that moment I was overflowing with emotion and pride.

Last act for the night was Marvin Humes, who returned back to the decks for a second year in a row, sadly we were too busy dancing at this stage to take any more photos. However, that must be evidence in itself how good the set was.

So it was back to home the next day (not after stuffing ourselves with a luxurious Hilton breakfast I might add), but I returned a little refreshed and fuller.

I brought back the children some goodies, which was already anticipated and expected from their eager memories of the ball last year. I’ve included pictures from both years in the mix up below.

I have to take this moment to thank both my parents, without their help, I would never have been able to go.

A lot of planning and support was put into place to make the night happen. I guess that’s what makes it even more special.

So next year, who’s coming with me to the Twinkle Ball?!?

Did you know that there is a profile of autism called Pathological Demand Avoidance (PDA) which often many people have never heard of? To learn more, here is a quick link.

Would you like to read more about our story? Our PDA journey can be found by clicking this link.

Also, it is PDA Awareness Day on May 15th, there are many ways to celebrate or raise funds – a link to the day can be found on the PDA Society website here.

The PDA Society is a charity, run by trustees and volunteers, which receives no external funding but helps to support so many families in need. To donate directly, you can find a quick link here.