Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


6 Comments

Handbags and gladrags

Once upon a time a woman decided she wanted a handbag. Her friends all had handbags and she decided the time was right for her to get one too.

So she went to the handbag shop and asked for a new handbag.

The shopkeeper told the woman there were two types of handbag to choose from. Blue or pink. The woman said she really didn’t mind what colour handbag she had, so long as it was a sturdy one, without any flaws in the leather.

The shopkeeper smiled, handed her a blue handbag and congratulated her on her new acquisition. The woman took her lovely new blue bag outside into the big wide world to meet her friends and compare it with their handbags. The woman was very happy with her choice.

A while later another woman entered the handbag shop and excitedly asked for a new handbag too. This time the shopkeeper handed the woman a pink one. She was very pleased as she had secretly hoped that it would be pink but hadn’t dared to ask, although, of course, she would have been just as happy with a blue one.

The shopkeeper continued to do a roaring trade in handbags and most people were very happy with their purchases.

One day, a young woman came into the store looking for her first handbag. Nervously she looked around at the choice. Blue or pink (neutral was also being introduced as there was now a growing demand for this to be an option.)

The shopkeeper handed her a bag. It was a beautiful bag. Vibrant pink. It stood out from all the others. However, the woman looked at it and shook her head.

 “I don’t want that one,” she said, fearfully.

Why not?” Asked the shopkeeper.

“It’s different. It won’t work properly.”

The shopkeeper nodded in agreement.

“Well, it’s entirely your choice.” He said, failing to tell her of the beautiful bag’s potential. Of all it could be to her. Failing to help her see its enormous possibilities whilst not denying its limitations.

Failing her.

“No. It’s flawed. It’s not fit for purpose”. Her mind was made up. “I don’t want one that stands out. I want one that looks the same as everyone else’s. Take it away. I’ll come back when you have a better one in stock.

“Of course,” said the shopkeeper, “no problem.”

The woman left, sad, hurting, empty handed. She had made her choice. It wasn’t easy but she felt it had to be done.

Sometime later, another woman entered the handbag shop, accompanied by her husband. He did all the talking.

“We want a handbag.” He said abruptly. “It must be a blue one.”

 The shopkeeper looked behind the counter.

“Sir, we only have pink ones today. I cannot guarantee you a blue one. Here, this is your handbag.”

The shopkeeper showed the man a beautiful pink shiny handbag and then handed it to the woman. The woman’s eyes lit up for a second. Then she lowered them. She knew it would not do.

“It is not blue,” said the man. “It will not do.”

He took the bag from his wife and handed it back to the shopkeeper.

 “Take it away immediately. We will return when you have a blue one in stock.”

And with that, the man marched out of the shop followed by his wife. She had not uttered a word.

The woman had no choice.

Finally, another woman entered the handbag shop. It was getting late and she was in a hurry. She didn’t have time to really look at the handbag she had been given until she got out of the shop. She immediately noticed it was different to all the other handbags she had seen. Very different – some would even call it flawed. And, although at first shocked by the handbag, quickly the woman began to love it and wanted to keep it. It was her handbag.

However, when she showed the handbag to her partner he did not share her love. So much so, he could not live with this particular handbag and demanded that the woman give it away.

For whatever reasons, the woman felt she had no choice but to give in to his demands. Thankfully, a couple who had been unable to even get into the handbag shop were immediately found to give the handbag a new home. They were delighted. They would look after the handbag from now on.*

But this was not the woman’s choice.

The End

Someone said recently that having a baby is becoming more and more like choosing a handbag. Only the healthiest, fittest and definitely NOT disabled will do. Even gender is now a deciding factor and not just in other cultures or countries but here in the UK.

The right to choose is upheld as the greatest victory for women’s rights. And yet so many women do not even have that choice open to them. We are kidding ourselves if we think they do.

*The last example in the story above I have drawn on from meeting a beautiful baby very recently who had been put up for adoption. The baby had a non life-threatening condition. The mother wanted to keep the baby, the father didn’t. The father won. Whose choice was that?

Choice MUST be informed…..that is something those of us in the Down’s syndrome community are fighting for with the introduction of the new prenatal test that is set to be rolled out across the UK. Yet what is it that we are actually choosing? A handbag? Or a baby. Disposable goods or a human life?

Choice (informed or otherwise) is not all it’s cracked up to be. Just ask the women who don’t have it – though they probably would be too afraid to admit it. Choice has its limitations but possibilities are endless.

Women deserve better than a trip to a retail park. And so do their offspring.


4 Comments

Just do it

Just do it.

Or so we were told by a famous sports company back in the day. Whatever ‘it’ was.

If there’s one lesson I’ve learnt since having child with additional needs it’s that we don’t just do anything.

There’s the big stuff. Learning to sit, crawl, stand, walk, talk, and in Hazel’s case especially, learning to feed. We follow a different time-scale to most.

I have an early, painful memory of being handed Hazel’s little red book by a well -meaning nurse, only for her to return shortly afterwards and abruptly pull out the growth charts, replacing them with a special set – exclusively for children with Down’s syndrome.

“You won’t be needing those, you need these.”

My already fragile and hurt feelings were then compounded by a visit from the audiologist who was doing the rounds in the tiny NICU room we were in. I overheard her speech as she went from cot to cot, parent to parent, explaining the routine hearing test their babies would soon be having and how they would probably have nothing to worry about.

Then she came to me.

The tilt of her head did nothing to prepare me for her words. Delivered with a gentle brutality as to send me reeling.

“Of course, your baby might not pass this test”.

I wasn’t prepared. I wasn’t ready to be different.

Deep deep breaths.

Then there’s the smaller stuff that having a child with complex needs means…so that we don’t “just do it”…

Going to the park. Getting a babysitter and going out for an evening. We need a nurse for that.

Dropping in on friends or taking a day trip. The cinema, theatre or pantomime, zoos, farm parks, play areas. Even a simple picnic in the sunshine. Concerns about sensory issues and how Hazel will react.  Changing facilities (or lack of them); all these factors add up and quite honestly often put us off setting foot outside out home.

Hazel’s feeding equipment, routines and reactions make these things harder. Not impossible, but harder.

Even the things we do “do” take far more planning than we would like.

Going to Church, a trip round the supermarket, a children’s party, lunch with friends or family.

Sometimes it’s easier not to even attempt these things.

And, if I could change this, I would. In a flash. Of course I would. Who wouldn’t?

The truth is we can do many of these things, but the word “just” has to be firmly kicked into the long grass.

And that is absolutely ok.

When you “just do” something you may miss the complexities of how it is done. You may miss the joys of achieving the seemingly impossible. You may take it for granted.

But, when you finally “do it”, do the very thing that is so hard for you to do, however easy it might be for others, then the sense of achievement is often beyond measure. The appreciation for what might be a simple pleasure is second to none.

It’s in those moments that my heart sings.

Today held one such moment.

Hazel doesn’t eat. She is 100% tube fed.

We try. We try hard to help her to learn. To help her to want to eat. We play, we have fun with food. We get messy.

In school it’s called “Food is fun”.

But it is hard. So so hard.

 Hard when the walls, ceiling and anyone else sitting at the table is covered in whatever food Hazel has been “playing but not eating” with. Today it was orange. The colour, that is.

Pureed carrot and sweet potato. The clean-up took three times as long as the ‘meal’. It even reached the television which was quite a feat considering that’s in another room entirely.

Ah but surely this is quite usual for a child learning to eat, you may think. It’s a phase.

Yes.  It just doesn’t usually last four years and counting.

We clean up, with a heavy heart and an unspoken envy of families where children just pick up a spoon and eat; or who can go off out into the sun with a picnic whenever the mood takes them.

But not today.

Today my heart sang.

It sang at the smiles, laughter and joy Hazel exuded in her state of orangeyness. It sang as she giggled throughout lunchtime, happy to be with us at the table, enjoying the moment and being part of our family. And it sang because, in all the laughter, Hazel actually took two spoonfuls of the vegetable medley in her mouth!

Food really is fun!

So we will continue to embrace the mess. Savouring, relishing in and enjoying the milestones, or even just the stepping stones along the way.

Golden moments in time that are hard fought for.

One day we will picnic together, all four of us.

But I don’t really ever want to “just do” anything.

Downright Joy 2


6 Comments

Brush with joy!

A trip to the dentist can be stressful for most people.

A trip to the dentist for a child is something that takes careful planning – until they get used to it at least. With my eldest child this meant watching a YouTube episode of Tots TV – the one where they go to the dentist – as well as observing mummy’s teeth being scrutinised by our lovely dentist before her turn to sit in the chair.

” It’s very dirty inside mummy’s mouth” being the only observation my 5 year old made – and I was in no position to argue, mouth wide open, mid-scale and polish.

And, a trip to the dentist for a child with additional needs can be a different experience altogether.  Powers of reasoning are nil or virtually non-existent. The best that can be hoped for, on the first few visits, is that the child gets used to the clinic. Actually, this is the easy part, Hazel loves visiting clinics and hospitals. She hasn’t had much choice in the matter and often comes away with more than she went in – usually a teddy or a toy if it’s been particularly traumatic, a sticker if less so.

Then there’s the chair, the shiny bright light and the dentist. Oh and the dental nurse. However friendly they may be, it’s still an enormous ask for Hazel to let them anywhere near her mouth. As a child who is 100% tube fed, Hazel has more reasons than most not to open her mouth. Oral feeding is a huge challenge for her and us, and, although we believe she will learn to eat eventually, it’s one step at a time. Hazel knows all too well that if something is supposed to go in her mouth (i.e. food, drink or a toothbrush) then it is to be avoided at all costs! Paint, glue or sand, however, can be consumed in vast quantities. At least, that’s what Hazel thinks. When it comes to feeding, or in this case a dental examination, you may smile all you like at her, play peekaboo or whatever. She ain’t going to open wide for anyone!

Until today.

All credit to the dental team we saw. Not our family dentist, but an NHS clinic that specialises in treating patients with additional needs. And boy, did their training pay off!

It started well. Smiles and “hellos” all round from Hazel to everyone and anyone in the waiting room – as well as to the staff standing in doorways as she trundled along in her wheelchair to the examination room.

The dentist and her nurse got the joy treatment too. The dentist and Hazel soon made friends….the inflated surgical glove trick was hilarious.

Then came the stand-off.

No amount of “tickle-tickle” or “look at the pretty light” would cut it. Hazel shut up shop. Jaws clamped together. Prising them open? A foolish notion that was never going to be an option. I valued my fingers as did the dentist.

We changed position. Taking Hazel out of her wheelchair and sitting her on my lap as I lay back in the dreaded chair. Hazel relaxed a little, presumably thinking her ordeal was over and we were merely getting comfortable. She began to “chatter” in her own way. Not many recognisable words to the untrained ear but I knew it was a song she loved. Her most favourite song in the world. Ever.

Happy Birthday.

The dentist and her nurse took their cue.  And, as if on repeat, they sang Happy Birthday to Hazel. Over and over again. And Hazel lay on top of me virtually still (though the arm lock I had her in, not to mention the leg restraint from the smiley nurse may have had something to do with it!)

Mesmerised by their harmonious singing.

The dentist saw all she needed to. Though I confess I felt a little stab of guilt that it wasn’t actually Hazel’s birthday and that I might just be adding to her confusion by using the song out of context. However, the end justified the means.

Advice and Disney sticker dispensed and we were on our way. The dentist recording in her notes that Happy Birthday might well do the trick again next time.

And, as we left, the dentist and her nurse told us they’d had a challenging day in the land of special needs dentistry, but that Hazel had been a delight to finish it with. Smiles all round.

Just another day in the life of our family and not without its challenges as she has been unwell but Hazel still manages to throw a little joy bomb* into the lives of the people she meets.

 

*Joy bomb – a term I have unashamedly stolen from another mum of a child with DS. If ever there was an expression to sum Hazel up it’s this one!