I’m on the Firefly Community Website today, considering why so many parents feel defensive when meeting with professionals:
A friend shared a post today about the oft-quoted, and irksome phrase ‘Special babies only come to special people’, and it put me in mind of this short post I wrote two years ago:
Platitudes and Attitude.
A note to well-meaning people.
You say: ‘Special babies only come to special people’. I know you think you mean well, I know you think you are paying me a compliment. But you are not.
You are holding that phrase out in front of you like a talisman against the evil eye: reassuring yourself that it could never happen to you, because you are ordinary, just the same as everyone else, not ‘special’ or ‘different’ like I must be. There’s nothing about you that attract that kind of luck.
Well, guess what? I’m just like everyone else too. I’ve done nothing good or bad in my life to attract God’s eye, either.
I’m just like YOU.
This little boy is my baby, I carried him in my womb, fed him at my breast and he’s one of only three people who can call me ‘Mummy’. That’s the most special thing in all the world. And the most ordinary.
Join me on the Firefly Community website today, where I’m talking about how having a child with Down’s Syndrome changed my life: http://community.fireflyfriends.com/blog/article/having-a-child-with-downs-syndrome-did-change-my-life?utm_source=blog&utm_campaign=blog%20-%20having-a-child-with-downs-syndrome-did-change-my-life&utm_medium=blog&utm_term=blog&utm_content=blog%20-%20having-a-child-with-downs-syndrome-did-change-my-life
This is one of my favourite posts from the archive; I think it demonstrates the difference between the reality experienced by the families of those with Down’s Syndrome, and the mistaken perceptions held by the public (and medical profession) of what our lives must be like.
I had another life-validating encounter in town last week. I’ve had quite a few of them over the last six-and-a-bit years. When I say life-validating, I am not mistaking the term ‘life-affirming’; what I mean is … well, I’m struggling to put it into words exactly … but what I mean is this:
I was in a shop in town with Freddie. As we walked down the aisle in one direction, an elderly couple approached from the opposite. The man was frail and stooped, leaning heavily on a walking stick. Freddie shouted out a cheery ‘hello’. Hearing him, the man looked up, then made his way over to us. His face bore a rather wistful expressioN as he ruffled Freddie’s hair, and stroked his cheek. ‘What a grand little chap,’ he said. I could have sworn there was a slight edge of emotion to his voice as he repeated, quietly: ‘a grand little chap.’
‘We had some wonderful times with our Alan,’ he continued in a faraway voice. The lady with him, who I presume was his wife, explained that ‘Alan’ was the gentleman’s brother, who had also had Down’s Syndrome. She confirmed that they had, indeed, had many wonderful times with him over the years. We chatted for a bit — the man told me about the sort of things that Alan used to ‘come out with’. The couple’s smiles were genuine, twinkling in their eyes, but they seemed, as I observed, rather wistful.
Then the lady said: ‘He’s passed away now.’
‘But he was a good age,’ said the man. ‘He’d turned sixty.’ (Two generations ago, this would have been a good age for a person with Down’s Syndrome.)
I knew then why they were so wistful — because he had brought so many good things into their lives, and they missed him.
Primark is a great place to find a bargain; but, whilst shopping for cheap shorts and tee-shirts for Freddie’s first holiday, I found something I hadn’t bargained for.
Freddie was eighteen months old. I was browsing tentatively, keeping an eye on him as he craned out of his buggy, trying to reach the nearest garments to snatch them off their hangers. ‘Hiya’ was his only word at that time, and he shouted it enthusiatically at every passer-by, hoping for a reaction. Soon enough, he got one. A lady, well into her seventies, came over and began to coo at him in a grandmotherly way. Freddie lapped it up and became utterly charming, making eyes and flirting outrageously. I joined in the conversation with some apprehension. Would she notice? I knew the words people of my mother’s generation used to describe children like Freddie, the negative preconceptions they held.
Suddenly she called out to someone I could not see, presumably a baby-loving companion: ‘Jan! There’s a little one here.’
My attention was on Freddie, I was looking down, wiping his chin. A lady’s feet apppeared in front of the buggy, a head bent over it and was treated to a luminous Freddie-smile.
‘Has he got Down’s?’ she asked
‘Yes,’ I said firmly and looked up … into a pair of distinctively up-slanted eyes. ‘Just like me,’ she exclaimed, beaming.
We talked and talked, all shopping forgotten. The conversation glowed warm with love and positivity, as did the good-natured banter between the lady and Jan.
When Jan went off to look at something that caught her eye, the lady said: ‘If everyone was more like my daughter there’d be no wars. She sees the good in everyone.’ She told me that she had another daughter also, and four grandchildren, and, to my complete astonishment said that this other daughter had always hoped to have a baby with Down’s herself, so much did she adore her sister. ‘Longed for’ were the words she used.
Primark tee-shirt — £3.50. Finding acceptance and love among the racks and rails — Priceless.
This morning, completely oblivious to the up-coming A World without Down’s Syndrome documentary, Freddie chose to wear his Christmas jumper. I told him he could choose whatever he wanted, and he chose that.
It’s not what I would have chosen. I chose a short-sleeved top and harem pants I bought for the beach. But then, Freddie is a little boy with not much meat on his bones who doesn’t care what anyone thinks of the pattern on his knitwear, and I am a woman of ‘a certain age’ with plenty of insulation. I spent the day ironing, Freddie sat playing on his iPad, or looking at books. We were both comfortable and happy with our choice.
People will choose different outfits even when experiencing the same weather, according to their individual needs and tolerances.
Freddie was fully aware that it was a Christmas jumper. He was fully aware that Christmas is in December, and today is only the 5th October. Before we decided on our clothes we had looked out of the window to see what the weather was like, and talked about how it might change later, what was usual for Autumn, and even about how it has been rather warm lately. If we’d been planning to go out, I’d have looked at the weather app on my phone. So, we each had lots of information to help us make our choice. In other words, we made an informed choice.
When someone makes an informed choice, they are much more likely to make the right choice for them.
If, however, I did not consider him able to make an appropriate choice, and considered the Christmas jumper inappropriate, then I might have hidden it at the bottom of the laundry basket from the beginning of January until the end of November. Or perhaps kept the curtains closed, told him it was usually still quite warm in October, so he should choose a t-shirt or he’d get too hot. If he still insisted on wearing it I could keep asking him if he was sure he didn’t want to choose a different jumper. But that wouldn’t have been a real choice.
A prescriptive choice is no choice at all.
One of the dictionary definitions of choice is: ‘alternative action, or possibility’. Choice, by definition, involves alternatives.
A choice in which we are steered towards, or away from, one of the alternatives is not really a choice.
Some people really do not want a Christmas jumper. When they go shopping for clothes, they choose not to buy a Christmas jumper. Others, though, are just happy to be getting a jumper, they don’t mind if it’s a Christmas jumper, they’ll absolutely love it, like Freddie loves his.
So, doctors and midwives, if a patient comes to you bearing a Christmas jumper, don’t assume they don’t really want it and arrange for it to be thrown in the bin, without asking them if that’s actually what they want. Don’t ask repeatedly: ‘Are you sure you want that jumper?’ A Christmas jumper is just as much a jumper as any other; it’s knitted, it has sleeves, a hole for the neck, and it’ll keep you warm – it’s just a bit more colourful.
A while ago I wrote about the problem Freddie has with his ankles as a result of a combination of hypotonia (low muscle tone) and hyper mobility (extreme ‘double jointedness’).
Freddie exhibits something called ‘pronation’ or, since pronation itself is a normal, but brief, phase in each footstep, I should say ‘over-pronation’. Over-pronation is where the foot rolls inwards all the time, so that a person appears to be walking on their instep; the toes, however, point outwards, at what I call the ‘ten-to-two’ position. Right, brace yourselves, here comes the science bit:
Tendons are the flexible, but inelastic, cords of strong collagen tissue that attach muscles to bones. During movement, the muscles pull on the tendons. People with DS seem to have a genetic disposition towards a defect in the gene for tendon development, leading to a greater than usual elasticity of the tendons. This means that the tendons stretch when the muscles pull on them, reducing the effectiveness of the movement produced. Pronation (or over-pronation) is one of the most common signs of this in individuals with DS.
Freddie’s degree of pronation has always been quite pronounced — from certain angles it can look as though he is almost walking on his ankles. For that reason, as soon as he started to stand the physiotherapist referred him to the orthotists so that he could be prescribed orthotic shoes: rigid, high-top boots designed to improve the position of the foot whilst they are being worn, to reduce the likelihood of injury when walking. In Freddie’s case the orthotist also prescribed special insoles too.
On this visit, the ‘foot lady’ turned out to be a ‘foot man’. After examining Freddie’s boots, and the little feet that had been in them, he told Daddy that he must make an appointment for Freddie to see the GP as soon as possible, as he needed to be referred to an Orthopaedic Consultant. The pronation is now so severe that the boots are no longer able to hold his feet in the correct position; instead, Freddie’s feet twist inside the boots and actually deform them, rigid though they are. In turn this unnatural foot position causes rotation of the internal structures of knee and hip, which could lead in time to knee problems, lower back pain and difficulty in walking. More vigorous treatment of the problem is required. He may need surgery.
This came as quite a shock, as no one has ever even hinted that this may be a possibility in the long run. Orthopaedic consultant? It’s never been mentioned before. As far as we knew boots and insoles were the be-all and end-all.
I hate the idea of putting my little man through an operation, but I hate even more the idea of him not being able to lead a full and active life due to pain and debility, so, if surgery is the only way, so be it. I’m hoping they will be able to try splints first, although I don’t much fancy the palpitation-inducing wrestling match it will take to get them on every morning. Still, it will save me having to go for a work-out.
Well, we saw the Orthopaedic Consultant during the summer holidays, and, while she didn’t rule out the possibility of surgery at some point in the future, she said that splints should be tried first, and referred us back to the Orthotics Department, who would be responsible for making and overseeing the use of them.
So today I took Freddie to have casts of his legs taken that would be used to mould the splints to fit. Knowing that I would have to keep him still while the plaster was applied and left to harden, but not knowing how long this would take, I went prepared – iPad, DVD player (incase the iPad didn’t work), books, snacks, drinks and stickers, and the buggy (to help keep him ‘restrained’).
The Orthotist we saw today was not the one who initially referred us to the Orthopaedic Consultant. He had clearly read Freddie’s notes, though. But when he said “So, I’m supposed to be casting you for splints today”, there was something in his manner that suggested this wasn’t going to happen.
He removed Freddie’s shoes and socks, and proceeded to examine his feet and ankles very thoroughly, flexing them this way and that way, and looking at them intently. Then he explained, in great depth, why, in his experience, splints were likely to cause Freddie more problems than they would solve. What he said made perfect sense, especially When he demonstrated on Freddie’s foot. I queried why no one had explained this to us before, and he said if Freddie were an exam question on the forces required to correct his foot position, and how you would achieve this, splints would be the textbook answer. But it’s all very well a surgeon saying “the foot can be moved into the correct position, so we’ll put him in splints”, when they won’t see the side effects of the splints in practice, in his case.
He explained that the tendons on the outer side of his feet were so shortened and tight when the foot was pulled into the correct position that they were protruding over the top of the bone: in his experience, he said, the rigid plastic would be pressing directly on them, and likely to cause tendonitis. In addition, a rigid splint would put such pressure on certain points of his foot that it would cause the skin to break down. He pointed out that even when he held Freddie’s foot in the soft of his hand, in the same position it would be in the splint, Freddie was unhappy; he complained that it hurt. Splints would really slow him down, make him reluctant to walk, even.
He recommended first trying device that fits inside the shoe like an insole, but offering more aggressive support, though not as harsh as the splint would be. He couldn’t guarantee anything, though he’d had good results in the past, and if it did nothing else, it would give us an idea how his kin and tendons would react to additional pressure.
Freddie was an absolute star – very patient with all the fiddling about, even when his feet had to be forced into a position that hurt. So, we’re back to Piedro boots for now, but Freddie’s not bothered, and he can run about quite happily, which is what matters.