Our Lived Perspective:  Close Encounters 2.

This latest post from Our Lived Perspective is, again, another old one: and, again, it was brought to mind by a thread in which someone had shared a negative comment they had either seen or received, posted apparently by the mother of an adult with Down’s Syndrome, who seemed extremely embittered with her life, who blamed her daughter for everything that was wrong in her life. Some queried what had happened to make her so bitter. Others, however, pointed out how much harder it must have been decades ago when parents did not receive the support that is available now, and we’re simply told that their children would never learn anything and there was nothing to be done. I’m sure it must have been.

But, if the encounters I have had with the parents of (now) older adults with Down’s Syndrome are anything to go by, there have always been families who thrived, regardless, even back then in those days of bleak prognosis. You may say that those who had a negative experience would not come and talk to me, because they would not be eager to talk about it, especially to a stranger, and I would have to agree. But if most parents in the past were struggling, were miserable, and embittered, then you would hardly expect anyone from the older generation to come up and talk to me at all. And yet, I have had many such encounters – positive encounters. So, here’s another post about a random encounter I had with a parent from an older generation: once again, 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 promise you, what lady said to me about her elder daughter’s wish for a baby just like her sister is, truthfully, what she actually said. I did not make it up for emphasis. It surprised me at the time, but then, as I have learned, people are infinitely surprising:
CLOSE ENCOUNTERS IN PRIMARK.
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 almond-shaped 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.

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Our Lived Perspective: Close Encounters 1.

Today’s post from Our Lived Perspective is another old one. What brought it to mind was a thread in which someone had shared a negative comment they had either seen or received, posted apparently by the mother of an adult with Down’s Syndrome, who seemed extremely embittered with her life, who blamed her daughter for everything that was wrong in her life. Some queried what had happened to make her so bitter. Others, however, pointed out how much harder it must have been decades ago when parents did not receive the support that is available now, and we’re simply told that their children would never learn anything and there was nothing to be done. I’m sure it must have been.

But, if the encounters I have had with the parents of (now) older adults with Down’s Syndrome are anything to go by, there have always been families who thrived, regardless, even back then in those days of bleak prognosis. You may say that those who had a negative experience would not come and talk to me, because they would not be eager to talk about it, especially to a stranger, and I would have to agree. But if most parents in the past were struggling, were miserable, and embittered, then you would hardly expect anyone from the older generation to come up and talk to me at all. And yet, I have had many such encounters – positive encounters. I’d like to share a post about one particular encounter I had with an elderly gentleman, because 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. It also addresses the question ‘what about the siblings?’

MEMENTO MORI.

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 very 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. On second thoughts, perhaps this should have been entitled ‘The Loved Perspective’.

Bringing Us Together

Sharing The Lived Perspective: no 1

I am sharing a series of posts that show aspects of ‘the lived perspective’ of Down’s Syndrome and/or answer some of the points most commonly raised by negative commenters. The first post I am sharing is an old post of my own: though it is ostensibly about choice, it also addresses an aspect of choice often targeted by negative commenters – that is, ‘who pays for these women’s choices?’ These Naysayers always refer to ‘women’s’ or ‘mother’s’ choices when referring to the choice to proceed with a pregnancy in which Down’s Syndrome has been identified, and I think this says something very significant about societal attitudes. It would not be acceptable, indeed it would be seen as extremely rude and bizarre, if I were to say to the parents of a typically-developing child ‘He might not be one of the high-functioning ones, you know. What if he doesn’t pass any exams and get a good job? Who pays for your choice to have a child if in the future he becomes unemployed, or gets involved in crime and goes to prison, or becomes an addict, or chooses to smoke or drink himself into a state of decay, or if he’s one of those who goes on to develop cancer, or this condition or that one?’

And it would be very rude and bizarre indeed to ask a person such questions, which is why I never would. So why do people feel justified in asking ME very similar questions about my son? So, here we are, my post entitled ‘A Woman’s Right to Choose:

We talk about ‘a woman’s right to choose’. Eight and a half years ago I exercised my ‘woman’s right to choose’ to the fullest extent. I chose to continue with my pregnancy knowing that my child would have Down’s Syndrome.

I am a rational adult. Given accurate and balanced information (that’s another story in itself) I am perfectly capable of evaluating the data and weighing up the pros and cons of any situation or argument. I made a conscious, rational choice in the full knowledge of what I was doing.

I made my choice knowing that I would not have to sacrifice my life, because nothing feels like a sacrifice when you have made the right choice.

I made my choice knowing that my son would not be a burden to me; he would be my child. Yes, I would have to look after him for longer, and he would always need more help than most, but he would bring me just as much joy, and love, and pride, as his brother and sister.

I made my choice in the knowledge that my son need not be a burden to you, the taxpayer, when he grows up (let’s face it, that’s what you mean when you talk about a burden on ‘the state’ or ‘the NHS’). We, his parents, are rational adults – we would plan ahead for his future, for when we are no longer here. I made my choice in the knowledge that my family also pays its share of tax (we don’t begrudge extra care to others who need more than we do, not even those who have smoked, drunk, or drugged themselves into an early decline – everyone has their frailties. And while we’re talking about cost to the state, let’s consider how few, if any, adults with Down’s Syndrome will end up in prison – it’s a valid point).

I made my choice aware that my life would not perfect: it never has been, but then, whose is? Life does not have to be perfect to be happy. When you make the choice that is right for you, it is much easier to find moments of contentment day-to-day: this is the root of happiness.

So, if you see me and my son hand-in-hand in the supermarket or at the park, please accept that this is what a ‘woman’s right to choose’ sometimes looks like.

Because a ‘choice’ where only one alternative is deemed acceptable, is no choice at all.

Bringing Us Together

Homemade (With Love, Felt Pens, and Desperation).

Here’s another of our ‘Heath Robinson’ handmade (in other words, crappy) resources. I wanted to demonstrate to Freddie, in visual form, exactly how long the school summer holidays are, and to reinforce the idea that he will be going back to school in September. I wish I had thought of this at the beginning of the year, because the second week of July is a little late to go looking for an academic year planner, at least in my local shops. I know there are lots of great printable resources available online, but our printer no longer actually prints. The light still comes on when you plug it in, though, so as far as Daddy is concerned it isn’t broken. Anyway, when you factor in the cost of ink cartridges, and paper, and electricity, it’s much more cost-effective to send your spouse down to the shops on foot to buy some pens, so she can draw things by hand on the free cardboard that you get with every packet of cereal. Another advantage of wives is that you can run them on cheap baked beans from Aldi. Indeed, they are the ultimate sustainable solution: organic, low emissions and fully biodegradable, a bit like cart horses used to be.


I didn’t have long to knock this little gem together, and wasn’t sure how best to approach the task. I colour-coded the days: blue for school days, red for weekends, and yellow for school holidays. By the time I was finished I was beginning to think that I’d made it over complicated, but there was no time left to try again. I attempted to explain it to Freddie when he came in from school, but he immediately demolished the moveable green dot I’d made to mark which day we’re on, and cast the chart into the (metaphorical) weeds.

Later on I found the dot stuck to my shoe, so I stuck it back on the chart and Blu-tacked the whole thing to Freddie’s wardrobe door thinking ‘We’ll see how we go’.

Fast forward to Saturday morning and the first thing Freddie does when he gets out of bed is to move the green dot from the Friday to the (correct) Saturday, then parks himself in front of the chart and studies it for a good few minutes. Perhaps he will ‘get it’ after all. Always presume competence. Actually, while it’s perfectly legit to presume competence in one’s children, you might want to exercise a little more caution when it comes to professionals 😉.

End Of Year Thoughts

Another school year has come to an end. Over the past couple of weeks my newsfeed has been full of posts about Sports Days, leavers’ assemblies and prom nights, and end-of-year reports and concerts. Bittersweet moments have been shared, of children ‘growing up too quickly’ as they pass through the milestone moments of their education, moving onwards from one stage to the next, inexorably towards adulthood. A good many of these posts have shown children with additional needs and disabilities fully included and participating in mainstream school life. Inclusion is the ideal – where the school is willing and able to fully meet a child’s needs, and where the child is able, with appropriate support, to cope in a mainstream school environment, it benefits the whole school community, and society, as it teaches tolerance, and ‘normalises’ disability by allowing non-disabled and disabled children to interact as peers, on a day-to-day basis. However, for some children it is not the best option.

There are many children with additional needs who struggle in the mainstream school environment. There are many mainstream schools who struggle to meet the needs of SEND pupils. Often the situation is an unhappy mix of the two. For the parents of children in this unenviable position, the suggestion that their child’s needs would be better met in a Special, or SEND, school may come as a crushing blow. And no wonder – inclusion in mainstream is held up as the gold standard; having your child end up in a SEND school is seen as Failure.

Parents often express feelings of grief, guilt, despair, or anger when it becomes apparent that their childs needs can really only be met at a Special school, and some refuse point-blank to even consider it, preferring instead the idea of fighting to keep their child in a school that is manifestly unsuitable. I believe the reason for this is because the common perception is that they will be somehow selling their child short, or letting them down, if they choose Special school. No parent wants to do that.

This is a very sad situation for everyone involved. 

I can tell you from personal experience that SEND school is not the bottom-of-the-barrel option. It is not about failure, or giving up on children, or just ‘babysitting’ them for the day, and it is not about segregating disabled children away from Mainstream. Special Education, properly done, is about appropriate and accessible education. 

It is about acknowledging and accepting difference, and the fact that different people need different things. Inclsuion in Mainstream is all very well when it works: when the school can meet the child’s needs, and the child can cope in a mainstream environment, but this does not always happen. Of course there are good and not-so-good schools in both sectors, but Mainstream and SEND are, in a sense, two different animals, and one is not less than the other.

My own son goes to a Special School. Freddie is in a class of ten pupils and three staff (plus one extra to assist a visually-impaired pupil). He gets a much bigger share of attention than he would in a class of thirty. Yes, in mainstream he would have one-to-one, but there is no guarantee that his one-to-one would have any special training or knowledge. With a pupil/staff ratio of roughly 3:1 he does at least have to learn to stand on his own two feet a bit, but in a very safe environment.

All the staff in Freddie’s school are specialists in SEND and are aware that our children may need to learn and be taught in different ways. They seem to be able to be much more flexible and creative in the way they work than mainstream would allow, it means they can be very responsive to individual need and circumstance 

I don’t have to fight for anything, and I don’t have to be constantly going into school to sort out problems. The expertise we need is all in place.

All the staff have a great deal of experience in dealing with challenging behaviours in a calm and constructive manner. All the staff know how to discipline children with additional needs effectively, and they have certain expectations of the children, and know how to communicate them in a way the children can understand.

Acheivement is measured on an individual level at Freddie’s school; each child is encouraged to improve upon their personal best, and when they do so this is celebrated, no matter what others in the class have done. This is only fair because, as the school recognises, their children come with widely differing needs and abilities.

Freddie certainly isn’t just being ‘babysat’ for the day. And he doesn’t spend the whole day just singing silly songs and doing bits of craft. Yes, art and craft are on the curriculum, but so is literacy and numeracy, or English and Maths as he calls them now that he is in Year 3. They do Phonics. They do topic work on Science subjects, History and Geography. They do use songs as a learning tool sometimes, because it helps the children to remember things. I still sing a little rhyme I learned in school when I want to remember which months only have 30 days in them. 

They do cover life skills and skills for independence, which has taken some of the pressure off me at home. In fact I’ve learned a lot of helpful tips from the teachers which I’ve been able to use at home. Consistency of approach between home and school has improved Freddie’s behaviour. 

I’m certain he’s getting far more out of the curriculum at Special school, because it’s differentiated to meet his needs, than he would at Mainstream school. To insist that he be taught exactly the same as typically developing pupils would be to deny his difficulties, and, therefore, limit his opportunity for learning. Many of the things that pupils do in Mainstream can be adapted for Special School. In September Freddie will be doing Forest School. In another year or two he will get to go on a residential, if I can bear to let him!

So, if you’re one of those parents who’s feeling gutted because Mainstream school is not working out for your child, please believe me when I say this isn’t the end of your child’s education, and you’re certainly not failing them, letting them down, or selling them short by sending them to a (good) Special School. You might just be unlocking a door for them.

What A Star.

Freddie likes to follow a predictable routine. Familiarity is comforting to many of us, and in Freddie’s case, I think it also helps him to make sense of things – if THIS is happening now, then THAT will probably be happening next. This is probably the reason why he can be resistant to a sudden change of plan. Every school day the minibus comes to the end of the drive to collect Freddie for school. But today the bus was rather late. Then I had a phone call from one of the chaperones to say that the bus had been stuck for ten minutes on the main road that leads to our little estate, behind the huge vehicles of a maintenance crew who were resurfacing the road; could I possibly walk Freddie down to the main road? In the background I could hear that some of the other children were getting distressed – they like their predictable routines, too. I told her I would, but it might take me some time to coax him to do something different. Then I took a deep breath and …


Freddie was an absolute star. I explained the road was being mended, which meant the bus couldn’t drive over it to get to our house, so we’d have to walk to meet the bus on the main road. He was playing a game on my phone while he waited for the bus – his reward for completing all the steps on his morning routine. Usually he’s allowed to carry the phone to the bus at the end of the drive, and gives it back to me before going up the step. I told him we couldn’t walk down the street playing a game, we’d have to leave the phone behind, and straight away he let me have it back. He took my hand and walked nicely all the way off the estate; no refusals, no pulling his hand out of mine, no flop-and-drop. He jumped up onto the bus and went straight to his seat, and the bus was able to turn around and continue on its way again )much to the relief of everyone aboard).

And it was a lovely sunny morning too. 

Can’t be bad 😁

My Life As It Was Meant To Be: A Firefly Community post.

This post, on Firefly Community, goes some way, perhaps, to explaining why I found it relatively easy to decide to go ahead with a pregnancy in which I knew I had a 1-in-12 chance of having a baby with Down’s Syndrome; and why I was able to face his diagnosis with less fear than most:

http://community.fireflyfriends.com/blog/article/special-needs-parenting-my-life-as-it-was-meant-to-be