Second Class Syndrome.

Internecine warfare would be a good way to describe the debate which rages amongst the Down’s Syndrome community over Mainstream School v. Special School. At least, it feels that way some days. It is very damaging. We risk splitting Down’s Syndrome into two classes – ‘Acceptable Down’s’ and ‘Unacceptable Down’s’. Seriously.

A friend and I were accused on a public forum, of wanting to hide all children with Down’s Syndrome away, because we have both placed our children into specialist schools. In both our cases the decision to do so was not taken lightly. It became apparent that, for the wellbeing of our children, we really had no choice. Yes, we know what the research says, but we also know very well what our children’s individual needs and tolerances are, and we always put those first and foremost. Whatever we might have originally hoped for, we had to accept that our children, in their way, were telling us that they needed something different. We did not consign our little ones to the educational bin, we did what was best for them as individuals.

 

There is one thing that we both agree on – that the best school for any child is one where their needs are met, and where they are happy, be that Mainstream, Specialist, or home schooling.

 

Many children with Down’s Syndrome thrive in Mainstream School, and when that happens it’s fantastic — good news for everyone. But there are some who do not cope in the Mainstream School environment, or who do not have a Mainstream School in their area that is willing and able to fully accommodate their needs. Mainstream does not work out for everyone. So, what are these children supposed to do for an education?

Pre-1970 local authorities were not legally obliged to provide any education for children with Down’s Syndrome, so many did not go to school at all. If you believe that children with Down’s Syndrome should never be placed in Specialist Schools, then you risk sending some children, for whom Mainstream School is not suitable, back to the pre-70s situation where there was no suitable educational provision for them. These children would have no opportunity to learn and make friends, one parent would have to give up work to stay at home with them, and quality of life would be reduced for the whole family. If you wanted to create a situation in which more people receiving a prenatal diagnosis would choose to abort, then this would be the way to go about it.

At least as the situation stands now we have options. Children with Down’s syndrome can go to Mainstream School, and for many the placement will be a success. Those for whom Mainstream does not work out for one reason or another have the option to go to a Specialist School.

Children who go to a Specialist School are not pushed in there and forgotten about – it’s not like the bad old days of the long-stay hospital. They are not hidden away. They live at home with their families in ordinary streets and neighbourhoods. They have mums, dads, brothers, sisters, friends and neighbours. They can go to Scouts, Brownies, swimming lessons, dance classes, whatever they like, alongside other kids, typical kids. They are a visible and active part of the wider community (as Specialist schools often are).

Why would anyone be against a child with Down’s going to Specialist School if they needed to? Why would anyone think that forcing a child to attend a Mainstream School, where that individual child was manifestly unhappy and unable to cope, was the best thing for them?

Is there a hierarchy of acceptability amongst people with Down’s syndrome? Are only the ones who go to Mainstream School, are ‘high functioning’, high achievers, those who can come close to the ‘typical’ norms, acceptable? Are the children who need specialist education not good enough for you? Are they not good enough to represent Down’s Syndrome? Are they ‘less than’, less worthy, less deserving of rights? Is it really YOU that wants to hide the ‘Special School children’ away, because you are afraid they will taint the fight for acceptance by being ‘unacceptable’? And what are you saying about all the children who go to Specialist School for reasons other than Down’s Syndrome? Are they less worthy, too?

If we do not accept and embrace the worth of ALL of humanity, the ‘high functioning’, ‘low functioning’, physically impaired, or those with very complex needs, then we might as well jump into bed with the eugenicists.

My child needs me to be an advocate for him as an individual, so if you think I’m ‘letting the side’ down by placing him in Specialist School, then hard cheese, old bean. My child’s needs come before your opinions. And yes, I am in the best position to know what my child’s needs are and what’s best for him. Some children with Down’s syndrome do need a specialist education. Accept it. Get over it.

For more on my view of Specialist Schools, click here:

https://kerryfender.wordpress.com/2017/07/22/2753/

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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

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CLOSE ENCOUNTERS IN PRIMARK.

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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.

AWARENESS WEEK #3

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Down’s Syndrome does not discriminate.
We are all born without prejudice. One thing I have noticed about very young children is that, presented with an unfamiliar person or situation, they seem to look for something recognisable to help them make sense of what they do not yet understand. Thus, if Freddie sees a man with white hair and beard then, no matter what the man’s skin colour, style of dress, or how many arms and legs he has, Freddie will interpret him as a ‘Grandad’. He focuses on the similarities and not the differences. Small children see the world through eyes unclouded by acquired prejudices, which is why, in thought and word, they so often cut right to the heart of the matter … and the person.
I hope Freddie will always retain this ability. What a pity so many of us lose it.

AWARENESS WEEK #2

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Around the world, each day, a number of babies will be born with Down’s Syndrome. If one of them is born to a friend or family member of yours, what should you say to them?

Congratulations. That’s what I’d recommend you say in the first instance. That’s what I wanted to hear. Just that. ‘Congratulations’ – ‘on the safe delivery of your baby’, ‘on the birth of your son/daughter’, ‘on your new family member’. in time it will become apparent what other support they need from you, for now one of the things they most need to know is that their child is accepted as a child. One of my relatives simply said my baby was beautiful (another relative piped up: ‘Of course he is, he’s one of us’. My friend’s husband, on first meeting Freddie, held out his arms saying: ‘I haven’t had a hold of him yet. Will he come to me?’ These were the interactions that were the most helpful to us at that time.

So, congratulate the new parents. If you take a gift, take exactly the same gift you would give any new baby — chances are it will be fine for them, too. And if you spot a family resemblance (and you probably will) say so.

But if you spot a resemblance to the milkman, or daddy’s best friend, maybe keep schtum about that!

With thanks to the Cheshire Down’s Syndrome Support Group for the photo at the beginning of this post.

OH, BROTHER …

‘Think what it’ll do to your children if you have a baby with Down’s.’

Those were my mother’s words when I got the results of my nuchal scan.
I think the following pictures tell you all you need to know about the relationship between Freddie and Big Sister (Big Brother is camera shy, but has become very adept at wiping noses and not reacting when Freddie jumps on him and licks his stubbly cheeks. Slowly.)
As for Granny — she thinks the sun shines out of his bum, which is just as well because his trousers are forever sliding down.

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