You already know social media and family gatherings will be all about little Jane who had a distinction in maths, or young Brian who scored the most goals for the school football team this year…but what about all those children sitting through the ceremony, year after year longing for their name to be called yet never hearing it.

What about the children who have found the school year exhausting, who have struggled to master ten new spelling words a month and who have needed support every single term?

What about the child whose parents have separated this year meaning she has had huge difficulty focusing and has slipped down the ability chart as a result?

What about the child for whom just getting through a single day with the noise, bright lights and confusing smells is a huge achievement?

What about the child whose health issues mean that getting to school is an achievement in itself?

What about the children like mine? 

Each year they become more and more disappointed.

Each year their self-worth and excitement gets less.

They will never be top of the class, or excel at sports or get the starring role in the school play. 

More and more children with special needs are being educated in mainstream schools.

It has huge advantages but at this time of year of competition and recognising achievement it can be so demoralising for a child who has tried their best day in and day out and still never hears their name at the award ceremony. 

I wish I could speak to every one of those children.

I wish could hug every one of their parents.

I know the heartache of seeing your child feel left out.

I know how hard it can be to clap and cheer every achievement announced, knowing your child can never compete or be in for a chance of winning something.

Stay strong children. Stay strong parents.

In cheering on others and noting their success you are developing character, and if that was ever measured you would both win without a doubt. 

If there were awards for perseverance, for strength, tenacity and determination YOU would be the winner. If there were awards for fighting spirit, purity and trying they would be calling out your name loudly.

One day the world will realise stars are much more that the best achievers. 

Until that day, if your name is never called at that award ceremony stay strong.

Your self-worth is not measured by certificates. Your importance is not measured by how many people cheer. 

You are important. You are worthy and you are special. You are the best at being you and that is better than any award that any school can offer.

I’m not sure if you can hear it little one, but I am cheering you on!

Keep up the great work! 

Throughout her life my mother has been a Carer.

She first took on this role in her early teens when she cared for her stepfather who was terminally ill, while her mother went out to work to put food on the table (the NHS and the welfare state had barely got started at the time).

After raising me, she cared for her own mother, then her mother-in-law, and then her father-in-law in succession.

Now she cares for my stepfather who had a stroke some three years ago.

When I fell pregnant with my third child, and discovered the chances that the baby would have Down ’s syndrome were one-in-twelve, she was devastated.

The one thing she didn’t want for me was the life of a Carer.

After I refused an amino she didn’t speak to me for six weeks, so adamant was she that my life would not be worth living if I had a child with Down’s.

She thought it the height of self-destructive folly to continue blindly, in the hope that it was just a false alarm and everything would turn out all right.

Everything is all right.

Yes, it’s true that my son Freddie does have Down’s Syndrome, but – and this is a secret, so don’t tell anyone else on here or they’ll think I’m a big fraud when I write about disability issues – the truth is; I’m not a Carer.

That may not be true for everyone who has a child with DS, but it is true for me, and I’d bet you a pound to a penny that it’s true for some other families as well.

You see, Freddie is healthy and able-bodied, he just has a developmental delay and some learning and communication difficulties.

‘Extreme Parenting’, more accurately describes what I have to do for Freddie.

Each stage of development has come later and lasted longer, but he consistently progresses in the right direction.

I had a ‘baby’ for three years, and a ‘toddler’ for four.

Yes, we changed nappies for six years, but many children have the odd accident up to this age.

Now, at seven and a half, Freddie is reliably clean and dry in the day; at this stage we just have to remind him to go to the toilet every so often (there are so many, much more interesting things to do), and administer a few spoonfuls of medicine to keep on top of his tendency to constipation.

He wears a pull-up at night, because (lucky us) he sleeps right through, but some mornings he is dry when he wakes, so it looks likely we’ll get there in the end. Around one-in-four typical children wet the bed up to the age of about ten, anyway.

Yes, I spent a sleepless night on sick-bed duty last Saturday, administering medication and making warm drinks..

not for Freddie – who snored softly under his quilt the whole time – but for his dad, who had a nasty flare-up in his asthma.

I stayed alert the rest of the night, ears pricked for the sound of a deterioration in his breathing – severe asthma can rob you of the power of speech just when you most need to ask for help.

Many times when my daughter was small I lay beside her in bed, listening for the same, waking her every couple of hours, on doctor’s orders, to give her a dose of her inhaler.

I would much rather wipe a loved one’s bum from time to time than listen to them wheezing and gasping with such difficulty that I’m afraid they might stop breathing in front of me.

Yes, I have to deal with some challenging behaviour.

Partly this is due to developmental delay – patience helps a great deal here, remembering that Freddie is in some ways cognitively and emotionally younger than his chronological age.

Partly it’s due to frustration caused by learning, and especially communication, difficulties, in which case strategies like the use of Makaton have helped.

Partly, I have to say, it’s also due to personality.

My mother found me a very challenging child; luckily there’s no prenatal test for Outright-Awkward-Sod Syndrome, otherwise I might not be here.

Freddie has no major physical or mobility problems, so we don’t use any special equipment.

The only medication he is on is a mild laxative, which he slurps off a spoon.

So, in addition to only having to do a bit of, ‘Extreme Parenting’, I also still get to experience the milestones and the fun things that all mums and dads look forward to: hearing him read aloud, seeing him learn to write, to swim, and to ride a bike.

We go out to restaurants, the theatre, the zoo, and to museums.

We go on holiday. He kicks his football over the fence into the neighbour’s garden.

This is the truth of Down’s Syndrome for me.

You see, my mother’s fears were groundless.

You can’t blame her, such were the negative messages she’d absorbed about the condition, messages she tried to pass on to me.

How many others, hearing the, ‘received wisdom’, about Down’s, have been made to feel unequal to raising such a child, even though they wanted children?

I’ve been thinking a lot about loss this past week. 

Sadly, my mother-in-law passed away after a life-long battle with cancer.

The disease came and went and came and went for the span of over forty years, during which time she led life on her terms, busying herself with family, friends, and community service, and enjoying travels all over the world with my father in law.  No matter how expected, the loss is felt no less.

Five years ago, my own mother who had lived in Oregon for two decades, moved back to Southern California to be near her three grandchildren.

She and Cole are thick as thieves.

For the past five years we’ve spent at least one weekend day with her doing errands, having lunch, and goofing around.

It’s the highlight of Cole’s weekend. He adores her more than anyone in his life.

But this past weekend, my mother moved back to Oregon. 

For different reasons, both losses will be long felt. 

Whilst my husband kindly drove the moving truck up to Oregon for my mom, Cole and I spent a day watching all of the Working Title movies, so we could unabashedly have a good cry, without having to further discuss the sadness’s of the week.

By the time we came to (in my humble opinion) the best of them, Four Weddings and a Funeral, we’d laughed and sobbed our way through Definitely, Maybe, Notting Hill and Love Actually.

It was a cathartic day to say the least.

Cole, being non-verbal, seemed to relish the opportunity to release some of his emotions and we talked some about both of his dear grandmothers and about what I could do to help him cope with both the permanent loss of one and the spatial loss of the other. 

Even with the ability to use a voice output device (Cole uses a Tobii eye gaze device) and a vast array of facial expressions, gestures, and sounds, it’s difficult for a non-verbal young teen to articulate the breaking or distress of his heart adequately.

Which, of course, breaks my own fragile heart. 

In the eye of these life-changing events this past week, sits me.  Me, trying to make sure my husband is okay and supported in his tremendous loss, and me, trying to make sure my son transitions through these losses in one piece. 

There’s no room in this for me to break down and let it all hang out, unless it’s under the guise of teary eyes spilled at watching Hugh Grant’s, William standing up Hen at their wedding, opting to risk it all for love.