On Life and Friendship for a SEND Parent

It's a funny old thing life and friendship 

Life and friendship: Quality over quantity 

Unexpected news that shocks you to your core
Your world is over
Time is frozen
Or is it?

People are afraid. To approach. To speak. To congratulate
But here is the beauty of this beast
The wheat has sorted itself from the chaff
The true friends have stayed, shone forth

Those who don't, can't, ever get it 
Will be blown on the wind
Embarrassed, awkward
Focussed on superficialities that you now see through a crystal clear lens

Your heart will bleed
Anger and hurt will fill your mind
But the fog will clear
And you will know the freedom

You are the lucky one
No niceties to endure no small talk, 
For there is no time
And you are better off

Your child is the looking glass, 
the answer
the litmus
a sieve

You are distant sometimes, private, hidden
To all but a core of the most precious friends
Soulmates and aides of quality over quantity

What more could anyone ask?



Written through the tears after reading the nominations received for Downs Side Up in the National Diversity Awards.
Thank you to those that have stuck with our family through thick and thin, to those who have supported, bolstered, understood, held us afloat and sometimes glued us back together.

Happy Birthday, Unbirthday and a Blogiversary

November is a month of birthdays, blogiversaries and unbirthdays, in our house. 

They are markers in time, vantage points from which to assess our challenges and achievements over the previous 12 months.

Happy Birthday, Unbirthday and Blogiversary 

I was pondering my own forthcoming special day, when I came across a beautiful poem by John Lavan called An Age over on his blog Poems from Reality. 

Downs Side Up meet The Futures Rosie

I could write for hours about what happened when the two divas met for the second time... but I'll let the pictures speak the words. I bring you Natty and Rosie:

Read The Futures Rosie blog here. 

The Significance of the Birthday Party Invite

The Party Invitation

Children's birthday parties...

"Noise.  Other people's kids.  Sky high little ones on a sugar-fuelled trajectory headed for mahem and destruction.  A couple of hours eaten into your precious family weekend.  Small talk with other parents you barely know.  All those scary germs lurking in the ball pit that are bound to make your child ill.  The stress of hoping your child behaves better than the worst of them."

That may be what some people think when their children are invited to a classmate's birthday party.  Certainly when they are before the age of the 'drop and pick up later' phase.

Here's our story...

Last week, when I dropped Natty at school, her friend Bella bounced up to me, beaming from ear to ear and proudly holding a large pink envelope aloft.  On the front, it simply said 'Natty', written in her own 5 year old hand.  Natty and I took the envelope and I asked what it was. Bella replied, "It's a birthday invitation."  From what I recall, there was much whooping and hugging all round.

You see, Natty attends mainstream school. And Bella is a gorgeous, bright, funny, confident, 'typically developing' girl in her class.

Immediately the birthday invite became a symbol to me.

Today we attended the party, and what a fabulous party it was. There were games and a disco and a soft play bit and a buffet Nigella would be proud of, tears, tantrums, party bags and even a glass of bubbles for the mums! 

But this is not the overriding, enduring image of the day for me.

I am sitting here with an picture in my head of Natty right at the front, joining in the game of musical statues.  Of her climbing through the soft play area without me on her tail.  Of her going up to the buffet with a plate in one hand and her friend Fin holding the other (he also happens not to have Down's Syndrome).  Of her saying thank you to the parents of her host before she left.

What I saw today was a little girl who was not completely identical to her peers, perhaps because of her speech, perhaps because she is head and shoulders shorter than them, but a little girl who took part in all the same activities and felt part of the group.  Not for one minute did I observe an outsider.  Not for one minute did I see her stand apart. And not for one minute did I see her classmates treat her with anything but love and respect.

I did observe that other little 5 year olds instinctively understand that she needs a little more time, or help, or translation.  But to them, this was just part of the party, part of daily life with Natty in their midst.

And suddenly I realised at once, that the full power of inclusion is a 2-way thing.  It's not just about our kids with special needs being accepted.  It's about a new generation growing up with others who are 'different' alongside them, learning acceptance.  It about all of us looking out for each other.  Our children give back something too. Every time someone cried today, Natty's radar was activated and she was by their side in seconds, comforting.  And they welcomed, wanted that comfort.

So, for me that party invite was a symbol of true inclusion.  I hope they never stop coming...


Read about how Natty celebrated her own 6th birthday with a party here in Natty's 6th Birthday.

Watch Natty's Mum tell friends and family what to say when a baby is born with a disability, here: 

Natty's 6th Birthday

Children's birthdays are wonderful yet emotionally complex markers of time for me.
I've decided therefore to do two posts about Natty's 6th birthday, and this is the light-hearted one about parties, presents, jelly, tutus, Pass the Parcel, friends and family....

This time last year when Natty was 5, her Dad was unfortunately working away. I did a simple party at home but it's hard to take pics and cook and organise games and stop kids crayoning on your walls and smile and enjoy all at the same time. It was a lovely day, but passed me by in a slight haze. Read about it here in An Unexceptionally Exceptional Birthday.

This year was very different. We had celebrations over 2 days. A mini tea party with just our immediate family on the day and a party for school friends at the weekend.

Mini celebration on Natty's birthday with simple cake number 1

Not only was Daddy Downs Side Up here, but Natty's big brother and his wife were visiting too. We had an army of help and it meant we could all enjoy the tiny details of the day.

A very happy birthday girl

For the first time I think Natty understood that her birthday was coming. She got excited and chatted about the party both before and after the event. I'm so happy that she clearly loved every minute of it. Pictures speak louder than words, so here they are...

Cheeky Monkey!

The birthday girl donned her favourite tutu and big sister  Mia set up a facepainting station for all the guests, starting with hearts for Natty.

Natty then then painted some of her friends' faces before decorating her big brother and turning him onto a rosy-cheeked elf!

I adore the look of concentration and love here

No party would be complete without a selection of games: Pass the Parcel, Pin the Purse on the Mermaid, (please excuse my feeble art skills!), and every parent's favourite Sleeping Fish (there was a vague swimming theme), as well as colouring in a little thing that shrinks in the oven, doing your own puppet show and decorating your own party bag.

Pin the Purse on the Mermaid, Pass the Parcel and Puppet Show

The children were all beautifully behaved and worked together, instinctively allowing for each others differences; explaining, calming, comforting, dancing, laughing, hugging, cheering up, consoling, asking for help if necessary. Wonderful to see, and exactly how it should be.

When it was time, they sat down for tea. I decided to swap traditional party food, which is always more time consuming and costly than you think to prepare, for a starter of cubes of cheese, pineapple and grapes on sticks, then a bowl of pasta and  blitzed homemade veg and tomato sauce (so easy to knock up in advance) finished with mini trifles in cups (fruit and sponge with jelly, then custard and sprinkles). All so easy and enjoyed by the kids and when their parents picked them up they knew they had eaten a 'proper' dinner too.

But enough waffle about healthy birthday banquets... the main player in this stage of the party was... the much anticipated... CAKE!!!

The cake, the reaction and the fingers in the ears during the very loud singing!

I am no baker. It takes me a whole day to make a birthday cake, but having bought them in the past I have to say I prefer the shabbier looking variety that is infused with the secret ingredient - LOVE. Well, it was a swimming pool affair with splashing Peppa Pig and George amidst a bright blue jelly (What a to-do making that I can tell you! Many a night was spent consulting friends on Twitter to work out how to do it), complete with icing floats and lilos. It wasn't perfect, but it was 'good enough' to please the children. (Phew!)

And there you have it, another unexceptionally exceptional birthday, like many taking place in homes up and down the country every weekend.

Birthday parties are a wonderful time to see the joy of inclusion first hand, to see how our children just accept each other for who they are. It always means so much to me and I see what I was denied as a child growing up in a more segregated society where people with disabilities were hidden away. Read The Significance of the Birthday Party Invite for a light-hearted look at this.

The message is breaking through....

It is time to take a breath and assess how far Down's Side Up has come, celebrate the great things achieved and focus on the end goal.  I have been marching forward on a crusade to change the way the world perceives Down's Syndrome for just under two months now.  Two short months...

If you count one just one friend without a child with Down's Syndrome telling me she has now 'got it', then I have succeeded.

If you count just one new Mum with a baby with Down's Syndrome feeling uplifted, inspired and 'kept going', then all the late nights writing and networking have been worth it.

If you count one friend writing and telling me that she will not repeat the testing she had in her first pregnancy in any future pregnancies, then I have removed the fear from people's minds.

If one lady whose baby with Down's Syndrome was stillborn can bring herself to read my musings, I am deeply humbled.

If you consider that a link to my blog is going to be included in a book used in GP update training, than we have succeeded in gaining the attention of the medical profession.

If you count one Mum telling me how the midwife told her to 'go home and think about whether she wanted to keep her baby', just two short years ago, I know we have a long way still to go.

If you count just one of Natty's classmates Mums telling me that she watched the video of Natty reading and thinks she reads better than her child,  I have gained respect and belief of others in our children.

If you count the face of a child with Down's Syndrome being used to model clothes and market luxury holidays, then I have demystified that extra chromosome. 

If you count appearing in a national Newspaper, read by 5 million Britons daily, then I have spread the word that Down's Syndrome is beautiful.

If my postman squeezes me in a bear hug and tells me he is proud of me, I know we are loved as a family. 

If you count a stranger telling me of a friend who gave her baby up for adoption, whilst crying tears of gratitude for the work I am doing, then perhaps I can hope to prevent other women finding themselves in such a desperate place.

Down's Syndrome is beautiful.  Down's Syndrome is not to be feared.   Down's Syndrome is to be embraced and included.  Please help me spread my word dear friends xxx

An Unexceptionally Exceptional Birthday

Stevie Wonder – Happy Birthday
(The soundtrack to the day)


7.47pm  

One very happy 5 year old and her equally content 7 year old sister are sleeping soundly. 
Umpteen fabulous presents from dear friends and family have been ripped open.  Large badges with '5' were worn.
The sideboard is adorned with pretty cards. 
Many long distance phone calls have been received. Her Ladyship chatted to each and every one.


Mummy put the secret ingredient (l-o-v-e) into all the food.
We discovered that Taramasalata is not popular with little folk, even though it's pink.

Tails were pinned (well, Blu-taced) by little scarf-peeping cheats onto a donkey's bottom.  The parcel was passed, forfeits done, prizes excitedly received.  Parents were given a mid-party reprieve by some sleeping lions.
One nasty bump to the head was sustained and shrugged off.
A bit of a scramble ensued during the party bag distribution stage.


The kitchen is being tidied up by an exhausted Mummy with a smile on her face.
Precious memories have been made.


So, a beautiful birthday, a day like one you may have had yourself, not dissimilar to many that happen every day, all over the world.   It was unexceptional for all of that. 


Exceptional because it was our family, our friends, my strange choice in dips and my slightly ropey fairy toadstool cake. 

And truly wonderful because one little lady with Down's Syndrome celebrated her 5th birthday with her best friends from her mainstream class, all of them 'typically developing', and none of them giving her an ounce of special dispensation.