Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Post natal   /  Devon


On 4th May 2011, my second granddaughter was born,
They named her Devon.
We didn’t know before that day, a special child was on her way.

A heart defect had been detected,
By the age of one, it had been corrected.
We all held our breath when she went under the surgeon’s knife,
We felt unable to thank him enough for saving Devon’s life.

Devon came on in leaps & bounds,
Her smile has charmed everyone around
A happy girl usually from morning till night,
So we could tell when something wasn’t right,
A couple of seizures caused great anguish,
Worse was to follow with pneumonia & sepsis.

The appointments filled the calendar,
With checks on her heart, ears, eyes etc.
All tests were good, Devon was just long sighted
But her hypotonia caused her mobility to be thwarted !
Once she was given a walking frame,
Off she went, no more being lame
What a joy to see Devon moving on her own
She now got stronger and she’s grown

Although Devon appears to have few words to say,
If you put on the songs she knows, she’ll blow you away
Devon knows so many songs now, her words just flow.
Musical films are a favourite too, ?
when she visits she knows what she has to do
Devon hands me the fire stick remote control
With a look that says it all, come on Nanny don’t make me wait
I want my favourite films from a recent date
The Greatest Showman is the latest one
With which we have to sing along

I feel so blessed to live so close to Devon & her sisters
Seeing them nearly every day makes my life so much richer.
In my lifetime I’ve seen a change of attitude
& for this I am filled with gratitude
Thank goodness Devon isn’t confined to an institution
But still, more resources would be the solution

People say that ‘they’re so loving’ & while this can be true
Devon gives the best bear ? hugs & wet sloppy kisses too
But ignore her at your peril & she’ll turn from angel ? to little devil
Her mobility has recently had a surge
Resulting in satisfying her urge
To stand up tall & reach new heights
To turn on taps & other such ‘delights ‘?
It has no effect to wag your finger & look all haughty
She’ll just reward you with a smile & say ‘Devon’s naughty’

One minute your heart soars at a new achievement
Till her younger sister overtakes her & you see her disappointment
Devon loves her school, the staff & her friends very dear
She filled us with pride last month getting ‘Achiever of the Year ‘

Devon’s personality grows day by day
Learning new words so she can say
‘Nanny stop, don’t brush my hair’
You know that I am sensitive there
If you ask her what she’d like for tea
She’ll always say pizza ? & ice cream for me ?

Devon has an empathy for those around
She’ll lift you up if you’re feeling down
If her sisters are crying, she’ll join in too
Oh what a hullabaloo ?
She loves to play at being mummy
With her baby doll putting in its dummy
Devon puts her ‘baby’ to sleep & tucks it up
But not for long then she says ‘wake up’
She’ll do this to Nanny & Daddy too
Oh what fun we have with you

I’ve had 7 years of the joy & sometimes pain
Fear of losing you, but I’d do it all again
For Devon you are beautiful inside and out
You bring me such pleasure whenever you’re about

When in public, people will stare
All they see is your DS & your wheelchair
They can’t see the 7 years that it’s taken you
To achieve the things that others can easily do
You’ve worked so hard to sit up, crawl & at last to walk
To eat solid food, communicate & now to talk
Nanny couldn’t be more proud of you
I hope you know just how much I love you ?