I've already told you, it's called Triceratops!

A precious little clip of our clever youngest girl, not only delicately and proudly painting independently, but saying Triceratops pretty clearly too!

The Importance of Respite and True Friends

It's very easy to say...

respite, a bit of time off, a break, a change, a rest

We all have very different lives.  

Some of us work, some seek elusive work, others choose to stay at home, a few can afford extra help, others have family nearby to lend a hand, some are lone parents, some are lonely within relationships, others are fortunate to find themselves within supportive partnerships, part of a team.

But what we all have in common, as parents of children with a disability and special educational needs, is that we need time out in order to recoup our energy levels and enthusiasm .  And time for yourself is really difficult to actually factor in to your life for many reasons, often not least because you don't think you deserve it.

Here's my experience...

In the early years one stumbles in a state of worried exhaustion much of the time, from one illness, hospital appointment or surgical procedure to the next.  In between you are happily bonding with you baby, constantly amazed by what they are achieving.  Breastfeeding meant that both of my babies and I could not be far from each other for long, so in those days, time off meant hitting the sack to grab a couple of hours' sleep or doing a mercy dash around Morrison's, delighting in looking at fresh vegetables alone, while a family member or close friend played with the girls.  

My family live many hours away, so there was never anyone on hand to step in on the worst of days, particularly hard if hubby was working away.  That was always a cue for a medical crisis.  

Trust has also always been a big issue for me.  Who could we leave the girls safely with?  Who could deal with Natty's dietary needs or cope with her propensity to choke?  There were always so many issues to explain.  No-one can do it as well as the parents after all, can they.  And part of living through any kind of shock is that it leaves you wanting to be completely in charge, to over-organise every element of your life, so that you don't get any surprises again!

Eventually though the cracks begin to show in any super hero's foundations.  For me it was my back that began to bemoan the lifting of a little lady who was growing stronger and heavier.  That in between stage of needing lifting into cars and carried the last part of every walk, but being a big enough  to make a chiropractor's hands rub with glee.

For other friends it has been migraines or depression.

This is when we need to listen to our bodies, and those around us telling us to look after ourselves.

This is when we need to force ourselves to eat a little better, to walk round the block for 10 minutes each day while a trusted friend or partner listens out for sleeping children, to ring an old friend and chat about anything but the daily worries, have a giggle about the old times, rent a funny DVD, buy a new sassy lipstick.  Remember that you need to look after yourself as well as the rest of the family, because if you don't those cracks will widen.

At this stage of our journey, we decided to move into a temporary dwelling and do some fairly heavy duty, messy, disruptive work to our house (primarily to accommodate Natty living with us as an adult if necessary).  This also combined with The Statement of Special Educational Need process for Natty, which required many meetings, research and hours of writing reports in readiness for her starting school.  So, although her heart surgery was behind us and she was stronger and healthier with mainstream school ahead of her, we had taken on other external stresses and worries.

We did take a wonderful family holiday, which undoubtedly kept us all afloat and we borrowed a friend's 'supernanny' for a night so we could go away.  But somehow I always felt on red alert, adrenaline high, ready for the next challenge.

Finally my body shouted STOP!

Facial palsy, right side weakness.

MRI scans, blood tests.

A brain tumour?  MS?

Well, happily, it all turned out to be (nothing but) stress and exhaustion.  

So we all sat up and listened.  A plan was hatched.  A whole weekend away was arranged with my dearest oldest friend who has also been rather poorly herself.  Natty was old enough and well enough to be left, along with her sister, with my husband at the helm.

It turns out that this is really the best kind of medicine.  A quiet weekend with someone who delights in nurturing you (and vice versa), someone who knows your pre-mother identity.  Who has seen all your hideous old outfits, laughed at all your dodgy hairdos, rolled her eyes over your inappropriate choice of boyfriends.  Someone you can reminisce, laugh, cry, share and hug with.  Someone you can eat, drink, walk and shop a little with.  

Someone who dressed as Adam Ant with you, remembers your terrible denim dungarees, stuffed chocolate sponge pudding in at the rate you did,
 and  helped you pin that Bros poster on the living room door of your shared student house!

The key for me was that this was the first time in 7 years that I had had a weekend of purely adult time.  I couldn't believe how it felt not to be on red alert.

Oh, and did I mention the sleep.  I clocked up 33 hours in 3 nights!  

So back I came, refreshed and human.  Ready for the upper respiratory nonsense and the lack of sleep that accompanies it.  Ready for games and art and devising learning activities.  Ready for doing a TV appearance.  Ready for anything.

I'll try not to leave it 7 years until the next pitstop.  Neither should you.  Think of it as an insurance policy.  Don't be afraid to accept help, it is not a sign of weakness.



There have been some fabulous responses from friends regarding this subject upon reading the blog...
The first comment below says it all;

"If Momma ain't happy... ain't nobody happy!"

Another friend reminded me that all Mums "need to put on their own air masks first before attending to others."

And a third likened the 'red alertness' we parents of special needs kids feel pretty much constantly, as "penguin ears", after the way penguin parents can always pick the sound of their baby out in a crowd.  We have to close the penguin ears sometimes.

Downs Side Up is honoured to have been shortlisted in the Britmums Brilliance in Bloggers awards, in the INSPIRE category.

Vote here!

Photo Exhibition, Bella and Sarah Gordy!

An exciting week for us here at Downs Side Up HQ...

A beautiful new Photographic Exhibition by Simon Burt Photography in collaboration with the Cornwall Downs Syndrome Support Group, featuring many of our beautiful local youngsters with Down's Syndrome will open on 3rd March at the Eden Project.  After that we hope it will be housed at The Knowledge Spa, Treliske Hospital and then maybe guest galleries.  I can't wait to see the photos of all these amazing characters, including our little Natty.  Who knows...a calendar next?

New Trisomy 21 Exhibition opens at Eden

Our second positive article in a national publication is on the shelves this week, until Tuesday 28th.  I have had it read to me but haven't actually read it in print myself... enough emotional outpouring already :) 
Another rung on our ladder of seeing positive images of our children in the media has been climbed.  A few more preconceptions about Down's Syndrome have been changed.  A handful of new/prospective parents have hopefully been encouraged and inspired.

Our article in Bella Magazine this week...

I had my first negative comment (1 in 114 aint bad!) (actually 1 in  10627) hits sounds even better!) on my blog this week.  A friend helped me see that this is actually a positive in itself.  We are so popular that we have now spread beyond the readership of merely friends and family.  And if someone can actually be bothered to write about her negative feelings, then perhaps we have helped her work through some issues she has.  So we published it and left it at that. Dealing with it has been another learning curve, another lesson in life.  (We soar above of course :) )

However, the true highlight of my week was being Tweeted by the amazing actress Sarah Gordy, who features in the current series of Upstairs Downstairs.  Sarah happens to have Down's Syndrome too by the way.  Do take the time to watch on Sunday evenings.

Sarah Gordy in Ouch! Magazine

Mia's Mini Blog About her Sister Natty

Mia (7 years) decided that she wanted to write a mini blog post about her experiences of having a sister with Down's Syndrome.  She sat quietly and wrote over the last couple of days.  This is what she produced.  These are her own words, spelling and grammar, even line spacing....

"When my sister Natalia was in hospital

I was very, very woried about her .

Every day I went to see her. i was angry and dissappointed that I could not go in.

When I was aloud to see her was the ONLY

time she looked round when she hird my  voice.

During her operation I was not aloud to see her

which made me very woried because I thought she might have died and if she had died I would have no one to play with.

When she came home I was relived to find the fact

that she was alive and that made me very, very happy.

A few weeks later she was as pretty as a picture and up and runing.

One week after that I remember when I put her diurretix down

the tube.

I thought she was beautiful and she was in my arms

and when ever I talked she would look round at me in a loving way.

A cuple of weeks later she had no tube in her nose and she had a bit of golden hair.

When 3 she was siting up right. [ I use to help her with her exersises]

When 4 she was as strong as me.

Now 5 she is a little pain but she is just as beautiful.

THINGS I FIND HARD ABOUT NATALIA…

She calls my name, but doesn’t asking me anything.

On the stewls  in  the  kitchin  she  asks  to  get  down then asks to get back up again.   

Sometimes when i’m asleep she comes in and wakes me up by sitting on my head!

THINGS I LOVE ABOUT NATALIA

She is beter than any other sister in the hole world. 

She is funy and sily and makes me laugh.

When we go riding I think she is the best rider.

I am proud of her."

Something for Special Siblings

Mia welcomes Natty home.

Mia was two years old when her Mummy became pregnant with Natty.  

There had been 3 miscarriages in between, so there was very little excitement, more apprehension and a sense of bracing for the next possible emotional upset.  (Oh, the irony!)

But the morning sickness kicked in.  A very good sign that things were going ahead.  But boy did it kick in hard.   Mia's Mummy became a useless, exhausted, humourless, mess.  

She couldn't eat or drink anything except San Pelligrino water without bringing it back.  She couldn't even cook nice meals any more, as the smell made her ill.  She lost weight and looked really terrible!   But ready meals weren't so bad, in between Daddy's great cooking.   

Little Mia would sit and worriedly watch her, rubbing her back and saying "I don't like it when you're sick Mummy."  Mummy wasn't much fun during these days, there were definitely fewer zoo trips and more CBeebies hours clocked up than she was used to.  Mia looked forward to time with Daddy and Mummy's brother Uncle Carl, who would swoop in to do wheelbarrow races in the garden, or make helicopters out of boxes.

Already, as with any first child when the second is on the way, Mia's life had begun to change irrevocably.  But she began to bond with the baby in Mummy's tummy.  She saw her on the scan photos, talked to her at story time and, amazingly, the baby would talk back, telling her to eat her greens!  

The night Natty was born, Mia went to stay with her Godmother, her first sleepover.  So spoilt, such fun, so grownup. 

On her return the next day, everyone was so sad.  Mummy and Daddy were crying.  Uncle Carl and Daddy were dismantling the baby's crib, putting it in the garage.  Where was her sister?  Grownups explained that 'Natalia' was not well.

She was taken to The Hospital, a place where they made you really scrub your hands hard with strong soap.  So desperate to see and hold her little sibling, she took a 'Little Sister' babygro gift for her. Amazingly, Natalia had a matching 'Big Sister' T Shirt gift waiting in her crib just for Mia!  It was hard for Mia to understand that they could not exchange these gifts personally because the cold she had could kill her sister if she gave her a hug.  She watched Mummy do it for her, from behind the barrier of a glass window.

Later, Mia and Uncle Carl would watch Natalia being Christened from behind that same glass.  Dressed only in a nappy and various tubes and monitors, attended only by Mummy, Daddy, Grandma and the hospital minister, but Natalia too was certainly missing the sound of that voice she heard the most while within the safety of her mother, that of her sister.

Days passed, Mummy virtually lived at the hospital, but made sure she was home to share breakfast and a meal and a game with Mia each evening.  Mia spent her days with Grandma. 

Emotionally exhausted Mummy and Daddy held Mia close between them in bed each night.  She felt like their only precious glimmer of normality in a world that had been torn apart and turned upside down.  Her health, beauty and perfection seemed too impossible to be true.

As Natalia grew stronger and Mia's cold was fought off, the two were allowed to meet.  They were treated to the use of a private side room as Mummy was spending 18 hours a day at least trying to teach Natalia to breastfeed.  Mia carefully sat in the middle of a large bed and was allowed to hold her sister on her lap.  She was unphased by the tubes.  She just looked into her sister's eyes, kissed her and chatted to her.  For the first time, Natalia opened her eyes and turned her head towards the sound of that oh so familiar voice, the one that had been missing.  In the days that followed, the only time Natalia would wake long enough to feed for more than a couple of minutes was if her sister was chattering away in the room.

The relationship between the two sisters was set in stone from this moment forward.  

In hindsight, the look of worry, of a very deep understanding is evident in little 2 year old Mia's eyes in photos of this time.  She grew up over night.

She gave her teddies diuretics.  She held the syringes high and still  as they fed her sister's milk into the naso-gastric tube.  She gently helped to wash her in their shared baths.  Despite Mummy and Daddy being terrified for the frail infant,   Mia was always allowed to hold her when she wanted a cuddle, as they knew this bond was crucial.  They kept the fact that their hearts were in their mouths well hidden.

Mummy has always been aware of how tough things can be for Mia.  Natalia has always taken a lot of time, care and patience whilst creating a lot of worry.  But her initial fears for how Natalia's existence would effect her sister have been allayed.  Mia has grown into one of the most sensitive, caring, non-judgmental and responsible 7 year olds imaginable.

Mummy has always tried to factor in special time for her.  When in hospital, sharing a camp bed at Natty's side, this was in the form of little treats and nice art activities.  During Natty's heart surgery, Grandma took Mia to the science museum in Bristol in between visits.  This way she was given special attention, but not excluded.

These days, Mia's parents acknowledge her maturity and compensate for the attention Natty demands, and so freely gets from strangers, by building in special alone time with her.  Shopping trips, meals out, little beauty treats and stay up later night.  Just watching X Factor without your little sister is great for any older sibling.

COMING SOON - Mia is currently writing her own mini blog post from her perspective...


Practical advice and support for siblings of disabled children and adults of any age:
SIBS - For brothers and sisters of disabled children and adults
Sib Space - Offering support and activities for siblings in Cornwall

Ode to Potty Training

Not an ode exactly, more of a nod towards potty training/toilet training/toiletting.

One of the most stressful uphill challenges in any parent of a young child's life.

Add in the fact that your child has a learning disability (deep sigh).

Already that hill of a task has become Mount Everest, hasn't it.

Well, yes, teaching your little one to use the toilet will be tricky, but take a deep breath, accept that fact, and look around for tips that might help your journey become easier and more humorous.

First of all, accept that ALL children are different, and the timetable for wanting to use the toilet will differ for each one.  Any time from 3 years to 8 years and upwards is 'normal' for  a child with Down's Syndrome.

Wait for the cue to come from your child.  Do they pull at their clothes or tell you when they are wet or soiled?  Do they try to imitate older siblings or friends by trying to use a potty or toilet?  Are nappies (diapers) dry for longer periods of time?  Then they are ready for your help to move them forward in the toiletting game :)

This is just our experience, yours will be different.  Let yourself be led by your child. (And burn any potty training manuals written by ladies who don't have children of their own..!)

To begin with we sat Natty on a potty just before bath time each night.  It was fun, and there was no pressure, she relaxed while the bath ran, and occasionally produced a wee!  We did this for about a year without moving forward.

A year and a bit before she started school, we discussed potty training with her pre-school.  They were keen to help out and we made plans together so that we did the same at home and at pre-school.  We spoke to a lovely Continence Nurse (I think I inadvertently pushed past several short lists, simply found her work number and rang her...)  She was a wealth of knowledge! She made sure there wasn't a physical barrier to starting toilet training...could Natty go several hours with a dry nappy for example?  Once we were sure this was the case, she suggested using a ladies' incontinence pad (brands other than TENA Lady are available I'm sure!)  inside a pretty pairs of girls pants (I guess that is panties for our American friends, not trousers!).  This way she could choose her own pretty 'big girls' ' pants, and feel grown up, with all the security of a nappy.  We had tried 'real nappy trainer pants' before as they let the child feel when they are wet, but the bulkiness and similarity to a baby's nappy were now holding us back.

We started using the pads.  Each day we asked her 20 times at least if she wanted a wee.  We took her each time we went, and each time her sister went to the loo.  After a few weeks, we began to get a few 'hits' on the potty.  The progress was painstakingly slow, and I guarantee you nappies would have been the easier option.  Particularly tempting as they are free from the government for children with disabilities.  I focussed on the end goal and refused them.

We began to buy smaller pads in the hope that by feeling wet she would ask for the toilet.  This didn't happen, but we calmly took spare clothes wherever we went and simply changed her several times a day, when damp.  We focussed on the successes and praised Natty highly.  We never once got cross with Natty for her failures (although I have privately screamed in a cupboard when she has wet on a freshly made bed, new carpet or sofa.)

Finally we reached a point (it happened to be summer) where we felt Natty was being a bit lazy and was capable of more (perhaps 6 more months after starting to use the incontinence pads).

We bit the bullet and stopped using any kind of protection during the day.  No turning back.

Day one - 6 accidents.

Day two - 5 accidents.  (that's a lot of washing...but hey, it was summer.)

We stepped up our reminders.  We realised Natty preferred sitting on the toilet to the potty, so we put all the potties in the loft (1 for each room of course) and bought sturdy, large steps and comfy, padded child's toilet seats.  These are even available with arms to help independence.  Do not be afraid to ask your Physio or OT if you have one, for a sturdy large step that your child feels safe to climb and turn around on.


We bought 'Piddle Pads' to protect car seats and chairs. (See Useful gadgets page)

The accidents continued, but with perhaps the same number of successes each day.  We questioned Natty's readiness, but I think I could be quoted as saying I knew that she was ready and that she would start school in pants if it killed me!  Then after day 10 we noticed only 3 accidents.  This was the point of no return.

We bought hilarious fluffy toys in the shape of a wee and a poo (pictured above).  We encouraged Natty to hold whichever one she needed at the time (and if that failed, they at least made us giggle during the many hours spent in the lavatory!)

We made up ridiculous songs "If you do a weeeee weeeee on the tooooilet, you can have a chocolate drop, yum, yum, yummmm" (Did I mention the bribery?  The less said about that the better ;) )


We read books and looked at flash cards while Natty sat on her throne to pass the time.


Star charts meant nothing to Natty, but give them a try.  We also bought a large pink potty that sang when she produced a wee...but she got wise to how it worked and simply pushed the buttons inside to get the reward.

That was 6 months ago.  Natty began school in September, aged 4 years, wearing ordinary pants, and now only has 1 accident every fortnight or so (aged just 5)... just like her 'typically developing' peers.  She still rarely remembers to go to the loo when she needs to, seldom actually asks, but we now only have to remind her every couple of hours or so.

I think we can count that as a resounding success, don't you.




For more practical info and continence products, visit ERIC: Education and Resources for Childhood Continence

Rock and Pop advice for constipation

Diagnosis Down's

Today I heard that a friend of a friend of a friend on the other side of the world is reading my blog.  

She and her husband have just received the  diagnosis that their beautiful unborn baby has Down's Syndrome. 

I hear they are finding strength in our photos and words and are moving forward with the pregnancy.

It's hard to begin to describe how I feel about this...other than just a huge sense of responsibility, an enormous amount of love sent to this couple during this time of devastating shock and a deepened urgency to let a wider audience see the realities of Down's Syndrome today.

I think back to our pregnancy, and wonder how we would have felt and reacted had we known for sure that our second baby girl had Down's.  I know many couples who say the ante-natal diagnosis gave them time to get over the shock before meeting and bonding with their baby.  I hold these people in high regard, how strong and firm in the knowledge of their own strength they are.

I hate to think what might have happened had we known.  I might have panicked, wanted that imperfect baby out of me as soon as possible, disgusted by her imperfections.  Perhaps I would have wanted to keep the little life that was moving inside of me and my husband not...what then?  Perhaps we would both have rallied and strengthened ourselves in time.  Who knows...

But I am not, and would never be one to judge any decision that any mother makes.  We cannot understand another's path unless we have walked in their shoes, understood their circumstances and family backgrounds.  The same goes for those who feel they cannot cope with Down's Syndrome when it surprises them on birth day, and choose to offer their child up for adoption.  I say with honesty that it crossed my mind back then, and had it not been for supportive family, friends and community, who knows what fallout we would be suffering now.

All I can say, with a smile of pride on my face from where I stand now, is that Down's Syndrome alone is not a reason to terminate a pregnancy or give away a much wanted child.  We must not judge, but support.  We must dispel fear with love and humour.  We must enlighten the ignorant with beautiful examples of our fully rounded children leading happy integrated lives.  We must all include and integrate everyone into our society.

Live, love, laugh, learn, eat, drink, dance, make friends, enjoy nature...what more do any of us want out of life.

I read of a young mother who suffocated herself and her little boy who has Down's Syndrome.  This desperate act speaks volumes about how far we all need to go to include, accept, support and help other members within our communities. 

But I refuse to provide a sugar-coated Disney version of Down's Syndrome.  There will be worries.  It will be hard work at times.  Some of the waters you cross with be unchartered.   You will wonder if you have taken the right route.  Most people will be supportive but some will patronise your child.  Allow yourself time to talk to them all regardless.   

There will be illness, perhaps surgery, but you will find an inner strength to cope.  You will meet amazing parents who have done the same along the way, and you will share a glance that instantly says "We have both broken through the glass ceiling of life, haven't we."
Others won't 'get it', but you will smile and hope they stay by your side regardless.  Your child will excel at some things and really struggle to learn others.  Just ask my husband what I am like if someone throws a ball at me, and he will tell you that we are not all good at everything (I cower by the way).
There will be days when the stubborn behaviour makes you want to scream.  But that is just parenthood.  

A (thoughtless) pregnant mature Mum once said to me, with Natty in my arms, "I'm having all the testing because I wouldn't have time for one like that."  Well I guess if you haven't got 'time' for a child like Natty, then you haven't got time for any child.  Full stop. 

But listen - all children are different.  Some are prettier and cleverer, some are whirlwinds and others are shy, some are loners others thrive on attention.  At the end of the day, each one reflects it's family, looks like it's parents and gives back to life what has been put into its upbringing.  A child with Down's Syndrome is more like it's family than other children with Down's Syndrome, although there will be similarities.

I wish I had known all this when Natty was born.  And this is my simple message to those just starting on this journey.