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!

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.




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.

To read about part 2 of our toiletting journey, Dry at Night, click here.

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

Rock and Pop advice for constipation



Diagnosis Down's

Mia kisses her unborn sister.

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.  A fallout that would last a lifetime.

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

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 at each turn if you have taken the right routes.  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, the same way you would cope if your spouse  or any other child became ill.  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!
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 child with Down's Syndrome 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 some 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.