Love From Uncle Carl: A niece who has Down syndrome


Uncle Carl holds Natalia at her naming party.


*This post was first published in 2013. Natty is now 14 and the pair are still close.


Well where do I start with this blog post that my sister asked me to write?

It seems hardly possible that the next few paragraphs will summarise 5 years.  The time has passed so quickly but I can still recall some of the early events as if they were yesterday….

The lead up to Natalia’s birth was, I imagine, as typical as any family.  We were all super excited with the prospect of another member joining us and I was excited about becoming an uncle again.  Many trips were made to my sister's house to help out looking after Mia, and we enjoyed planning for the future over many meal times.  

I will start my story from when I first heard the unexpected news...

Bob phoned me on my mobile and I was sitting at my desk at work. It was around 3pm and I remember him saying that Hayley had had the baby, she was a girl.  And in his very typical softly spoken voice, which I can still hear to this day, he said she had Down's Syndrome.  My first reaction was disbelief and I questioned his comment, almost thinking he was joking.  When I look back, I realise how silly this was, but now feel that my reaction was because this sort of thing happens to other people…. (4 years previously a work colleague had a son with Down's and I remember vividly thinking I hope that doesn’t happen to me.  I moved from the company and so did not follow the progress of his son.   My perception has obviously changed since then.)

After putting the phone down from Robert I remember feeling in total shock. I stayed at work for another hour at the most and drove home.  On the way home one of my closest friends called me, as usual for a chat during our commute.   He asked how I was and I attempted to tell him that my sister’s new daughter had been born with Down's Syndrome, but I couldn’t.  I burst into tears and just couldn’t talk.  The feeling was of disappointment I guess, and immense worry for what the future would bring.  This child was not 'healthy', or 'normal', which is what everyone says when a baby is born.  We have a disability in the family.  These were the thoughts running through my mind.  When I think back this was purely because I knew nothing about this condition and so I was speculating…  My friend tried to chat but I ended up pulling over and putting the phone down.  I sat in a layby until I could control my tears and then drove home.

Seeing Life in a New Light after Divorce #AD



Moving on after divorce, with the help of Elesi 

Divorce is tough. Even the amicable ones are hard. 

It breaks hearts, divides families and makes us second guess ourselves. For me, a light went out inside and I didn't laugh, sing or dance for a very long time.

One of the most difficult parts for my girls and I was leaving our beautiful family home and watching it sell and having to start from scratch. The family home was a place filled with memories, the venue for parties and games, stories, hugs, smiles and tears as well as latterly, much unhappiness. This was where they grew up, built snowmen, learned to ride bikes. It was the backdrop for every living memory they had. It's where Natty was actually born almost 15 years ago.


Free... but in need of some decent lighting!

We moved out with very little, but one friend remarked that what we did take was mostly sentimental. Photos, children's art and twinkly lights. We rented a small bolthole for a bit, and three years later have now have moved into our permanent home. 

It's lovely, stable, warm and calm but needs a lot of work. Welcoming 1960s charm is everywhere, it has the feel of a much-loved grandparent's house, but that includes Bakelite electrical fittings, textured wallpaper and quirks like a loo that flushes hot water!  

Family Story by Elaine Walsh: Bonding with my Daughter

Please welcome Elaine Walsh and read her beautiful story below, as she tells us about the early days with her daughter Síofra, who has inspired her to help other new parents.


Síofra and her Mum Elaine


When my daughter was born I wondered why I wasn’t feeling that strong bond as we lay beside each other in the hospital.


We received a post-natal diagnosis of Down syndrome when Síofra was born. I wondered if that was why I wasn't connecting with her. I felt really guilty about it.
Myself and my husband had desperately wanted our own child. We went through IVF unsuccessfully. We were thrilled to be pregnant. So I really wondered why I wasn't besotted. I was worried that I wouldn’t be able to see past her diagnosis. I judged myself really harshly for even thinking like that.⠀⠀⠀⠀⠀⠀⠀⠀⠀

I didn’t realise that because I had a cesarean birth I hadn't felt the explosion of Oxytocin, the naturally occurring love hormone, that mothers experience when they give birth vaginally. It creates that bonding feeling.

Three years later, I have come to understand that it was more probable that the lack of Oxytocin in my body and the fact that she had to be lifted from my body was the reason that I struggled to bond with her. And that it had nothing to do with her extra chromosome.⠀⠀⠀⠀⠀⠀⠀⠀⠀

Twinkl Membership Giveaway and New Symbols App

Win 6 months Twinkl Ultimate Membership


Here at Downs Side Up we love to bring you news of innovative ways to help your child develop and communicate more easily. 

From Makaton signs to Singing Hands DVDs, reading schemes or specialised Apps, gadgets and gizmos. If they have worked for us, we like to spread the word.

We also love to offer you a freebie, especially if it's an educational freebie. So enter our competition at the bottom of this post to win 6 months Ultimate Membership with the resources experts Twinkl. This fantastic prize is worth £50.

Twinkl have launched a new Symbols App

Learning Disability Ambassador Lloyd Page Reviews I Love You Natty Book

Our dear friend Lloyd Page wrote this glowing review of our book I Love You Natty which first appeared on Independent Consultant Nurse Steve Hardy's blog here. Steve supported Lloyd to write this fabulous piece.


Lloyd Page and his copy of our book I love You Natty


Lloyd works for Mencap, write books, trains medics, tell lots of jokes and has a learning disability. He is one of a handful of people who checked in on us daily during lockdown to see how we were doing. 

Despite being hospitalised with Covid-19 himself, Lloyd is always thinking of others. This is what he thinks of our book:

Presenter with Down's Syndrome: George Webster Delights CBeebies Viewers

George Webster show us why we all need to see ourselves represented in the media.



The following article first appeared in iNews



“It’s my friend George! He’s the same as meeee!” my daughter Natty squealed, as we tuned in specially to watch CBeebie’s newest presenter teach us how to blend a smoothie. 

Natty’s college-aged big sister Mia perched between us on the edge of the sofa, each of us grinning with the sort of pride you only feel when a family member appears on your screen.

 

Like any professional kids’ TV show presenter, 20-year-old George has all the right characteristics to get BBC pre-schoolers and those with special needs glued to their screens; effervescence, bubbly charm, a quick wit and a trendy vibe that his viewers aspire to emulate.

#AD Jaques London Toy Review, Giveaway and Discount Code

Enter our Jaques London Magnetic Calendar Giveaway below: 



a Rafflecopter giveaway


I was delighted when the lovely Educational Toys people at Jaques London got in touch to see if I'd like to offer Downs Side Up readers a chance to win a gorgeous Magnetic Calendar.