British Citizen Youth Awards for Mia and Natty

We are enormously proud, excited and honoured to announce that our girls Mia and Natty have been selected to receive a British Citizen Youth Award

We heard a couple of weeks ago (there were many tears and squeals) but the news has been under embargo until now. I think Grandma almost burst trying to keep it to herself, but well done for managing it Pearl! 

The girls were nominated by Learning Disability Nurse Helen Laverty and myself because it means so very much to us to be able to show the girls how proud we are of all the work they do. 

Down's syndrome ambassadors Mia and Natty are to receive a BCyA

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The sequel is in the pipeline
Goodness gracious me! What an honour! Our little blog Downs Side Up has been shortlisted as one of the world's top health blogs by HealthUnlocked and we're up for Blog of the Year no less!

Simply Be Yourself: A New Era for Mia

If my life were a corny film, this would be the moment the footage blends to slo-mo... Abba would start singing 'Slipping Through My Fingers' in the background, and my teary eyes would steam up the camera lens.

And although I do wish I could press pause on our girls growing up at times, this is not a film. This is real life. 

Natty develops at her own gentle pace whilst Mia appears to be growing into a young woman at lightening speed.

Back in the day: They grow up in the blink of an eye!

Every few years the change in our girls seems to suddely hit me. I vlogged 4 years ago about the deep feelings wrapped up in their favourite clothes; the ones you can't quite bring yourself to give away because they were worn for key moments in time and almost have the memories woven into them.

Somehow realisations such as this seem to occur during the Summer months, and this school holiday was a wake up call for me. We began by clearing the decks, taking outgrown toys and way-too-small clothing to the charity shop.

The sun, fresh air and exercise too mean that the grow chart marks on the kitchen wall lay testament to their physical growth and spending so much more time together as a family than usual, brings home the elements of your child that you perhaps miss when they are at school.

But it was the difference in Mia that struck me the most

Suddenly this young woman came out of her shell, became more noticably confident and independent, learnt life skills like brushing aside the mean girls at school and staying true to what she knows is right. 

I watched her become more comfortable in her skin and grow and glow with her newfound understanding of the world. 

Having fun together in the gorgeous Simply Be SS17 collection.
Featuring the tropical print Fantasie Swimsuit, turquoise Sunseeker Cross Front Plunge Swimsuit,
Magisculpt floral swimsuit and blue Panache beach dress.

She became really good company; someone who took my swimwear for her own, made me cups of tea, was happy to watch comedy films together, share a giggle and try new skills.

Expressing ourselves through Graffiti @UrbanGypset

Throughout the school holidays both girls faced their fears and tried activities from kayaking to scuba diving, flowrider to graffiti school for the first time. We in turn learnt to let go a little and trust in the benefits of allowing them both to take calculated risks, difficult as it always is to do. (Read Playing it Safe or Brave Experiential Learning here.)

Sometimes its easy to focus on your child with additional needs, and forget that the sporty, strong, neuro-typical child needs just as much nurturing and confidence-boosting. 

Letting go: Natty tries the Flowrider!

So I want extend a huge thank you to clothing company Simply Be for gifting some beautiful swimwear to us*. (I say us, it was intended for me, but was nabbed by Mia and she looked confident and amazing in it.) 

Bright, trendy and cheerful enough for a teen, yet comfy, modest and practical enough to wear under a wetsuit or for sport, as well as flattering and supportive enough for my *ahem* needs. 

We also opted for a navy lace cover up, proudly made in Sheffield, which I think would be equally lovely worn as a tunic over jeans with a camisole underneath. 

Did you also know that some Simply Be items are available from a size 8 up to a size 34 and they stock everything from shoes, to jeans, dresses, lingerie and accessories. 

It was a wonderful way to spoil Mia a little and celebrate her individuality, as well as giving her some much-needed attention. 

Mother daughter moments with Mia


*We chose the Sunseeker Cross Front Plunge Swimsuit in turquoise, the tropical Fantasie Versaille Control Swimsuit and the Magisculpt multi-coloured Swimsuit as well as the supremely practical and gorgeous Panache Navy Sun Dress. Items may now be in the end of season sale, so grab a bargain today and browse the AW17 collection.

Swimwear for all at Simply Be

We were sent the clothing in order to review the Simply Be range. #ad

Read about Daddy Downs Side Up's new wardrobe from Jacamo here. 

Tips and Contacts for School Pupils with Down's Syndrome

It's that time of year when many of you are preparing your children for a new term at school.

Tips for school pupils with Down's syndrome

I think back to the time Natty came to the end of her pre-school years and remember the stress and worry, the form filling and meetings, all mixed together with pride that she was making this huge step for the first time. I remember a lot of tears and late nights and the invaluable support of many professionals.

Whether your child is starting at mainstream or special school, you will want to get through this process as smoothly as possible to ensure the right package of support for your child.
So here are a few tips and ideas that worked for us, as well as some invaluable support groups that you can consult for advice tailored to your child's needs, whatever their stage of schooling.

Jacamo Suits Daddy Downs Side Up to a Tee

Bob test runs the SS17 menswear collection from Jacamo

Daddy Downs Side Up is a rare sight, seldom seen in front of the cameras save for the odd display of Dad dancing on a Friday evening during Chatty Natty live on Facebook (watch his catwalk appearance below). He is more often making his influence felt behind the scenes.

Summer Holiday Solutions for SEN Families

For most of us that blank sheet of school Summer break time leads to a mixture of relief that our children are ours exclusively for the next few weeks, excitement at all the memory-making to be done, and not a little anxiety as to how we are going to fill each day, survive the meltdowns or find enough energy, patience and/or affordable childcare.  

I certainly don't have all the answers, but here are a few ideas you might like to try.

Summer holiday solutions for SEN families

Life with Mosaic Down's Syndrome? Self-advocate Claire Minett Explains

I was fortunate enough to meet determined advocate Claire Minett in person last year at the glitzy National Diversity Awards hosted in Liverpool Cathedral. I was aware of her work long before that and she has been a role model for our family for quite some time. Claire lives independently and has educated us greatly about Mosaic Down's syndrome. I feel lucky to call her a friend. So we were enormously excited when Claire agreed to be interviewed for our We Have Down's Syndrome section.

Claire MInett tells us about Mosaic Down's syndrome

What is your typical day like?

My typical day can vary from attending workshops at the local mental health organisation to trying more excerise and a bit of shopping here and there which I don't particularly like.

Do you have any hobbies and how do you relax?

I like going out with my friends and I like to sing Karaoke. I like to watch TV and I watch quite a lot of sitcoms and soaps. I love to watch films too. I go swimming with a friend and doing relaxation classes once a week helps me. I can stress quite a bit over things so I took up knitting and it has helped my depression too. 

I know you have an unusual pet, can you tell us about him?

Claire with her companion, Cat 

Cat is not really unusual, he is just a chocolate brown Syrian hamster. He is my lickle boy and I love him beacause he helps me calm down at the end of the day...

Can you tell our readers what Mosaic Down's syndrome means?

In a person with Down's syndrome (Trisomy 21) all the cells are affected but in someone with MDS not all the cells are affected, hence the word mosaic. It affects me with my comprehension. What is simple to you might be twice as hard for me to learn. I also have an emotional disorder where I can experience a lots of different emotions daily.

You were really entertaining and educational in the BBC 3 short film Things People with Down's Syndrome are Tired of Hearing (watch below). What one thing would you love people to know about living with Down's syndrome Claire?

Down's syndrome is not scary. Don't be afraid to ask. We bring more to the world in a way that others can't.

We met at the National Diversity Awards last year (what an amazing night) but you've done lots of other important advocacy work. What are the biggest projects you've been invoved in?

Claire Minett and Hayley Goleniowska at the
National Diversity Awards 2016

I am a self advocate for the International Mosaic Down Syndrome Association based in America. I go to the conferences to give inspirational speeches for the visiting families. It is my passion to create awareness for my cause.
I'm also a booking agent for the Culture Device Dance Project which is based in London. I help out whenever I can. I'm always creating awareness through different media formats. I have a 2:1 in a media degree.