Would you Micro-chip your child?

From means testing for SEN transport to micro-chipping our children, from confusion over Type I and Type II diabetes to ignorance about colourblindness, you will find it in my column over at Britmums this month. You pop over and link any posts you would like featured in the #SENDBritmums round-up next month.

SEND Round-up: Means-testing and microchipping?

Would you microchip your child?

A headline like that is sure to grab your attention, and it sure grabbed mine earlier this month. Of course we shake our heads, we think of the civil liberties denied, the privacy issues and then we immediately think of how a system like this could be misused and abused. We abhor the thought of microchipping or children. Or do we? Parents of children with learning disabilities perhaps, those who are ‘runners’, would they always be of the same steadfast opinion? Read this post on Laura’s Blog, Would You Microchip Your Child for further discussion on the topic. 

Should support for children with SEND be means tested?

For those of you who watch Celebrity Big Brother you will be familiar with the debate that has raged this month over whether Katie Price is right to accept government funded school transport for her son who has multiple and complex needs. There are those who think that millionaires such as ‘Jordan‘ should not be entitled to such services. Jaime Oliver of Oliver’s Madhouse writes Katie Price has Opinions Divided over Council Funding School Transport on the subject.

Tania Tirraoro of Special Needs Jungle on the other hand thinks that we are missing the point entirely. She thinks the debate should be about more quality education being closer to home for the children with the greatest needs as she explains in her post Should Katie Price Pay Harvey’s Transport Bill? What do you thing, should we introduce means-testing or are we focussing in the wrong area?

Lesser understood conditions affecting many children in the UK

Type I Diabetes is very often confused with Type II. People pass judgement, think parents are at fault, blame poor diets full of sweets. How do the parents cope and educate others? Jane Northern Mumpicks it all apart in Why Didn’t I Know? and is echoed by Helen at Actually Mummy in her post Dear Coleen Nolan, Diabetes is Not my Fault.

I expect you think you know which medications you can and can’t take during pregnancy don’t you. If you are unsure you would ask your GP wouldn’t you? Well Emma 4 Facs is campaigning to make us, and our GPs fully aware of the list of prescribed drugs that many women are routinely taking throughout their pregnancies, with negative impacts on their children. Read Epilepsy, Pregnancy and Pills Campaignhere.

Colour blindness is another often overlooked condition that can have a far-reaching impact on children moving through school. This wonderful, simple short film by Colour Blind Awareness #1ineveryclassroom explains what these children see, with the Rainbow Song.

Therapies you may not have considered

Does you child take any dietary supplements? Have you noticed any effect? Maddie at Gammon and Chips weighs up the information to hand for Omega 3 fish oils in her child’s diet to counter signs of ADHD in Fish Oils: Which Brand is Best?

And the wonderfully named International Elf Service (yes, she does work part time for Santa) has opened my eyes this month to Sensory Occupational Therapy for children with Sensory Processing Disorder. You can read about the exercises and the effect they have had on her son, who also has Down’s syndrome here in Sensory Processing Disorder and Our Boy and you might just have a lightbulb moment and think her ideas will be relevant for your child.

Do please leave your #SENDBritmums posts in the link at the bottom of the page for sharing next month and Tweet @DownsSideUp and @BritMums with the same hashtag.

You can see what my family and I are up to in our neck of the woods over at Downs Side Up.

Hayley x

Which Apps does your SEN Child Use?

Screen time is something I am very conscious of keeping to a minimum for our girls. But there is no denying that iPads and carefully chosen Apps can prove to be incredibly powerful tools for children with special educational needs.

Which Apps does your SEND child rate the most?

Some parents use them to chart the activities of their child at school, using them as a communication aid between school and home. There are even programmes for this, such as Tapestry to take photos of your child's day and record their learning goals and so on.

Other children use them to communicate their needs and choices, for example using Choice Pad, and of course there are plenty of educational games that practise handwriting to numeracy, Makaton and fine motor skills co-ordination.

Last week I stumbled on two fabulous free online games that suited Natty's stage of development perfectly. We are working on recognising sight words quickly and this bus game from the TES website really captivated her attention.

SEN Assist make a range of games for use in schools, but their free Red Riding Hood game is available to anyone. It practices prepositions, matching, remembering, sequencing and other literacy skills and is great for the short term working memory that children with Down's syndrome often need help to develop.

So, aside from filling your gadgets with hundreds of selfies of up your child's nose/Frozen films/Apps of a hamster who imitates your voice, what are your child's most loved educational Apps? 

Do let us know.

On Life and Friendship for a SEND Parent

It's a funny old thing life and friendship 

Life and friendship: Quality over quantity 

Unexpected news that shocks you to your core
Your world is over
Time is frozen
Or is it?

People are afraid. To approach. To speak. To congratulate
But here is the beauty of this beast
The wheat has sorted itself from the chaff
The true friends have stayed, shone forth

Those who don't, can't, ever get it 
Will be blown on the wind
Embarrassed, awkward
Focussed on superficialities that you now see through a crystal clear lens

Your heart will bleed
Anger and hurt will fill your mind
But the fog will clear
And you will know the freedom

You are the lucky one
No niceties to endure no small talk, 
For there is no time
And you are better off

Your child is the looking glass, 
the answer
the litmus
a sieve

You are distant sometimes, private, hidden
To all but a core of the most precious friends
Soulmates and aides of quality over quantity

What more could anyone ask?



Written through the tears after reading the nominations received for Downs Side Up in the National Diversity Awards.
Thank you to those that have stuck with our family through thick and thin, to those who have supported, bolstered, understood, held us afloat and sometimes glued us back together.

Can You Nominate in the National Diversity Awards?

"It does seem a little wrong nominating Hayley for a Lifetime Achiever Award – I don’t think she’s anywhere near done yet!"

The National Diversity Awards celebrate inclusion across race, gender, sexuality and disability.

I am moved to wracking sobs and a pink tear-stained face enormously proud that Downs Side Up has been nominated for the work we do toward inclusion and acceptance for those with a learning disability and Down's syndrome, for support for all and for more inclusion in advertising and the media.

Reading the comments from those who have voted is the most humbling experience of my life, I can truly say that. I know that my little blog cannot win such an accolade, but the outcome doesn't matter, to be shortlisted would mean that we have brought Learning Disability to the fore once more.

"If, back on that scan day, we had come home and read about Natty's modelling, seen her reading, jumping, horse riding, laughing and loving life we would not have felt so scared for the future. 

9 out of 10 unborn babies given a diagnosis of Down's Syndrome are aborted. Hayley may just be saving lives with her blog."

If you could spare a couple of minutes to vote, it really would mean a lot to me and to the Down's syndrome community. Here's what the page says:

Hayley Goleniowska of Downs Side Up

About Hayley Goleniowska

A Mum who is passionate about changing perceptions of Down's syndrome, Hayley writes an internationally renowned blog called Downs Side Up that educates, supports and inspires others. The blog has won awards for its outstanding contribution to society and the power it has to create real change. 

The blog is also a mouthpiece for adults with Down's syndrome who wish to share their stories with the world via Hayley's Our Voice page.

Hayley has self-published a book, written by her eldest daughter, now 10, which is a first introduction to Down's syndrome for children. It is used to teach inclusion in schools as well as being a useful tool for medical and teaching students. It has been shipped around the world and is helping children understand the condition when a baby with Down's syndrome is born into their community. She is also producing a set of Fink cards for new parents, entitled Talking about Down's Syndrome - Conversations for New Parents.

As a speaker, Hayley works with the medical profession and charities to improve support for families at point of diagnosis, challenging outdated attitudes towards Trisomy 21, and she has recently been named as one of 25 Health Service Journal Rising Stars for influencing and shaping the NHS. She is also a Mencap Mumbassador.

Hayley's youngest daughter Natty, who has Down's syndrome, is now 8 and is a mainstream model. She has starred in many campaigns such as the Sainsbury's Back to School posters, the first child with a disability to do so. Inclusion in advertising is something that Hayley has worked tirelessly towards for the last four years as she believes that we all need to see ourselves represented in the media and she is pleased that many companies are now opening their minds to a more diverse range of models.

Then there is the fundraising. Through the blog and the large online reach that it has, over £12,000 has been raised for Down's syndrome charities and hospitals since her daughter was born. 

Hayley is at much at home talking to a new family as she is appearing live on national radio or television or in the House of Commons. She is often asked for her opinion on controversial matters and regularly speaks at conferences.

Her open letters to public figures who have expressed the notion that individuals with a learning disability somehow 'suffer' and are 'worth less' than those who don't, are legendary. 

Hayley's life's work is now a full time unpaid job to change perceptions of Down's syndrome and ensure that those with a learning disability are fully included and represented within our schools, workplaces and communities. She always does this professionally and with sensitivity. She describes it as a responsibility, a kind of calling. 

Some of her readers have described her blog as nothing less than a lifeline.

You can nominate here 

Voting closes on June 21st.

Proud to be the Tots 100 Blogger of the Month

Thank you Tots 100, for all your support over the years and for helping spread the word about what Down's syndrome is and isn't. You have always listened to my blog and kept me going when the things have got tough. Thank you so much for this award.

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January Blogger of the Month: Hayley Goleniowska

January 29th, 2015 

Bloggers from the Tots100 community are making a difference. They are writing posts which are inspiring others and bringing about change every day. Today, we’re bringing back our regular Blogger of the Month feature, and we’re kicking the series off by highlighting the achievements of someone who has proved just how powerful blogs can be.

Our blogger of the month for January is Hayley Goleniowska from Downs Side Up. Hayley describes her blog as her ‘life’s work’ – she used to be a language teacher and voice-over artist. Seven years ago, everything changed when her second child, Natty, was born with Down’s syndrome. The family learnt about the condition very quickly – and Hayley has written incredibly openly about the tumultuous emotions she felt when their life changed.

Today, Hayley says she is ‘as much of an expert as any parent can hope to be’. She doesn’t want other parents to feel the overwhelming despair she experienced following Natty’s birth and her mission is to show them that Down’s syndrome is wonderful and will enrich lives.

Hayley is a multi-award winning blogger and is regularly asked to contribute to publications. She has started the year on a high and been named in the Health Service Journal’s list of 25 HSJ Rising Stars. This is a kind of medical New Year Honours list, full of doctors and – as Hayley describes them – ‘pioneers and cutting edge thinkers’. She says she is humbled to have been included.

This year, Hayley says she would like to finish and publish a couple of writing projects which she feels are a good way to reach more families. She is aiming to work on funding and distributing copies of her family’s book on Down’s syndrome, I Love You Natty, to neonatal units and health visitors around the UK.

She has other plans too for 2015:

“I’d like to continue working with medical professionals to improve impartial support for parents making agonising decisions at point of diagnosis, and to help ensure a high standard of healthcare for those with a learning disability throughout their lives.

I’m also keen to work more closely with other bloggers and writers, be they parents or young people with Down’s syndrome. Our voices are so much stronger together, and we can share the workload.”

She also has plans for her blog, which she intends to streamline and make easier to navigate.

BLOGGING TIPS

We asked Hayley to share her top three blogging tips with us – this is what she said:

• Stay steadfast in your original motivations for starting your blog and maintain your focus. It will be organic, it will grow and go where it needs to go, you will change, your writing will change, your family will change. That’s healthy, but it’s easy to get sidetracked and become motivated by stats or sponsorship or reviews or competitiveness and this will take your eye off the ball and the bigger picture. Remember we are part of a collaborative group as bloggers, so find those who are like-minded and support each other.

• Be honest, truthful and yourself. Your voice is unique, so find it, hone it and let it be heard.
• However infrequently you post, act professionally. Always consider those who will read your words, and the impact they might have on them. Respect the privacy of others, especially in photos. And consider your children’s feelings ten years from now when they read what you have written. I like to re-read a post the next day before publishing, to see if my mood and perspective has changed, to check that I have been fair and not omitted anything.

On Meeting the Driving Force Behind Down's Syndrome Charity

Damon Hill at Sandy Park

Excited at having a rare evening out together, and at the prospect of meeting a man we had been inspired by for many years, Bob and I preened and scrubbed up on Friday evening before kissing the girls goodnight as they settled down for an evening of jolly japes and a few too many sweets with one of my oldest friends.

Scrubbed up and ready for a Down's syndrome charity evening

We were heading to Exeter's Sandy Park for a glittering charity auction evening organised by the Down's Syndrome Association and Down Syndrome International whose work supporting families in this country and across the globe is legendary. 

The host for the evening was the internationally renowned F1 racer and Sports Personality of the Year Damon Hill OBE and our dining partners were the generous Porsche Exeter and Michael Spiers Jewellers who had both donated fabulous prizes for the occasion.

Talking about Down's Syndrome - Conversations for New Parents by Fink Cards

Our powerful little cards are ready to pre-order here now, for shipping on World Down Syndrome Day, 21st March 2015. 

Talking About Down’s Syndrome

January 30, 2015  Lisa Warner 

Conversations For New Parents Is On The Cards

A couple of weeks ago I met a woman who was so passionate about changing the way the world views Down’s Syndrome I asked her if she would consider writing a pack of Fink cards to help new parents talk through their feelings and concerns after a new diagnosis of Down’s Syndrome.

I am absolutely ecstatic she said YES!!!

So it is with great pleasure that I can announce, Hayley Goleniowska from Downs Side Up is going to author Talking About Down’s Syndrome – Conversations for New Parents.

Hayley is a Mum who is passionate about inclusion and changing the way the world views Down’s syndrome. Her youngest daughter has the condition, but she doesn’t let that define her.

In addition to her hugely successful blog Downs Side Up and the beautiful book she co-authored with her daughter Mia, Hayley also works with medical professionals to improve the support that parents receive following a diagnosis, whether it be during pregnancy or after birth.

Talking About Down’s Syndrome – Conversations for New Parents will help separate the facts from the myths about Down’s Syndrome and help families get the early support they need.

Not only am I excited to announce that it is going to happen – but we are going to pull out all the stops to launch on 21st March in time for World Down’s Syndrome Day.

View the full range of Fink cards here.

Talking about Down's Syndrome: Conversations for New Parents
is on the cards with Fink cards