Guest Posts, special needs

SEND Blogger showcase 4: Rainbows, Broccoli and Wristbands

And now, what better day to bring you our final fabulous SEND Blogger showcase of this summer than on the August bank holiday! And what's more, it's a three-for-two featuring rainbows, broccoli and wristbands!

First up is a blogger who has already featured in a guest post on SNJ, Ann of Rainbows Are Too Beautiful. Then, as we all love our greens, Annie of My Kid Loves Broccoli. Finally, we couldn't not include our very own Mental Health Editor, Angela, who has this year started her own blog, Wristbands and Roadsigns.

Rainbows Are Too Beautiful

Hi, I’m Ann. I live not too far from Hampton Court in London with my hubby and three kids.  Anthony our eldest is nine, David is six and our little daughter Jane is four. When Anthony was two and half we noticed he was developing differently to other kids his age.  He was diagnosed with autism before his fourth birthday.  His younger brother David, was also diagnosed at a similar age but the two boys are very different. One verbal, one not. One in mainstream education, one not. Both have a great sense of humour.
One day I was at a playground with the kids and was helping David on a spinning cup when a little girl approached him.  Usually I have to help David a lot with turn-taking at the playground.  But on this day, for a second I wasn’t needed.  The little girl worked with him and they played together without me.  It was a beautiful moment that I was desperate to share.  When I got home I googled ‘start a blog’ and wrote a post about it called ‘A ray of sunshine – autism in the playground’.

It’s quite short but is still one of my favourite posts. And then for a few months the stories jusAnnt poured out and focused on these kind of moments with my family. Since the blog started Anthony has also been diagnosed with ADHD and David with hypermobility and the posts keep coming.
The blog got its name from something my eldest son said to me on a car journey to my parent’s house on the north coast of Scotland. Whereas David tends to be overwhelmed by sounds, Anthony is more often overwhelmed by sights.  For years we thought he was afraid of rainbows.  Anthony would cover his eyes whenever it was sunny and rainy for fear of accidently seeing a rainbow.  We thought it might be because it was a phenomenon he didn’t understand.  On this particular journey through the Scottish Highlands there was rain and sun many times. Anthony had recently improved his ability to explain his feelings and as the clouds covered the sun and he relaxed I managed to ask him why he didn’t want to see a rainbow.  “Rainbows are too beautiful,” he said. “I just can’t look at them.”
My heart melted, and when I came to naming my blog I realised this phrase encompassed so much about the way our boys and our family interpret and react to the world differently to others.  How our experiences of the same things can be different and how the boys’ senses can be all consuming.   Nowadays Anthony can look at rainbows, but only if I first tell him what it’s like so he is prepared for it. And this in another way shows how the kids and the family are developing.  Coping with, learning from and loving these moments and developments are what our blog is all about. And I love writing about it.

Find me online

My Kid Loves Broccoli

Hi!  I’m Annie from My Kid Loves Broccoli.  Throughout my week I wear many ‘hats’ – probably much like you!  Mine include being mummy to Hannah (most important hat!), wife, trustee of a fab charity, blogger, and a few more to boot.

Eight years ago, when Hannah was born, life threw us into a whole new world and Hannah’s life, seemingly, wasn’t destined to be an easy one.

Annie and Hannah
Annie with Hannah

Immediately after she was born, it was noted she had a cleft palate.  After scans, her heart was found to have 2 holes and she has a heart defect which can’t be ‘fixed’.  There were so many other things identified (and labels given) over time - and not the stuff I wanted to hear as a new mum - which suggested Hannah may be affected by a syndrome and, sure enough, after seeing a Professor of Genetics, she was diagnosed with a rare genetic condition - Cornelia de Lange Syndrome (or CdLS) – which affects most aspects of her life including her mobility and the way she sees the world.  Hannah is currently non-verbal, has PMLD and was formally diagnosed with Autism this year. Life felt pretty bleak and incredibly scary for quite some time!

However, in 2014, when things settled down a little, I created My Kid Loves Broccoli (she does love broccoli, btw!).

I had several reasons for starting the blog, including spreading the word about CdLS as, when Hannah was diagnosed, there was very little on the internet that indicated there COULD be life after diagnosis – then, it felt like both mine and Hannah’s lives, now inextricably linked, were over.  It scared me reading all those research papers in the early days about what people with CdLS couldn’t do or what the future might hold…and I wanted to alleviate a little of those angsts that parents with children newly diagnosed may have. I also wanted somewhere to document and celebrate what Hannah COULD do, because, often, especially in those early years, it felt like the focus was solely on what Hannah couldn’t do and I wanted to give Hannah an opportunity to SHINE.

(I also wanted somewhere to rant! *coughs*…and to regain my humour...which seemed to have got lost along the way)

I’m not some amazingly popular blogger who posts regularly on all social media platforms – I love engaging with people on Facebook, though.  I don’t do selfies (ugh!) and my photos (usually of Hannah) aren’t the best quality.  I’m just me, Annie; an average mummy, winging my way through life and mummydom (like most parents, probably) with an exceptional little girl…who’s unwittingly taught me SO much about life in the last eight years.

I write openly…regardless. I usually witter on (can’t you tell?). I don’t write as regularly as I’d like as life often just gets in the way; you know, like it does. Sometimes I whinge, sometimes I write about really stupid stuff (like glitter poo or bingo) and often, surreptitiously, I write to educate.

Sometimes I’m sad or scared too, because life isn’t always rosy, is it?…the blog is a muddle of all kinds of things. It’s also often grammatically incorrect and long-winded.  But hey! Thanks for taking the time to read all about us.  It’d be lovely if you’d pop over and say hi on Facebook.

Find me online:

Wristbands and Roadsigns

Many of you know me as SNJ's Mental Health Editor, but may not know I have a pretty new blog of my own, Wristbands and Roadsigns. I love to write and know that I have a book inside me bursting to be written.

I work as a self-employed therapist mainly supporting families and young people where there is behaviour that challenges the whole family unit. This often involves a diagnosis of autism or PDA, but not always. You can take a look at my website here www.emotionscounsellingandpsychoterapy.com In addition to the above I provide therapeutic support and advocacy for Positive Autism Support and Training www.positiveautismsupportandtraining.co.uk

Angela
Angela Kelly

I blog (when time allows) about how having a family member with additional needs impacts on our family – both the highs and the lows. I combine my experience as an SEND mum, counsellor and advocate and hope to write in a way which will help other parents, some of whom are at the very beginning of this journey.

I think if blogs had been around when my boys had their diagnosis I would have developed more confidence to have challenged the system much sooner than I did. Instead I spent years meeting with various people and practitioners, thinking that they would act upon our meeting and move things forward on our behalf. We did, of course, meet some practitioners who did champion us, but sadly they were very few and far between.  Not that the majority didn’t mean well, they often did but didn’t have capacity to help. Which is where us bloggers can really help – Many are far more seasoned than parents taking their first tentative steps into the SEN Jungle and we can help clear the path to a point and make it less hazardous to walk through whilst giving much needed moral support along the way.  Support from health was, and still is, fleeting, with signposting being the main offer to parents some of whom will be going through many different emotions and might not be ready to openly share their journey.

SEND blogs can give you the opportunity to glimpse into what may become your world, the world of SEND at your leisure and take it at your own pace. Learning about how other families have been impacted by a diagnosis similar to your own child’s can help you prepare and manage your own expectations. And on that note, I better start writing…

Find me online:

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Tania Tirraoro
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