Special Needs Round-up: Live, love, laugh, it’s Christmas

We are hurtling through December and for many it’s a time to prepare for Christmas, often in a stressful flurry. For others it’s a time of peaceful reflection and rest. But however you celebrate Christmas, either with big parties, church celebrations or small family gatherings, or not at all, the December holidays are a time for reflecting and appreciating what we have. I have been struck by how much this Christmas seems to have been driven by rigid present lists for many this year, people losing their spirit of the season, jaded by costs and taking on too much, when it should be a joyous task of finding a tiny gift that makes the children in your life smile.

As I pondered the form this December round-up would take, I was shaken to the core by the very sudden death of the little girl in America who had Down Syndrome. She was the daughter of a lady who wrote a blog, a bit like mine. It is called My Sweet Warrior Princess. Precious, beautiful Aziza was just 6, as is our Natty. The pain her family were going through was too much to contemplate. The latest blog posts of her Warrior Mother are desperate, tragic, beautiful, honest and heart-breaking, filled with love and a celebration of Aziza’s life. I cannot imagine writing at such a time. It is hard enough for me to write this paragraph through the tears. What an incredible woman she must be. My heart bleeds for her, her teenage daughter and her family, the friends and classmates who mourn Aziza. How amazing they all are to remain thankful for that very special person that touched their lives.

As a little way of remembering Aziza forever, we have bought an Elf on the Shelf, a new little family tradition. How Aziza and her sister were enjoying theirs was one of the last posts her mum wrote before her angel passed away.

And so, another reminder that Death is very much a part of life, and a that we must all stop and enjoy each day, each moment, as if it were our last. From that I decided to pick some blog posts to feature this month, that talk about Life, Love, Laughter and Tips for making things that little bit easier along the way.

Live

When Natty was born we resolved to grab life by the horns. Her existence was in the balance in her first few days, and we have always been determined not to put off doing what we want to do with the kids until tomorrow, if we can do it today. This month has seen the first year anniversary of my blog Downs Side Up through which I simply try to show other families of children with Down Syndrome what is possible for our children. Natty just has a go at everything in life and sometimes it takes a little longer, other times it doesn’t work out well, but at least we have a go. This year she has done some modelling, spoken on the radio, appeared on TV, danced with Flawless, hugged Dr Hilary Jones and become an ambassador for children with disabilities everywhere, as well as learning to zipwire, pick her nose, write her name, swim without armbands (nearly) and be cheeky if she doesn’t like what she is being asked to do. See her in action in Happy 1st Birthday Downs Side Up, where you’ll also find a video of ‘that blog post’ I read at Britmums Live this year: What to Say When a Baby is Born with Down’s Syndrome.

Melissa, Mum of Isobel ,who has CP, and wife of a deaf artist Miles, writes The Mostyn-Thomas Journal. In her post Keep Us Close For Christmas she showcases a touching project, run by Scope. A Christmas tree was covered in stars, upon which families had written wishes for themselves and their children. The wishes show that our children with additional needs teach us a lot about priorities. All they want is the same opportunities as every other family to enjoy their lives and their children, for none of us know what is around the corner.

Steph Nimmo who writes Was This in the Plan??? also reminds us that growing older is a privilege denied to many in her wonderful post about her husbands birthday: Happy Birthday Daddy Pig.

Love

I came across a delightful post this month, written by Jonty  Babe over at It’s a Crazy World.  All You Need is Love tells the delightful story of friendship between two girls, one being her daughter who has Autism, the other a classmate who communicates differently. The post shows that where there’s love, there’s a way, and goes a long way to busting the myth that children with Autism are unfeeling.

Now I come to love of another sort. The love of doing something we enjoy for intrinsic reasons. For many of us this is blogging. I for one have found it cathartic, therapeutic, confidence-building, a way to meet others and gain genuine support, as well as offering it out. But it is oh so easy to get sucked into a competitive world where stats are everything, rivalries run high, plagerism occurs and what once was a relaxing passtime becomes a game of technical catch-up. I have felt this on and off over my first year of blogging as it’s easy to get excited by an award or write-up. I was upset to read that Kathryn Brown at Crystal Jigsaw was feeling this in the extreme. An established blogger, she has taken a little break from writing, something she enjoys, because it is becoming disheartening. Please read Blogging: I Can’t Do This Anymore. It really made me more determined to “sod the stats” (in the words of one of my blog heros Her Melness Speaks at Britmums Live. Oh go on, pop over and read her lovely Xmas post Bowled Over By Christmas too ).

Laugh

I found a few posts that had practical ideas in them for making Christmas just that little bit better for children with special needs this month. Ways to make us all laugh, or at least not melt down and become overwhelmed. Autism Mamma, Jeanette writes #taachat Christmas, outlining how her family have adapted their celebrations to encompass her daughter’s needs. Simple, but very effective.

In our house we are giggling and enjoying the daily online advent calendar by the Makaton Charity. Each day you can see a video clip of children or adults signing a new festive word. It’s fab! (Take a peek at day 3 to see Natty and her big sister).

On the subject of signing, this time BSL, Rachel, aka Exeter Mum, mum of a little boy who is profoundly deaf and has CHARGE Syndrome, asks the very obvious yet important question that I have never considered, just where can we find a signing Santa? Read her post A Thought on Father Christmas here. Maybe someone out there has the answer to her question…

So, in the words of The Elf on the Shelf,  I’d like to wish you all a Christmas of peace and a year full of joy. Be easy on yourselves, delight in the smaller things, hold the ones you love a little closer, forget the ‘stuff’ and savour the ‘experiences’. My motto is always that it is the process not the product that counts and this is true of Christmas too. Oh, and don’t forget to treat yourself as well. I’m going to start right now, by opening that box of Turkish Delight…

Hayley xxx

If you would like a chance t0 be included in next month’s round-up, please add your posts to the linky below. We love your comments too.

About Hayley Goleniowska

A former language teacher and voice-over artist, Hayley is now the Mum of two gorgeous girls, the youngest of whom, Natty, has Down’s Syndrome. She blogs, speaks and writes articles on the subject for all who will read or listen. Through Downs Side Up she aims to both offer support and encouragement to new families with a diagnosis, and gently change perceptions of Down’s Syndrome from within hearts through beautiful words and photos. Her daughter Natty is a clothing model and an amazing ambassador for children with disabilities everywhere. She has appeared in The Sun, Mail Online, Bella Magazine and on ITV Daybreak. You can find Hayley on Twitter, Facebook and Pinterest.

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