BritMums SEND Round-up: Testing times

special needs blog posts sliderWelcome to the June edition of the #SENDBritMums round-up and thank you to all of you who linked your posts in May. Many of you incorporated poems into your blogs.

Attachment Mummy wrote a very poignant poem My Weird Kid about her daughter Laura, with the overriding message that:

My kid isn?t weird, she?s wonderful,

My kid is perfect, just as she is.

Little Mama Murphy added What I Remember, another beautiful post about the uniqueness of all children, and what they bring to their families and communities despite the challenges they face.

I remember laughing,
I remember feeling happy,
I remember seeing the joy in each moment,
I remember the glow of love and pride,
I remember feeling blessed.

Special Needs Jungle is collecting poems at the moment for a feature, so do send Tania Tirraoro your incredible talent and heartfelt words.

 

June has seen #PortageAwarenessWeek. Portage was a true lifeline for us when Natty was small, a friendly face and a chat, plus lots of specialised toys and activities to help Natty develop really were an essential part of those early days when we were unsure and worried. The National Portage Association want us all to Pop for Portage, so ?pop? over to their site and join in if you can.

 

It?s also Learning Disability Week #LDWeek15, organised by Mencap during June, and those with a learning disability and their families will be talking about what life is like for them. Actress Sarah Gordy started the week with a bang, writing this powerful piece for the Huffington Post entitled People with a Learning Disability aren?t from Mars. She talks about employment issues and being a self-advocate, saying;

I know I?m very privileged as someone who has been in the media and can help tell others about learning disability. But I don?t want to be speaking alone. I hope that Learning Disability Week gives a chance for lots of other people, who might feel ignored by the public, to tell their stories and be given a chance to make their own dreams come true, no matter how big or small.

Our eldest daughter Mia Goleniowska also wrote a post, describing what learning disability means for her as an 11 year old, and what?s it?s like to have a sister with Down?s syndrome. You can read Big Sister Mia Describes What a Learning Disability Is over on Downs Side Up. Mia says;

Sometimes it?s hard to understand what someone with a learning disability is saying, but I?m used to it now. You just have to stop and listen more.

June has also been a ?testing? time for many of us, as the new sensitive screening tests are debated in the media and we listen to discussions about whether it is ethical or moral to terminate babies based solely on the fact that they are like our own. I think the time will come when they find the autism gene and then this debate will explode. 

Alison Morley wrote A Test? on her blog Downright Joy, another beautiful poem, pointing out that no test can tell us the joy our children will bring us.

Is there a test for you?
Is there a test to tell me how much joy you will bring?
Is there a test to tell me how much you will make me laugh?
Is there a test to tell me how proud I will be when you hit each milestone?

And Paul Critchlow of Orange Juice Flavour Sky asks the most important question of all, just what on earth are we afraid of, in his brilliant post Who?s Afraid of the Dark? It?s not Down?s syndrome we fear as a society, but the unknown, what lurks in our imaginations under the covers of that label.

Please do add your comments, thoughts and posts below. 

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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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