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Friday, 31 March 2017

SEND Stars 12

Time to introduce you to another blogger in my SEND Stars series.

Everyone who has taken part in this series has a life which involves SEND (Special Educational Needs and Disabilities) in some way; some of them choose to blog about it a lot, some a little but we all share an understanding of how different life can be.

If you have time to pop over to the main blog or Facebook page, and read or even leave a quick comment, I know it will be much appreciated.

So here we go with number twelve..... this lady is a huge force for change and seems to have endless energy and passion!


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Who are you and how old are you? 

I’m Laura Rutherford and I’m 32.

Who else is in your family and what are their ages?

My hard-working, supportive other half and our son Brody (5 in January) and daughter Sydney (1).

Which members of your family have SEND (Special Educational Needs and Disabilities) or additional needs, and what are those needs?

Brody. He is primarily undiagnosed so we are members of the SWAN (syndromes without a name) community. We are part of the Deciphering Developmental Disorders (DDD) study and have been for 3 years. We hope that this will bring a diagnosis, although I’m not holding my breath…

Brody has global development delay, learning disability, epilepsy, autism, hypotonia and hypermobility. He is completely non-verbal and can use a handful of Makaton signs.

Is there an official diagnosis and if so, what is it, at what age was it given and by who?

Whilst we have no primary diagnosis, Brody was diagnosed with epilepsy by his neurologist when he was 3 and received the ASD diagnosis this year, aged 4 by his paediatrician. Learning disability seems to have crept in as a vague diagnosis according to a recent letter.


If no diagnosis yet, have you seen any professionals with your concerns?

We are in limbo, like many other SWAN families, with regards to a primary diagnosis. If the DDD study doesn’t pull anything out of the hat, we hope to join the 100,000 Genomes project.


Can you list the job roles of everyone you've been involved with on your SEND journey so far?

Paediatricians, Neurologist, Dietician, Speech and Language Therapist, Occupational Therapist, Physiotherapist, ENT Consultant, Health Psychologist, Educational Psychologist, Orthoptist, Podiatrist, Audiologist. They’ll be someone I’ve forgotten. A lot of people, but no way near as many as lots of families I know, so we are fortunate.

Are your children in school (if so, what type of school) or home educated?

We’re in the process of applying at the moment. Paperwork is done – awaiting decision *bites nails, drums fingers, waits impatiently*

What would you like others outside the SEND community to know about your child's condition?

6000 children are born a year without a diagnosis to explain their disabilities and some remain undiagnosed. This isn’t an easy concept to get your head around. No diagnosis often means no answers, which can be frustrating and isolating at times. Thankfully SWAN exists so I know that there are a lot of other families in the same shoes.


Tell us a fact or funny story about you or your life which is totally unrelated to SEND.....

Oh man I am rubbish at ice breaker questions. I’m a massively boring home body. Grew up in Essex, moved to Scotland when I was 16. Total social media whore. I wish I was more exciting!

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You can find Brody, Me & GDD over at the following places; please visit and make her day!

Facebook - Brody, Me & GDD
Twitter - @LauraRutherford

Laura is involved with Changing Places - find out more at My Changing Place 

She is also campaigning for bigger nappies in supermarkets https://www.change.org/p/supermarkets-to-sell-or-make-larger-nappies-for-children-with-additional-support-needs



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