SEND Round-up: World Rare Disease Day & pushy parents

There’s been a lot going on generally over the past couple of months, including a fair amount of sickness in our household unfortunately. So I am delighted to be able to introduce you to a guest host for the round-up this month: lovely Ann from Rainbows are too beautiful. Please do pop over and visit her blog and follow her on social media – she posts frequently with thought-provoking posts and is one award-nominated blogger not to be missed! 

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We finally seem to be in for some brighter weather.  But whilst temperatures in the UK have been heading slowly up over the last month (it is a balmy 17 degrees as I write), it’s been a mixed bag of highs and lows for SEND Bloggers.

It was World Rare Disease Day on the 28th February and several bloggers shared valuable insights into their stories with a rare disease. Raisie Bay wrote about being one a million, or one in two million even.   This really resonated with many in the sector with Faith Mummy’s post about searching for others with the same rare disease as her son.  Inclusive Home blog says although they are ‘rare they are not alone’  and Hunter’s Life did a loving post on learning to live with MPS II.

The World of Gorgeous Grace got a bit political and covered the Rare Disease Day by also highlighting an interesting phrase by an MP with her post asking what being ‘really disabled‘ is? I entered the same arena when highlighting that the 30 hours of free childcare talked about in the budget might not be accessible to many children who have special educational needs.

And trying to find the right support for kids at school came up with a news article on recent YouGov survey of teachers. The reports suggested that Some ‘pushy parents’ are keen for their children’s behaviour to have a label but this meant that others with genuine needs are missing out on help. Instead of backing the idea that kids with special educational needs weren’t getting their support as it was going to misdiagnosed children, most SEND Bloggers had different ideas.

Sensory Sensitive Mummy explained why she thought of herself as warrior mum, not a pushy parent and ex-teacher, Someone’s Mum, said that labelling parents as pushy was ‘irresponsible and dangerous‘. Not So Ordinary Diary looked at the relationship between diagnosis, parents, teachers and clinicians, while Starlight Mackenzie wondered if the survey was one of teacher prejudice? It Must Be Mum asked ‘What should happen next?‘ in disagreements over diagnosis and Life with ASD and the Rest ran some of her own surveys and then created a linky of many of the posts on the subject in her post ‘Me, My son and SEND Labels.’

That’s all for this month, don’t forget to drop links below for next time. Have a good Easter.


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About Steph Curtis

Steph Curtis is mum to two girls and blogs at Steph’s Two Girls. She started blogging over six years ago after her youngest daughter Sasha was given a diagnosis of Autistic Spectrum Disorder (also called ASD or Autism). A buyer of toys and stationery in her pre-children life, Steph has now become a Trainer to help all parents of children with disabilities find support and information. Although ASD was the original diagnosis for Sasha, it is believed that she actually has a specific type of autism known as Pathological Demand Avoidance (PDA). Steph is keen to raise awareness of this condition and runs courses for parents to help with strategies for everyday life. Steph is on Twitter as @stephc007 and is a huge Facebook and Instagram fan.

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