Bless Her Heart: Heart Surgery and Beyond

Reposted from 2013

This morning Natty had the first check-up with her cardiac consultant in an incredible 2 years.

That she felt confident enough to leave a gap of 2 years since last covering Natty's chest in jelly and staring silently and seriously at her heart's image beating on a screen whilst Natty initially wriggled then slowly settled to watch CBeebies on a TV on the ceiling, whilst I stroke her forehead as she lay on my chest, speaks volumes. 

But why did I feel so nervous last night? Why couldn't I sleep?

Through Our Eyes: A Tribute to Daisy Rose Nimmo

Dedicated to Daisy Rose Nimmo.

Daisy Rose Nimmo 2004 - 2017 @Steph Nimmo
Was This in The Plan???

The SEN world were shocked and saddened to hear of the passing of Daisy last week. This beautiful and vibrant young daughter of Stephanie Nimmo has changed many lives more than she could ever know. 

Steph has been a constant and vital campaigner for change within the learning disability world and healthcare over the years. We all felt we knew Daisy and her family through Steph's powerful blog Was This in the Plan?

Steph wrote "Today our beautiful, feisty, determined girl, Daisy Rose, took her last breath and is out of pain and dancing in the stars with her beloved daddy."

WIN: A Home Education Notebook by Ross Mountney

I am absolutely delighted to be able to offer one copy of the latest book by online friend and highly respected blogger, author and home educator Ross Mountney. To be in with a chance to win A Home Education Notebook, published by Birds Nest Books, enter via the rafflecopter widget at the bottom of this post. 

Ross Mountney's latest book A Home Education Notebook

Ross has kindly agreed to write a guest post for Downs Side Up for those of you who may be considering teaching your child yourself. Her advice will encourage and inspire as it did when we were looking for information about flexi-schooling Natty. You can read our review of her previous book Who's Not in School here. 

Author and home educator Ross Mountney

It’s really lovely to pop back to Hayley’s blog and talk to you about home education.

We were first in touch when Hayley wanted to know more about it and take a more flexible learning approach to Natty’s education in respect of her needs at the time.
Home education offers a wonderful opportunity to address a child’s particular needs, whatever they may be, because of its incredible flexibility.

My Brother Geoff: Born with Down's Syndrome in 1961

Victoria Lewin author of books for young carers such as her daughter, and project lead of charity Caitlin's Wish contacted me recently about some training work she is doing. 

As we got chatting the rather heart-breaking story of Victoria's uncle Geoff, who has Down's syndrome emerged. His story is somewhat typical and although it has a happy ending, the realisation that attitudes, support and early intervention have changed greatly since the 60s is emotional to read.

My Brother Geoff 

I was 11 when my little brother was born in 1961.  My mum was 41 and he was her third child (both now known risk factors but we didn’t know that then).  His father was diagnosed with leukaemia shortly before he was born and died when he was a few months old.  So it was just me, Mum and Geoff (my older brother had left home). 

Nurture Yourself: Our MOT Self-Care Checklist

Every so often little reminders come along that it is so very important to look after ourselves.

Nurture yourself with our personal MOT checklist

Being a parent is tough and being a carer adds another layer of stress and tiredness but below are some simple tips for nurturing yourself. 

Disability Digest: 5 Fave Books I'm Reading

One of the advantages of being a blogger is that I get to find out about lots of wonderful books. Some are sent my way to read, review and share with the world, others catch my eye and I buy them to support our close-knit SEN writing community.

This month I have fiction, a personal journey, incredible illustrations, an inclusive calendar, and a jolly useful handbook to tell you about... so here's what's on my desk at the moment.

Disability Digest: 5 fave books I'm reading

The Closest of Friends: Brandon's Poem by Sister Sadé

I was contacted by a very proud sister this week who wanted to share a poem she had written for a very special man in her life.

That man wonderful is Brandon and he is Sadé's brother.