Being mum to Quinns inspired me to start this blog 5 years ago. Quinns is now an 8 year old boy. Since the beginning his love of trains has moved through helicopters and rockets to Star Wars and Avengers. All this time and above all else he adores his 12-year-old Big Sister.

He’s just like any other little boy except that he is disabled. Until he was 7 we thought he had quadriplegic cerebral palsy but during a dystonic crisis we discovered he actually has a very rare genetic movement disorder called GNA01. 

He needs full support in the wheelchair he uses to get around and shows us how clever he is using his eye gaze computer. He likes to make his feelings known and is well known for his amazing smile!

The blog was originally called ‘Quinns, trains and cerebral palsy’ but after we discovered his new diagnosis it was time for a change and it became ‘Quinns, trains and changing places’ It’s a place to share our everyday family life, the challenges we face and hopefully raise some awareness of the issues surrounding children with disabilities. Before Quinns came along I really had no idea

I have written articles or stories have been written about Quinns for the following websites: 

• Teach us too ‘Sharing Stories Quinns’ – http://www.teachustoo.org.uk/quinns/
• Scope ‘Communication without Words’ – https://community.scope.org.uk/discussion/63833/communication-without-words
• Rollin with Mama ‘Campaigning for a roundabout’ – http://rollinwithmama.com/campaigning-for-a-roundabout/
• A24 Scotland ‘The Start of a journey’ – https://a24scotland.wordpress.com/2019/11/26/the-start-of-a-journey/
• A24 Scotland ‘A special School’ – https://a24scotland.wordpress.com/2020/11/11/a-special-school/
• Edinburgh Children’s Hospital Charity – https://echcharity.org/quinns-story/
• Ronald McDonald House Charities – https://rmhc.org.uk/stories/our-stepping-stone-towards-home-quinns-story/
• Edinburgh Live – https://www.edinburghlive.co.uk/news/edinburgh-news/young-edinburgh-patient-diagnosed-extremely-27038128

You can find Quinns’ short films on the Speech Bubble YouTube channel:

I have recently found reading very helpful. Here are some of the books I have read:

• Eye can talk by Jonathan Bryan
• Raising a rare girl by Heather Lanier
• The skies I’m under by Rachel Wright
• The Cracks that let the light in by Jessica Moxham

• Tender by Penny Wincer
• What the **** is normal? by Francesca Martinez
• Being Heumann: An Unrepentant Memoir of a Disability Rights Activist Judith Heumann
• What can a body do? How we meet the built world by Sara Hendren