Families with disabled children often say that they’re not able to take full advantage of what Scotland has to offer because of worries they have about how accessible the places they want to go are for people with disabilities. Read Brody and Laura’s story below to find out more.
My seven-year-old son Brody is an amazing, happy-go-lucky little boy. He likes music and dancing, looking at books, being on the beach and chasing bubbles. He really just loves life. And we love him.
Brody was born with a rare genetic syndrome. One so rare that, to date, he remains undiagnosed. We have been recruited into genetic studies called the Scottish Genomes Partnership (SGP) and the Deciphering Developmental Disorders (DDD) study, both of which seek to find genetic answers for his disabilities. Brody has a learning disability, epilepsy and autism as well as some difficulties with walking.
When Brody was born, I was unaware that he had a disability. He passed all of his newborn screening tests and Doctors had no concerns. However, he was not meeting all of the milestones in the Health Visitors Red Book (a book that I took a huge disliking to at the time!). Despite this, his Health Visitor did not appear to be worried. However, mothers instinct told me that he wasn’t a typical child for his age. I constantly worried about him. I dreaded toddler groups and classes because his differences were obvious and you know what they say – comparison is the thief of joy. I knew deep down that Brody was different. All the while, family, friends and health professionals were telling me he was “just a typical, lazy boy”. Of course, this wasn’t the case.
Brody had severe reflux and was sick a lot. He struggled to eat any solid food. He had huge sensory issues. He was slow to walk and wobbly on his legs. He couldn’t (and still can’t) talk. However, despite all of his struggles, he was the most delightful, happy baby.
The turning point for us was in September 2013 when Brody had six seizures and was admitted to hospital. From there, health professionals really started to take notice. It was a bittersweet time. I was relieved that we were finally on the path to getting the right support and what I thought might lead to a diagnosis. I didn’t feel like the neurotic first-time mum anymore. But I was sad that the future I had imagined Brody having when I first held him in my arms was not to be and I worried what the future held for him.
A saving grace for me was meeting other mums who had children with disabilities. You can’t beat advice from people who have ‘been there’ and ‘get it’. Face to face and online – the support of other parent carers is invaluable. Through online groups, I learnt about the charity SWAN (Syndromes Without A Name) UK.
SWAN is the only dedicated charity that supports families who have undiagnosed children in the UK. It was through them that I discovered that 6000 children are born every year without a diagnosis for their disabilities. Until then, I never imagined that we might never get a diagnosis for Brody. That’s something which has taken a long time to accept. Sometimes I still struggle with the unknown. After all, no diagnosis means no prognosis.
Brody has changed us all for the better. He’s made us realise that its the simple things in life that are important. His happiness is contagious. He has also brought out the campaigner in me. Accessibility issues have become increasingly apparent as he has grown and can really limit the life of a disabled person and their family.
Changing Places Toilets
One issue that I am particularly passionate about is the Changing Places toilet campaign. Brody is doubly-incontinent and wears nappies. Without Changing Places toilets – a 12m2 room with a peninsular toilet, an adult-sized, height-adjustable changing bench and ceiling track hoist – I am forced to change him in heart-breaking places, which are unsafe, unhygienic and hugely undignified, like our car boot or a public toilet floor. This issue affects so many disabled people, as well as their carers and families, who are often isolated from their communities and unable to travel. It’s an awful reality. I mean, going to the toilet is a basic human right!
Can you imagine going somewhere for the day if there was no toilet?
Can you imagine lying on a toilet floor?
Promoting A More Inclusive Society
PAMIS (Promoting A More Inclusive Society) founded the Changing Places toilet campaign and lead the campaign in Scotland. In 2017, after a few years of campaigning, I started working for them one day a week. I feel incredibly lucky to have a flexible, part-time job for a charity and campaign that I respect so much. PAMIS and campaigners are working hard to increase the number of Changing Places toilets throughout Scotland. To date, there are only 187 in Scotland and a total of 1263 in the UK. When you consider that there are more toilets in Wembley Stadium that there are Changing Places toilets in the UK, it really puts this figure into perspective.
A few of the places that I am proud to have encouraged to install facilities include Blair Drummond Safari Park and the MacRobert Arts Centre at Stirling University. It’s fantastic that these venues recognise the importance of being inclusive and understand the business benefits it can bring. Not only is it the right thing to do morally, it can increase visitor numbers, dwell time and revenue. Being accessible and inclusive really is a win-win for everybody.
I wouldn’t say that life is easy as parent carer. There have been many battles – a lot that are unjust and unfair. If I could take away Brody’s struggles and make life easier for him, I would in a heartbeat. However, we would never want to be without him. He has taught us so much and continues to do so. He is perfectly imperfect and we are so proud that he is our son.
There’s a quote by Mandy Hale, that I love and which I think is so completely true – “happiness is letting go of what you think your life is supposed to look like and celebrating it for everything that it is”.
Brody is who he is meant to be – our beautiful boy.
And we are who we are meant to be too – his parents.
Find out more in our guidance: Supporting disabled children, young people and their families