Tag Archives: global developmental delay

Brody, Me and Global Development Delay



Laura is mother to 5 year old Brody who, despite having lots of health issues, has no definitive diagnosis. Laura writes about their journey as a family in her blog Brody, Me and GDD. In this blog post, Laura explains their journey as a family.

“Our beautiful Brody entered the world just over 5 years ago. He passed all of his newborn tests and was a really content and happy baby. I was completely unaware of undiagnosed genetic conditions back then and the journey we were about to take together. He was, and still is, is a total joy (forgetting about when he has a tantrum of course!).

I began to notice that he wasn’t developing typically when he was a few months old. A classic case of mother’s intuition coupled with all of the baby and toddler classes I signed up to.

First there was Water Babies, where all of the other babies looked ahead when they were placed on their tummies and held underneath their chest in the water. Brody struggled to keep his head up at all. I’d go back to the changing room afterwards amazed at how all of the other mums would let their babies sit on the hard floor with a towel wrapped round them whilst they got dressed. Not scared of them falling back and hitting their heads at all – because they didn’t fall back.

Then there was Rhythm Time where all of the babies babbled and waved on queue. As the months went by they were able to perch on their mum’s knees with ease and understood to go and get their “rhythm sticks” out of the basket and when to put them back. I’d wedge Brody in-between my legs so that he was well supported and the woman who ran the class would kindly pass me our rhythm sticks. More often than not, I’d swallow the lump in my throat as another child took pleasure in taking ours back to the basket afterwards.

Next up was Toddler Sensory. The last class I put myself through. Where all of the toddlers were able to walk along the obstacles, understand the basic games, attempt to sing along to songs and eat the snacks without gagging or throwing up.

Honestly, those baby and toddler classes were heart breaking because the worry back then was unreal. One of the hardest stages of this journey was when I just knew something wasn’t quite “right”, but family, friends, and health professionals tried to convince me otherwise.

He was “just slow” and “a typical boy”.

And the constant vomit that we experienced on a daily basis and inability to eat solid food was just reflux. Food aversion and delayed speech? Apparently also refluxes fault.

Then just before Brody turned two, he had a cluster of seizures and was hospitalised for a few days. It was a pivotal moment for us as a family. The health professionals began to take notice and I was told he had Global Development Delay. We had no answers, but a list of new people in our lives – paediatricians, an OT and a physiotherapist, to name but a few.

Lots of parents have similar journeys and tests go on to reveal a diagnosis. However, our journey has been one that’s lacked answers. What we do know now, a few years on, is that Brody has a learning disability, autism and epilepsy. He also has low muscle tone and hypermobile joints. But Doctors can’t find a unifying diagnosis to explain his disabilities and symptoms so he remains primarily undiagnosed, despite lots of tests.

We are part of a genetics study called the DDD (Deciphering Development Disorders) study, but this may not bring us answers and can take years to get results. I’m already knocking on genetics door to get us on to the 100,000 Genomes project, but of course, it’s never that straight forward. We’re on a waiting list and apparently it’s “amber”.

We are living in limbo.

But I know we’re not alone thanks to a charity called SWAN (Syndromes Without A Name) UK. Amazingly, it’s estimated that 6000 children are born every year in the UK without a diagnosis to explain their disabilities. And many of these children remain undiagnosed into adulthood.

We may never get a diagnosis.

That’s not easy to come to terms with. I love Brody with all my heart and I know that everything happens for a reason. But sometimes I wish I knew what that reason was. No diagnosis means no prognosis after all. Still, having others to talk to who can relate really helps. It can make you feel less isolated in a world of unknowns.

SWAN UK is the only dedicated support network for families of undiagnosed children in the UK and it’s so important to me that other families know that it exists.

The mum who is currently attending the baby and toddler classes, noticing gaps in her child’s development and the difference between them and their peers.

The mum who’s told everything is “just reflux”.

The mum who’s told that boys are “just lazy”.

The mum who is knocking on doors but not yet being heard.

The mum who’s just heard the words Global Development Delay in a white walled Doctors room, or a more honest “we don’t know”.

And the Dads too of course!

I want them to know as soon as possible that they’re not alone. I wish I’d known that sooner. It may not change the path that you’re on, but it will definitely help you on the journey.

To find out more about SWAN UK visit www.undiagnosed.org.uk or email joinus@undiagnosed.org.uk.

And if you want to follow our journey, you can find us at Brody, Me & GDD on WordPress, Facebook and Twitter“.

Don’t forget you can also give our freephone helpline a call on 0800 328 1159 if you need help or advice, or visit our website.

Leah Makes Sense of Her World

The whole family!

The whole family!

“Leah turned 5 in February and she has a diagnosis of severe global development delay, vision impairment, hypermobile joints and autistic features. When Leah learned to walk just before she turned 4, it was a magical moment for us.

Leah lives with me (mum- Michelle), Dad (Mike) and brother Ashton. I’m not going to lie, life is hard and we live on a emotional roller coaster that has, at times, really tested us.  Leah is our world and she has changed our life and made us better people, but having a child with additional needs is challenging in so many ways. It makes every aspect of family life harder.

Leah has no sense of danger, you could say she’s on a level with a 9 month/1 year old’s understanding and is into exploring the world. But as she is 5 years old and growing fast, it can be very challenging.

Where do I start trying to describe our beautiful girl who is a mystery to so many? You really have to step into Leah’s world to work it out! Anything sensory, music, eating, water, light up balls and throwing things and exploring are the things Leah loves to do. Leah has no play skills other than playing catch with us but even then she will throw the ball away from us – normally into a narrow corner somewhere that we can’t get to! Leah is non verbal and as yet we haven’t been able to find anyway to communicate. She is good at taking your hand though and leading you to where she would like to go.

Leah attends a amazing school in Poole. They have really helped us, along with other professionals, to understand her world. We have become experts in learning through the senses!

Michelle and Leah

Michelle and Leah

Leah is our beautiful girl who has shown us how to parent in a different way. Our son Ashton is fantastic with his sister and we are so proud of him. Sadly lots of times we can’t always be the parents he deserves and that makes us sad.

Leah often gets frustrated with not being able to communicate but has learnt that if she pinches us she gets a reaction so unfortunately we get a lot of this at present. Screaming is another behaviour she has adopted.

I have had some fantastic support from friends and family but sometimes life can be isolating as taking Leah to peoples houses and going out can be so challenging. It’s hard not think ahead and how much harder life will be so we try so we just try and stay in the  present.

We are currently trying to get support from social care to see if we can get some respite. It’s not something I thought we would never do but we need to be strong to care for Leah and getting some days to recharge are what we sadly need. Unfortunately I think it’s going to be hard as so many cuts have been made.

We are in the process of adapting our house. Leah can’t get up and down stairs and all the lifting has given me a bad back. We are also putting gates in place to block off kitchen as Leah’s exploring just isn’t the safe in kitchen.

Overall we are happy, apart from some days (we all have them). Leah has taught us all to look at life very differently and become more understanding people. Leah has developed more than I ever thought she would and we pray she will continue to improve”.

Written by Michelle, Leah’s Mum.

Michelle recently attended one of our advice clinics run by Regional Officer Lilly Fahey. We hold lots of information and advice events throughout the year. Keep an eye on our What’s On page for the latest events in your area.