A blog by Water Babies Mum and Teacher, Amber.
Water is a leveller, a place where everyone can flourish and have fun in a non-competitive environment. Swimming has a whole range of benefits for babies and toddlers with disabilities and learning difficulties and this National Baby Swimming Week we’re sharing Amber and Charlie’s story. By focusing on the achievements of your little ones and not their limitations, their confidence will grow and grow. Read on to hear about Amber’s experience of baby swimming with a little one with additional needs in her own words.
I’m Amber, a 28-year-old first-time mum to my son Charlie, who turned 2 in March 2025. Charlie has a variety of ongoing and undiagnosed medical conditions, as well as special educational needs. So far in his life, Charlie has been diagnosed with Beckwith-Wiedemann syndrome (BWS), mitral valve regurgitation, asthma induced by illness and exercise, and global developmental delays. He is also non-verbal, non-communicative, and is currently awaiting an autism assessment.
Welcoming Charlie
When Charlie was first born, we were over the moon with our baby boy and enjoyed our first night in the hospital as a family of 3. However, very quickly, he was admitted to the NICU with low blood sugar due to feeding difficulties and required NG Tube Feeding! The first week was a blur. My husband and I were able to stay together in the Neonatal Unit while Charlie was under the NICU Special Care being closely monitored, NG Tube fed around the clock and having tests done while awaiting an ultrasound of his heart to diagnose his heart murmur. After 8 days, Charlie was able to breast and bottle feed and had his ultrasound to diagnose his heart condition, meaning he was allowed to go home. Charlie was discharged from the NICU and we were able to start what we thought was going to be a typical journey of raising our baby boy.
As the months passed and Charlie grew older, he was failing to meet basic milestones like lifting his head during tummy time, rolling over, and reaching for toys. He was also continuing to struggle with oral feeding and his weight gain was poor. Charlie was being weighed weekly, and we became strangely used to seeing healthcare professionals. At this time, we raised concerns regarding Charlie’s enlarged tongue and struggles with feeding, however Charlie’s BWS went undiagnosed. We were supported by the infant feeding team and Charlie was able to maintain his weight along the 9th percentile. We found a good support network with our health visitor and attended regular clinics to monitor Charlie’s weight and his development. However, as he struggled to show progress and continued to miss milestones, his referrals to other services soon began.
By 6 months old, Charlie became known to the Physiotherapy Team and Occupational Therapy Team. By 9 months old, Charlie became known to the Speech and Language Team. Also at this time, Charlie’s respiratory struggles started, and he was a regular visitor to the GP, A&E and Children’s Ward, regularly requiring nebulisers and breathing treatments to help him overcome coughs and colds. This was a very difficult time for us as a family, as it was a very strange new world to us. Despite everything, Charlie was still only diagnosed with his heart condition but was suddenly on a variety of medications including different inhalers to reduce his need for hospitalisation.
Finding Answers
Charlie continued seeing specialist teams and his 1st birthday was spent in hospital with breathing difficulties, no different to how we spent most weekends throughout winter. At 12 months old, Charlie was unable to crawl, walk, talk, communicate or feed himself. Amongst many other areas of development delays, every question on his 1-year review paperwork was answered ‘NO’.
Soon the processes began for Charlie to be diagnosed with Global Development Delay as well as Asthma induced by illness and later induced by exercise. By his 2nd birthday, Charlie was under the care of the Senior Health Visiting Team, and it came as no surprise to us that he answered ‘NO’ to every question on his 2-year review paperwork. Following this review, Charlie was put forward for a paediatrician review (which has up to a 1 year waiting list) and Autism Assessment (which has a 3-5 year waiting list).
It wasn’t until over a year later, after our initial concerns regarding Charlie’s enlarged tongue, that in the summer of 2024 we met a doctor while Charlie was inpatient with RSV and the words ‘Beckwith-Wiedemann Syndrome’ were first mentioned. This was the catalyst for a yearlong battle of genetic tests, genetics appointments, reviews, sleep studies and many other appointments that led us to the diagnosis of Beckwith-Wiedemann Syndrome, finally getting us an appointment at Great Ormond Street Hospital for Charlie to join the waiting list for tongue reduction surgery.
The Impact
For Charlie, he has always been so happy and most of the time unaware of the difficulties he faces. Charlie does not know he’s any different and therefore we are lucky that his diagnoses do not have a negative impact on his little world! Charlie thrives on a routine and with familiar caregivers including his nursery setting. He loves day to day life; he loves being outside and going to nursery every day! He especially loves the water, bath or swimming pool – Charlie loves to splash!
For us, Charlie’s medical journey has taken a massive toll on our relationship, our marriage and our ability to feel like successful parents. We have struggled to feel heard when raising concerns, having had to follow our instincts and continue to push forward for answers and for support for Charlie’s medical and individual needs. The hardest thing as parents of a child with any medical or additional need is being heard and not just dismissed. Charlie is currently developmentally estimated to be similar to a 9–12-month-old baby. This is difficult for us, as we expected Charlie to be running around with peers, getting into mischief, being a typical 2-year-old having tantrums! We face a very different day to day life to a typical family and that’s where swimming has been amazing for us!
Finding Water Babies
We enquired with Water Babies very early on after Charlie’s discharge from hospital. I was keen to join infant massage, baby sensory and baby swimming classes. I am a strong and keen swimmer, meanwhile my husband is not. We were determined to enrol Charlie in swimming lessons, for the importance of both a bonding experience and the necessity of learning a life skill. Water Babies came highly recommend to us by our good friends, who swam with Water Babies Ipswich with their children. Charlie started lessons in June 2023 at Thomas Wolsey Hydrotherapy Pool! The pool was warm and calm, there was space for family to watch, the changing rooms were spacious and clean, and the location and timing were perfect for us! Charlie loved the water, often splashing about and falling asleep by the end of the lesson. We knew we had made the right decision; Charlie was happy, playful and relaxed during every lesson.
Charlie was able to understand the word association used during the warm up and throughout the lessons. He was a good underwater swimmer from day 1! We were so pleased to see him able to move freely and with his own purpose. Charlie was known for splashing during the lessons and is still splashing his way through lessons over 2 years later. Attending Water Babies took away the stigma and judgement we often felt at baby classes on dry land! Charlie was developmentally different from other babies but at swimming it didn’t matter – he was a water baby and a super star! There were no barriers to Charlie being able to swim, we followed the guidance of his healthcare professionals and Water Babies were approachable and supportive throughout.
Charlie’s Swimming Journey
Charlie loves his classmates and has made friends for life! As Charlie has grown older, his development delays have meant that he’s only now learning to walk and has no means of communication, unable to talk or use sign language. Therefore, skills like safe entries into and exits out of the water, look different for Charlie. The progress has been slow but very well supported. The lessons are adapted and tailored to Charlie’s needs, as well as every other swimmer in our class! At times, Charlie needed more support, often using Team Pearl swim positions or techniques. We have been encouraged and supported to take each lesson at Charlie’s pace through his journey through Team Pearl, Saffi and now into Team Echo!
A turning point in Charlie’s swimming journey was when he started wearing his glasses aged 1, and we were encouraged and supported to bring them to lessons, even being advised on the best straps to use while in the pool. His glasses meant he was finally able to see the variety of toys available! Inky will always be Charlie’s favourite fish.
When Charlie developed a strong dislike for the pool noodles, I was able to work closely with his teacher and the office, for tips, tricks and alternatives to build on his swimming techniques and skills, so he still never missed out! During lessons his classmates enjoy jumping in and can stand on poolside or on the mat to do so. Charlie enjoys splashing in while seated, while he develops his standing skills on dry land first! His classmates are so supportive, often giving him high-fives or a pat on the back when needed. He’s experienced a few different teachers, and every single one took the time to ask about Charlie, how best to support him and me during lessons, and were always approachable and friendly. Charie has missed lessons at times due to illness and hospital visits, but catch ups lessons were available, and our teachers have always been mindful to catch us up on anything missed.
Charlie’s biggest swimchievement was Splashathon 2024, completing the challenge of chasing a ball across the pool. Up until this point, Charlie struggled with his hand eye coordination and took time to warm up to activities and chase toys around the pool. However, during Splashathon, a year after his first lesson, he reached out and grabbed the ball for the very first time! It was a big moment for us and a huge achievement making it extra special!
Becoming a Water Babies Teacher
In August 2024, I saw a job advert by my local franchise on Facebook. I studied Early Childhood at University, and as a swimmer and Scuba Diving Instructor, I couldn’t pass up on the opportunity to teach something I was so passionate about! I was also keen to raise awareness and advocate for children like Charlie with any additional needs. There should be no barrier to learning to swim and Water Babies has an ethos I wholeheartedly support!
I applied for the Saturday morning position, and after 7 months I was fully qualified to start teaching my own classes in February 2025! I love teaching my swimmers on a Saturday morning, it’s the best way to start my weekend and I love sharing my personal experiences with my classes. It’s a pleasure seeing my swimmers achieve their own individual milestones in the pool and reaching their goals. The bonding between little ones and their carers is beautiful and carries over out the pool! I have been extremely well supported throughout my training and now my teaching, especially as a first-time mum with a young child with complex needs like Charlie’s!
Sharing Advice
Firstly, my advice to any parent, is to look into the benefits and importance of your child learning to swim.
It’s never too late to start! It’s never too late to be a water baby!
Swimming lessons save lives, and Water Babies teach your little essential safety skills and techniques to keep them safe around water.
Secondly, my advice to any parent who is unsure about their or their little one’s additional needs is to talk to your local Water Babies Franchise! The first step is communication, because the door is open and the support is available. I see many children join our Water Babies lessons at a variety of ages and abilities, and there’s always room for you!
You may find there are limitations on dry land, and your child may seem different, but once you are in the pool and swimming around, the difference will disappear, and you’ll be able to just enjoy yourself. Nobody is watching you and your little one, besides your teacher who is always on hand to provide support! Lessons are so interactive and fun that you’ll be fully immersed and able to experience your child’s achievements. Every child is individual and unique, and this is something Water Babies recognises and understands!
