We couldn’t be prouder to announce our charity partner with the hero’s that form the RIDBC (Royal Institute for Deaf and Blind Children) network, a brilliant organisation that means so much to our founder’s family! Read her story below and find out WHY we have chosen this charity!
By supporting our Hunter Events Wedding & Wine Festival you are also supporting RIDBC where every contribution counts, we’d love for you to donate directly via our donation link that is coming soon!
The RIDBC (Royal Institute for Deaf and Blind) network has been a part of our family for almost 7 years. This is our story...
We were ecstatic when our second born, a beautiful baby boy, arrived in September 2012. The first 2 days were exciting, as welcoming any new baby is, however, our happiness abruptly shifted to worry and concern when, Ashton, a mere 2-3 days old, failed his SWISH hearing screen. At the time we were assured that it was likely to just be fluid and that a repeat test would be conducted within a week. With so much concern and worry, we made enquires with a couple of audiologists, but they advised us to follow the procedure and complete the second hearing screening. We did that and sadly, yet again, Ashton received ‘refer’ as the result for his hearing screen. This increased our worry significantly and we were extremely anxious about our new baby’s health and wellbeing. We were told to visit Westmead Children’s Hospital within 2 weeks for Ashton to undergo an extensive 4-hour hearing test. To this day, those were the most difficult weeks of parenthood we have ever experienced.
The day arrived for Ashton to undergo his hearing test and for us to find out if our fears were about to become a reality. After hours of waiting and waiting, our buzzer rang indicating it was time to collect Ashton. We were taken to a consultation room and unfortunately, the doctor advised she didn’t have good news. The tears from both my husband and I could not be held back, as she began to tell us our baby had a sever level of hearing loss. She outlined that Ashton would face many challenges but assured us he would live a very normal life. Did we believe what the doctor was telling us? Absolutely not! We felt as though we had just been told our precious baby boy wasn’t perfect - our whole world came crashing down. We were offered support to assist in dealing with this unwanted news and it was provided in various ways. They gave us endless amounts of information, flyers and paperwork to read. This aided us in learning more about hearing impairment and what was in store for our little boy. They suggested we reach out to Australian Hearing and to early intervention service providers. As we left the hospital, I began by making appointments, initially calling Australian Hearing. We booked the very first available appointment for Ashton to get fitted for ear moulds and later, his hearing aids. The second call I made was to RIDBC (Royal Institute of Deaf and Blind). I’m not sure why, but for some reason they stood out as the organisation I felt was best for my baby boy. I’m an impatient person and was even more so in this situation, wanting Ashton to have the absolute best possible start, I insisted on a meeting far earlier then they recommended. And so, our journey began...
When Ashton was around 4 weeks old we met an RIDBC manager and Ashton’s early intervention teacher. We immediately felt at ease as they explained everything to us - what to expect, what life will be like for Ashton and how they would guide and support us every step of the way. They suggested fortnightly early intervention sessions, but I insisted on weekly.
The day Ashton was fitted with his new hearing aids was nothing short of amazing! As soon as they were fitted, it was evident to see a new part of life come alive in him. He could finally hear the world! The feeling for us parents was like no other and a moment I’ll never forget. Soon after that, our sessions with RIDBC started.
As our RIDBC journey began, we learnt more and more each session about how we could help guide Ashton to access the sounds he can’t naturally hear. We were committed to weekly early intervention sessions with the amazing Moira, who guided us down the right path and supported us emotionally, in order to continue improving Ashton’s abilities and not focus on his disabilities. As the first year of intervention progressed, we had many triumphs amidst endless struggles. Would he get picked on at school? Will he be bullied? Will he keep up with his peers? Will he get a career later in life? Will his hearing get worse? These were just some of the questions that consumed my mind, even still today.
We had always wanted four children but we were also worried that our next baby might too have a hearing impairment. The RIDBC were able to assist in answering our questions, and further genetic testing was conducted. The test results confirmed that our genes would result in a 25% chance of any of our babies having a hearing impairment. This didn’t deter us and we decided we would have the four children we desired - hearing impaired or not, we’d still love and support them endlessly.
In September 2014 Tyson, our third born, was welcomed into the world. Fear took hold and we felt unable to enjoy the excitement of our newborn until he passed his hearing screen. I pleaded to get him screened that day, however testing was unavailable not until the following day. That 24 hours was significantly painful. I was so stressed, which meant little Tyson was far too unsettled to have his hearing screened. They returned 2 hours later and unfortunately, he was still too unsettled. We had to wait again. The next day arrived, he completed the hearing screener and passed! His hearing was perfect and we were on cloud nine!
The first eight weeks of Tyson’s life were going well. Everything was as it should be. However, we soon discovered that his eyes were flickering and he was unable to hold focus. With great concern, we went to our local GP. Never have we had a concern treated so quickly. The GP himself called a Specialist straight away and booked Tyson an appointment for two days later. I asked, “What’s wrong? Can he see? Will he be ok?” He gave me no answers, stating that the specialist would see Tyson on Friday. I left with far more questions than answers and again, the tears and heartache could not be controlled.
OMG my baby can’t see! He’s blind, how can this be? He passed his hearing but now can’t see? What is wrong with his eyes? Again, these uneasy thoughts ran through my head for 48 hours straight. Impatient as I am, my husband and I consulted Dr Google and discovered Tyson met at least 3-4 symptoms of being classified as legally blind. Our Friday appointment arrived, my husband and I sat and waited yet again, with tears filling our eyes. It felt like our nightmares were beginning all over again. Blessed with another baby but embarking on yet another journey of unknowns and challenges. We were finally seen by the Ophthalmologist. Once more, our fears were confirmed. Testing indicated our precious baby boy had the condition: Bilateral Horizontal Congenital Motor Nystagmus. In plain terms, ‘wobbly eyes’, which meant his eyes flicker left and right. He was diagnosed with a moderate vision impairment. At the time, we were told he will never play sports, never drive, will have significant challenges in life, needing constant therapy and support. We were told there was nothing that could be done to fix Tyson’s condition, only that we could assist him to learn to work with his vision impairment, as glasses won’t help. We were told that RIDBC could assist when he reached 1.5 - 2 years old, when his eyes had further developed. During Tyson’s initial years, we followed some brief suggestions and attended many vision related appointments.
When Tyson was around 18 months old, we welcomed our 4th baby, and third son, Lleyton. Another charming baby boy, the smile of complete happiness couldn’t be taken off my face, my family was complete! While the thought of hearing or vision impairments lingered in the back of my mind, I did my best to avoid those thoughts and focus on our family. The whole nine months of my final pregnancy, all I could think of was will this baby have an impairment? Vision? Hearing? As soon as he was born, we couldn’t help ourselves and began clapping to see if he reacted to sound. He seemed to react well which kept us at ease. We knew it was too soon to see if his eyes were wobbly but it was a long two days wait until we could test his hearing. The nurse knew our history and as the testing equipment began taking too long to get results, I knew what was coming. Our lives came crashing down for the third time. Shortly thereafter, Lleyton’s first screener test resulted in ‘refer’. Very soon after, the second test displayed ‘refer’. I simply couldn’t hold back the tears, knowing there was no way that this was just fluid. The feeling of happiness of my completed family was ripped away and all I could think was, Why? Why me? Why us? Will it be a severe impairment like Ashton? How little / much can Lleyton hear? At the time we received the news, my dear Aunty Maria & Cousin Amy had come to meet Lleyton. Instead of visiting what should have been a happy occasion, they comforted me and reminded me that Ashton is fine; “You can handle this”. I’ll never forget that moment. My Mum visited soon after with Ashton, knowing how upset I was. Seeing Ashton reminded me that we’ve got this…we can do it! I’ll find a way to handle all of the appointments for our three boys and meet every need associated with their disabilities.
After I pulled my self together, I called Westmead Children’s Hospital. Due to our previous interactions, I explained the results and pleaded with them for the earliest appointment and they obliged. I explained to them that I needed to know what level his hearing was at and wouldn’t be able to sleep or rest until I knew. I then called Australian Hearing and booked Lleyton in to be fitted for hearing aids. They said to me, “Louise he’s not diagnosed yet”, but I knew he would be. They reluctantly made a spot available knowing our family history. I then called Moira at RIDBC and booked in his first early intervention session. The following week, Lleyton was diagnosed with a moderate hearing impairment. This time around, I had already accepted that he had hearing loss and the news of it being moderate and not severe was a blessing in disguise. Lleyton was the youngest child in Australia fitted with hearing aids and the youngest baby in Australia to begin early intervention with RIDBC and so our hearing journey began all over again. Around all of this happening, Tyson had just began early intervention for his vision impairment. As it stood I had my eldest child, Eva, in speech therapy, Ashton enrolled in weekly early intervention with RIDBC, weekly speech therapy and endless Australian hearing appointments, Tyson was also engaged in weekly vision early intervention, speech therapy and vision appointments and ongoing tests, and Lleyton’s early intervention began weekly and again endless Australian hearing appointments as well as what felt like never ending medical appointments.
Throughout our 7 year journey with RIDBC, they have been nothing but supportive and have effectively guided us with our three boys. Without this support and guidance, our boys wouldn’t have had the start in life that they needed and deserved!
7 years on, Ashton still has significant challenges with behaviour, communications and learning abilities but RIDBC have been there every step of the way. Our other two boys are faced with daily struggles and Tyson is so injury prone, he recently spent 6 weeks in hospital with a broken femur. With over 10 specialists’ appointments each week, we often get asked: how do we do it? My first response is we don’t have a choice, we just do it! It’s our life. What we have is a blessed bunch of crazy, normal kids that keep us extra busy. Secondly, coffee and wine! Oh how much it’s needed some days! The systems, control and routine also go a long way but, mostly it’s the support from our community and more importantly RIDBC.
I cannot thank the amazing ladies that have supported us all including but not limited to; Moira (Teacher of the Deaf), Charmaine (Teacher of the Deaf), Melissa (Vision impairment educator) all of whom are Sydney based. It was extremely hard to leave these amazing ladies when we moved to the Hunter region. With the help of Wendy, the Hunter RIDBC manager, we transferred our files to the Hunter group. The team couldn’t be more helpful and accommodating to our needs. They support my three boys and are as flexible as possible in working around my work commitments and our crazy schedule. When we relocated our family, we met the amazing Tracey (ToD for Lleyton) along with Yas (ToD for Ashton) and Trish (Vision educator for Tyson).
The RIDBC here in the Hunter, helped guide us with our sons’ education and chosen school and have seen our boys weekly or fortnightly for what now, seems like forever.
Early 2019 Lleyton shifted to Sylvia, a ToD, and he has continued to blossom. We have been blessed to meet and work with an amazingly supportive team of heroes and I cannot express the difference they have made to ours and our children’s lives. Our journey has also allowed us the opportunity to meet many amazing strong families experiencing the same challenges and the love, care and compassion RIDBC has for its’ families, is second to none. This charity, for every reason, is so significantly close to home and I would love to see so many children who are affected with hearing and vision impairments get the support offered by the RIDBC. I honestly have no idea where our children would be and what little support, they would have access too if we had not found this organisation. So, when you support our event you are also supporting an amazing charity that has changed so many lives, and continues to change lives in the most positive way.
You are most welcome to donate directly to our fundraising goal via the link below.
Many thanks for reading our story and the reason WHY we are so passionate about this amazing charity please donate via the Donate Today Link above.
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