Our Story
On 26th July 2013, our beautiful baby girl Ava was born. We were excited to be leaving the hospital with our beautiful baby girl and were looking forward to our future together. Ava was happy and healthy and was developing really well in all areas of her life - she learned to walk at eight months and was fully communicative saying words like Daddy, Mummy, ball and strawberries. However,
between the ages of 15-18 months, Ava lost some of the first words we learned together and started to regress. At the age of 2 our world collapsed with the news that our daughter had Autism and was non-verbal and we were terrified. We had no idea what autism was let alone how this could have happened but we were determined to do everything we could to bring our baby back to us. Action
We educated ourselves on Autism by researching the subject day and night. I watched videos, read scientific papers and read almost every book I could get my hands on. I battled with the health services to gain access to critical early intervention as I knew this was the best chance for Ava to reach her potential. However, progress was slow due to a lack of resources and long waiting times. Therefore, we decided to self-fund this support ourselves which included speech and language therapy with an autism specialist and sound therapy. We paid for as much early intervention as we could afford which placed a heavy financial burden on our family at the time. With lots of pushing we did manage to secure a specialist nursery placement in a communication unit as well as additional support from Autism Scotland. Throughout this time, we were thrust into multiple roles, as Ava’s advocate, teacher, speech therapist and parents whilst juggling busy careers to help finance the additional therapies she needed to her reach her potential. All the while our own mental and physical wellbeing was deteriorating under the pressure of the diagnosis and all that this meant for Ava and our family. Our expectations of parenthood had been completely shattered and both my husband and I were grieving for the life we had within our grasp but so quickly lost. Grief and Loss
In the early days, we focused all of our energy into securing the right support for Ava in the hope that this would make everything better. Although, we soon realised this was not happening as the feelings of grief and loss remained. Every milestone brought about new challenges, difficulties and at times disappointments and we were just at the beginning. We struggled to cope with the silence and would drink a few glasses of wine at night to numb the pain while masking signs of depression from the outside world. We both knew we had to make a change, so we reached out to some established Autism charities for support. To our surprise there was very little support available for the parents and families coping with similar challenges. The majority of support available was geared towards supporting the individual with autism and or training for the parents to learn more about autism at a cost. All of this was useful but it was not kind of support we needed as new parents struggling to come to terms with an Autism diagnosis. After meeting with other parents it became clear that there was a massive gap in support for parents and families so we decided to do something about it. I contacted a Business and Life Coach and by coincidence his Grandson also had autism that was also non-verbal. This coaching partnership has provided a great source of strength to me. We worked to develop personal growth plans to help me regain my emotional strength and daily happiness. My health and personal fitness is now a daily priority and I have replaced unhelpful habits with new ones that serve me well. I work out five times per week and I am currently training to take part in my first ever endurance event. I study personal growth strategies daily to master my emotions and I am now setting big life goals that are stretching and will help me to make a difference in the lives of others. Build it and they will come
I have established a charity called Avalon Parental Support and Respite Services to provide support to parents and families caring for children with autism. The charity is named after my daughter Ava as she has provided me with the source of inspiration and strength to do something meaningful to turn this difficult experience into an opportunity to help others. It is through providing this support that we hope Avalon can be the light that shines brightest for parents and families in their darkest and most challenging days. Covid has delayed out plans for a avalon centre so we have spend donations of developing a wellbeing programme for parents, to provide sensory equipment for schools and fund therapies to support children develop speech. We still aspire to open an avalon centre for families and will make this our priority in 2022 and 2023.
