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On 26th July 2013, our beautiful baby girl Ava was born. Ava was happy and healthy and was developing 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 currently non-verbal. 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.
We educated ourselves about Autism by researching the subject day and night. We watched videos, read scientific papers and read almost every book we could lay our hands on. We battled with the health service to gain access to critical early intervention which we learned was essential for Ava to reach her potential. However, progress was slow due to the lack of resources in place and long waiting times.
Therefore, we self-funded 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. We also managed to secure a specialist nursery placement in a communication centre as well as additional one to one support for Ava from a local charity.
Throughout this period, 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 Ava needs 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.
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. At times 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 reached out for support from some established charities. 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 individuals with autism and or training for parents and professionals at a cost.
All of this was useful but it was not the kind of support required by desperate 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 he had a Grandson with autism that was also non-verbal. This coaching partnership provided a great source of strength to me. We worked on a personal growth plan 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 study personal growth strategies daily to master my emotions and I am now setting big life goals that will help me to make a difference in the lives of others.
We 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.
We will offer a range of support to parents and families including practical support and information about autism, signposting to relevant support and early intervention, peer mentoring and personalised programmes to enhance general wellbeing and resilience. We need your help to accomplish this.
Donate or contact us to see how you can make a difference