When I gave birth to my second child 7 years ago, I had no idea how she would shape the person I am today, from building my confidence and passion, to shaping my career path and opening doors to the most rewarding work I have ever done.
Our daughter Isla was born with Down Syndrome. A total surprise to us, and for a few months I think we were rather numb and just ‘got on with it’. We already had a two year old daughter after all, plus Isla had medical needs which needed around the clock attention. Such is my nature (as I’ve now realised), I also had the biggest pile of reading material on DS. You fast realise that, whilst you meet many ‘experts’ in DS, absolutely no-one beats yourself as the expert in your child and how their condition affects them.
By the time Isla was 2.5 years old, I found myself drawn into the first new career path shaped by her. Her wonderful special need’s nursery was facing closure, due to spiralling costs. This nursery had been a life line to my family and had shown Isla (and us) warmth, love, support, friendship and development opportunities. While Isla was coming to the end of her time there, the thought that this nursery wouldn’t be available to future children, was something hard to bear.
Against all reason (I now had a newborn baby boy, a 2.5 year old disabled child and a 4 year old plus our house was on the market), I took on the task of organising a parent led task force to save the nursery.
"When you find something that truly motivates you, you find and learn new skills, courage, energy and passion."
I found myself approaching businesses for support, undertaking fundraising, event planning and management, managing press, public speaking, including a stint on the local BBC news. Of course, I was able to use my existing marketing skills, which certainly helped when presenting a strategic plan to the Board of Trustees, but my skills base and confidence just grew and grew.
The energy that this parent-led activity generated was incredible and ultimately catching, within weeks, our Trustees were working with our local councils to access and secure ongoing funding to ensure the nursery never faced this situation again. 5 and a half years on and I’m thrilled to say that the nursery is open, full, thriving and now open 4 days a week (instead of the original 2 days).
I also continue to host an annual Vintage Tea Party fundraiser for them, plus this year my now 9 year old daughter worked with her friends to host their own Kid’s Vintage Tea Party (By Kids For Kids). They were incredible and raised over £800 in 2 hours. I can’t tell you how proud I am.
“There is nothing more motivating than personal passion. If you can bring that into your professional life, you can create true meaning in your ‘everyday’ and in the lives you touch.”
Following the nursery work, my next opportunity arrived. An invitation to join the Board of Trustees. Previously I would never have felt worthy of this, but as I had learned through my nursery work;
“When something you truly care about is threatened, and you realise you may be the only person able to instigate the change needed, you stop being shy, stop hiding, stop doubting yourself and you go for it.”
What a gift I had been given.
I only sat on the Board for 12 months, as I found it impossible to sustain the level of time commitment it truly needed, plus my presence on the Board had fortuitously led to my next career opportunity and a job, which was a further commitment on my time. I hope to return one day.
While all of this had been going on, Isla had been suffering a severe regression. She lost her speech, her signing, her eye contact and her ability to play. At the same time, she developed more and more new habits including flapping, spinning and licking. After an incredibly painful and heartbreaking few years, Isla was diagnosed with autism. We had ‘lost’ our daughter and got a new one. At least that’s how it felt. I put all my DS books in the loft and my bedside reading was now everything and anything on Autism.
It was like starting all over again, and I can’t pretend it didn’t break us, but….
“See everything in life as an opportunity. See the gift it brings. Take a moment to absorb news, regain your perspective and move forward.”
That’s a quote I don’t make lightly or quickly. Isla has been diagnosed for about 2.5 years now, and I’m probably now only just about starting to accept ours and her ‘loss’. The opportunity Isla’s autism has presented to us is vast however, from new friends, to more empathy and understanding of yet more disabilities, to the learning of a whole new communication system (we now use picture exchange), to taking far greater care over the food we eat, to appreciating the beauty in small but precious moments such as when Isla gives you incredible eye contact or one of her heart melting smiles. The list goes on.
Don’t be fooled though. Autism is not easy. But – it’s here, it’s part of Isla, and for all our sakes, we must find the positives and flourish.
Isla’s autism also led me to Mindfulness, which I credit largely with my ability in starting to see the gift in everything more and more. I’m still a novice, so it’s not all wonderful. Of course it isn’t. I’m only human. But, Mindfulness helps me get back on track. It’s also a practice I’m using more and more with my other children. I really see Mindfulness as a gift to all. Working with Claire at the Centre of Wellbeing in Sawbridgeworth we were able to set up a weekly Mindfulness class specifically for parents of children with additional needs. It has been an utterly fantastic experience offering so much support to all who attend.
The most unlikely gift from Isla’s autism however, is how it led me to my current job. Peter at O3e approached the Board of Trustees (whilst I was there), asking for ideas on products for children with disabilities. Isla’s autism had inspired me to create sensory walls for her in her bedroom and playroom. Sensory Processing Disorder is commonplace with autism, and Isla gets real pleasure and her sensory needs met from tactile materials, lights, sounds, resonance and so on. My sensory walls were rather primitive, but I harboured a bigger dream to create something much better. I shared this idea with Peter, and so our conversations started.
I now work with Peter on his marketing and together we have developed a truly interesting and I think, inspiring, team work challenge. We called it ‘Make Sense’, and it pulls on your creative skills to build a beautiful piece of sensory artwork for children with learning disabilities. I think you’ll agree that it really does ‘Make Sense’!
All inspired by my wonderful daughter.
