Lost & Found
“Midway upon the journey of our life, I found myself within a forest dark, for the straightforward pathway had been lost.” (Dante Alighieri)
Seven years ago my daughter, Chloe, was diagnosed with Autism. She was three years old at the time. I was a full-time working mum of two. I was also a wife who had decided it was time to leave a marriage and of course, in true ‘perfect storm’ style – I felt the need to move my career forward in the next direction and leave the company I had worked for the last 12 years since joining as a Graduate.
I knew from an early age (almost as she was born) that Chloe was different. She held a stare far more intently than my son ever had – even at a day old. She looked curious, aware and almost as if she had been here before. It seemed more than just the normal awareness and curiousness of those early days of entering the world.
Chloe was not developing in line with milestones. She could not sit up on her own at 6 months and this continued to be a challenge. She would rock very hard in her baby bouncer with a repetitiveness that seemed much longer than your normal baby. She also seemed very distant and unresponsive to emotion, but she did smile – a lot! She suffered from extreme eczema on her face requiring multiple consultant visits. She also got diagnosed with a small ventricular septal defect, discovered as part of a routine examination. Following several assessments during this period she was finally referred to a Paediatrician with suspected Global Developmental delay and then from 18 months – she was put under observation until 3 years old when they could first conduct an Autism Assessment. I remember being in the room with her Dad as the Doctors sat around a table with my daughter conducting various observation tests. I knew what the answer would be. My whole world at that moment seemed to fall apart.
Everything changed from the moment she was born. My awareness of the person I was about to evolve into was now coming into effect at the point where my dream had ended – that dream that we tell ourselves (some of us from a young age) that we are in control of how things will turn out. I was officially in my ‘Forest-dark.’
And here is where the story for me has most of its richness, its sadness, its frustration and it’s joy – the Middle. The ‘Forest Dark;’ the place where you look and feel your way around not knowing where you are going or how you may navigate yourself around to find a clearing.
For me the ‘Forest Dark’ was a liberating place – it was in the struggle that I finally let myself go – all the previously held beliefs of what my life was going to be like and how I was going to make that happen falling away like leaves from a tree. It was a time of immense renewal for me
Firstly I threw myself (literally) into the world of Autism. Reading every book possible – looking online for the latest research. Even attending a seminar on how to ‘fix’ and ‘manage’ my child’s condition – something I moved on from as it felt too exhausting to keep up with the theories! I also had to keep the world going. I had to keep getting divorced. I had to maintain a home. Most importantly I had to provide for my son emotionally so he did not get left behind in the darkness too.
For me the middle consisted of fighting – ensuring Chloe had a statement of needs (now an Educational Health Care Plan) which at 3 years old was unheard of in my borough. Fighting for her to get the right medical treatment. Even fighting for her to get the right school place. But little moments kept happening, if I paid attention enough. Chloe’s world is highly tuned and highly sensitive. She has prodigious hearing and a memory to match. She stores and notes, observes and reflects. She also entrances with her unspoken grace and love. We smothered her in love – even if she did not quite know, back then at least - how to give it back. She was also prone to severe meltdowns when young – a way of articulating her frustration as speech was still developing. Her screams pierced your hearing and went straight through you
I had the child who had meltdowns in the shops and people looked at either disapprovingly or with a look of sympathy and non-judgement. But it was in these moments of intense anger from Chloe and frustration I discovered a beautiful thing; the present moment. My friends would often say how amazed they were in how still and focused I became at these points. The whole world could have been looking at me and I would not have known. I just looked at Chloe and remained still inside and out. I waited for her to calm down and this energy reached her quicker than if I too got frustrated. And she reflected it back to me; she understood that is what she, too, needed to do and slowly she would calm herself down by looking at me as I reflected calm and being there only for her.
These moments were dark and not something I could control. But I found power in letting go of trying to control and orchestrate. I learnt the power of being still. Of hearing nothing but seeing everything. In this world of Chloe’s looking for her, I actually found myself. In the Forest Dark. It’s where the magic happens if you look beyond the trauma and the challenge of the moment. These moments when presented to us strip away the layers that we have built to tell ourselves a story – to create a story – to hide a story.
Chloe noticed everything. Rainbows distant and faint – that would not even be at the corner of your eye - would be revealed by her. Phone masts going up in a tiny corner of a street hidden from view. Changes in an environment so small yet identified by her curious and observant eye. She sees and hears so much – because she is present.
In the Forest Dark I found myself more effective, resourceful and very well-prepared. You have to be with a child on the spectrum. Work became a focused activity; one to be respected but clearly prioritised so that in the time that I was there, the most critical work was delivered and my leadership capabilities increased as I learnt the art of delegation and empowering those in my team to do more and be more – and not have to have control over everything myself. I took delight observing more rather than managing and in a way became more effective at planning and prioritising and looking forward to things that may need to be worked through and support the team in the process. I was more thoughtful so therefore more productive in practice. I was tired and exhausted but I had a purpose and a reason to ‘Keep Going’.
I grew my career. I got divorced and co-parented. My son became a beautiful brother and caring and compassionate human being from his own journey in this story. The magic truly happened in a terrifyingly exhausting but liberating way.
I have not mentioned the fights with Local Authorities and some people who did not understand how to manage the world of Autism and the beautiful children in it. I also have not got time to mention the amazing friends I have and new ones I have made (as well as some old ones I have lost) and the support groups, the networks, my sponsors and colleagues who showed me amazing support and gave me huge encouragement. It’s all in the middle of the story – in all its glory and magic.
And now I am at the beginning of this stage of my story.
Time is not linear – there is no straight logical construct to time. That is a man-made idea. Time is circular and does not stop and start but is continuous. And like the symbols of Yin and Yang – there is an interdependency as a result of good and bad, joy and sorrow and learning and unlearning. You can’t have one without the other. Challenge and adversity are often the precursor to discovering something new and beginning again. It does not always happen in the order you want but it happens in the way it needs to. All I would say is don’t move too quickly from the middle of your story – it truly is where the magic happens.
Chloe today: she is bright, happy and full of energy and immense clarity around what she wants and what she likes. People who meet her even for the first time are transfixed by her energising force and warm nature. She knows the value of the present moment and takes time to take it all in.
We still have our challenges but I have learnt to stop myself from thinking more than I need to and stay in the present with what I know and take the steps forward, keeping grounded in that moment with each one. Chloe taught me that. So what is the biggest thing I have learnt in this journey? Stories change – learn to re-imagine and don’t get stuck in the middle. Always evolve your story in line with your learning from the moment. See the lesson it’s teaching you. Don’t feel you have to solve for everything; take the puzzle pieces and just lay them out but don’t feel the need to put it all together all at once. Take your time and live in the confusion and the uncertainty for a bit; sometimes the pieces start to put themselves together without you even trying.
Finally always believe in the power of possibilities. Chloe is learning the piano at the moment by the Suzuki method with a wonderful teacher. Every Saturday is an emotional moment for me. As I look at her engaging and moving her fingers across the piano keys, I think of the middle of the story in the forest and am glad I found a way through.