A Reflection On The Last 18 Months

I haven't written anything here for a long time. There's been many reasons why. We moved into a house that required an enormous amount of work and had to live it in while undertaking that work. It turned out to be more unpredictable and mentally strenuous than I ever anticipated. We moved house so we had more room for a new baby. We lost that baby and I never physically recovered. I was ill for a long time before it was discovered that I had been living with undiagnosed coeliac disease for potentially years. I was diagnosed 2 months ago following a positive blood test and a gastroscopy and biopsy. I am currently malnourished, anemic and losing my hair. I am tired beyond anything I have ever experienced before and no amount of rest seems to help. It's been a long and tiring 18 months but the most significant reason why i've stopped writing has been the death of a dear friend.

I met Jackie Robinson around 10 years ago. She came to an Aspergers support group I was attending. She was reaching out to people with Aspergers syndrome and asking them to join her on her phd research project. She wasn't asking for case studies but for partners to help her assess what support people with Aspergers have and how access to services could be improved. She wanted help to prove that people with Aspergers syndrome can work together to create something profound and that is exactly what happened. Jackie, myself and the other team members created The Triad of Understanding. An inclusive framework to help those with Aspergers and those around them have a better quality of life. It was a revolutionary framework that was met with great feedback. I stood in front of hundreds of people and presented our findings. I worked with universities to help further their understanding. I became a published author in 27 countries. I helped train medical professionals. I delivered key note speeches. I found purpose, self confidence and a better understanding of myself. I had drive and ambition again. 

It was my work with Jackie that inspired me to set up this blog in the first place. Our work had shown me that having Aspergers meant I could make a difference. I could use my experiences to change lives and when I was a pregnant woman with Aspergers I knew there was an area my experiences could help improve. Awareness and support for women with Aspergers is severely lacking but experiences of pregnancy and autism were even more dire. I had an opportunity to change that. I could use this blog to show the world how family works when mummy has Aspergers. Jackie was so proud of the work I was doing. 

In July 2018 we began working on applying for funding to develop an app to help assist those with Aspergers in a medical setting. It was a few months later when I found out she had cancer. She died before I got chance to see her again. I attended her funeral and our work was spoken about with such high regard. I was so proud that our work brought her so much joy. Her legacy continues in many ways- there is even an award in her honour and the Triad of Understanding still stands and is use in many establishments but sadly our work as a group could not continue without Jackie. The void was too large and the pain was too much.

The last 18 months have taken a lot from me both physically and mentally. I've lost a lot, including my direction and purpose. I thought the desire to fight for change had been extinguished but i'm starting to see that the embers are still burning. I've recently experienced some prejudice and misunderstanding in relation to Aspergers and it seems to have sparked something that lay dormant. It maybe the feeling of change that's in the air at the minute or maybe it's because I have finally let in the grief surrounding Jackie but I know I need to write again. I've been afraid to rediscover the person who started this blog purely because i'm not sure how to be a confident, driven, ambitious campaigner without Jackie but I know I need to, now more than ever. 

So i've decided to return to my original blog name, to take the pressure off writing solely about Aspergers and so I can include some information about Coeliac disease and share some of the positive aspects of my life's journey. I'm not sure how it's going to pan out but thank you for sticking with me this far and even if no one ever reads this blog it will have at least helped one person with Aspergers. It will have helped me.