A Personal Reflection of Autism and Becoming an ImROC Trainer
By Kellie Barker ImROC Autism Peer Support Trainer
A Personal Introduction
To introduce myself I would begin with I’m an ex-child who fostered and had an amazing childhood in a very busy advocacy lead house. I was then part of a fostering agency my parents started that helped hundreds of children until 2017 when I left my role as I could not longer meet the needs of the role due to my own sons needs.
I became Oscar’s full time carer, something that as his parent I have struggled to digest. How can a parent be a carer too and is it a job? Well frankly yes it is a job. All the parts that are hard and unnavigable with a large amount of advocacy across many different services is a job in itself. The loving him part of course is not the job, only another parent carer understands this. I am not bitter about leaving my job but I was good at it and I got a lot from it personally, I now transfer those skills into Peer Support.
Advocating to me is something that runs through my veins so advocating for my son came as second nature. I would say it took me around 2 or 3 years to fully accept his long term diagnosis and my role as carer, not because I didn’t accept them or him, but because I needed to make sure I don’t mess this up.
Oscar is a very complicated child with complex health and is supported across three teams one in Kent and two in London – yes that’s right he’s a large pic’n’mix with extras.
Oscars full clinical diagnosis is as follows. He is severely autistic (severe is a term I challenged but clinically he is , due to lack of impulse control). He has Attention Deficit Hyperactive Disorder (ADHD) this causes many problems for him including complete shut down. Oscar has extreme anxiety and an eating disorder managed by Great Ormond Street Hospital.
Oscar is a joy and we feel it is our job to make sure we celebrate his uniqueness because frankly he is amazing. We help him navigate the things he finds challenging and seek him as much support as we can.
Working for ImROC
How did I begin working with IMROC ? Well truth be told I wasn’t looking they found me – is it work? – not to me. It is my refuge, it is my place, my people – always giving – always loving and the fuel I need while navigating the biggest void in my life.
In 2021 as the New Year came I made a wish. That wish was for my childhood best friend Lucy to beat cancer. She had one more operation to go on the 9th of January then she would (we hoped) be clear. I made a point of visiting her on New Year’s Day. We broke the lock down rule and hugged and I knew it was for the last time.
Lucy was my rock. We never fell out over 35 years of friendship and I suppose looking at it now peer support. We spoke numerous times a day we told each other everything and I made a promise to her that if she died I would gratefully take her loo rolls off her hands, but more than anything raise her children as my own. This I am part of doing and share the care. Our family is blended and I’m proud of that.
On the 12th of January, after complications with surgery Lucy died at home suddenly and then the void came. I cried for 5 days even when I wasn’t crying the tears streamed and I couldn’t turn it off. I suddenly felt very alone – what would I ever do without her?
After 5 days I woke with an urgency to plan for her children and the one person I needed was her. The rest of the year that followed was spent feeling numb, everything a blur, her children, all mutually feeling her loss whilst uniting with each other.
As autumn fell I started to become withdrawn. I run a successful clothing company and I am heavily involved with community projects. I collaborate with many people and I’m always busy but inside there was just a hole that I had to accept would always be there and I had to decide to not ‘live sad’ anymore.
Through my charity champion work via Anna Kennedy I was copied into an email about Peer Support Working for people with autism. As I read it I thought I need this type of structure in my life, I need to meet new people, it will give me focus.
I attended the pilot training and when we got towards the end I started to worry that the feeling would come back. I had met all these wonderful people and I loved them all. We had an instant connection as if it was magic – as if the universe knew I needed to learn and share with others.
I spoke openly to my colleagues about Lucy she was welcome in the space. The more I was able to talk about her and acknowledge her loss I found myself listening to her voice notes less. I decided to email myself all her photos, videos and voice notes and delete them off my phone. Meta has a great way of regurgitating a photo of your dead dog or even best friend and it’s triggering so I decided my phone would be a Lucy free zone but my heart would never be.
Towards the end of the training I started to think about what I could do to keep close to people and when the opportunity came to become a trainer I jumped at it because I needed the people I had met or people like them. I needed the routine and the space to be me. I had lost Lucy; my rock but I had found ImROC and it was, I believe sent to me when I needed it most.
The work in ImROC allows me to transfer my skills and also seek support and guidance for my unique journey with my son – it is not an easy one. I feel in my heart that ImROC saved my life emotionally – I was lost and I’m so glad they found me – I can feel myself coming back to life and I’m excited for the future .
To me ImROC is my rock. The rock is actually lots of tiny pebbles that make a beach. It is a beach that I always want to be sitting on.