Life of an Autism Rugby Mum
This is a little insight into how autism in my family has affected me and how I have the amazing support from my rugby family.
Life is hard. So hard. At times I don’t even know how I survive. People often ask me what it is like being a mother of an autistic child and how I’m dealing with the fact my youngest is also going through the process of being diagnosed. In reply I just say to them that I know of no other life, so how can I possibly say anything different.
When I first got his diagnosis I cried. In fact I sobbed. I could not quite believe what I was hearing. After years of fighting, years of being told it was down to our parenting skills, years of being told I was looking for an excuse for his behaviour, somebody believed me, somebody realised I was not making it up, somebody had recognised Ellis had a disability. I cannot actually describe the feeling I was experiencing as there was so many going through me, but one thing I did feel was vindicated.
Throughout the course of Ellis being diagnosed, my friendship circle changed dramatically, to a point where I have lost close friends for various reasons. Before I had children I was what you would call a social butterfly. How life has changed since then! As a parent of a child with autism, you see the world in a different perspective. You become more attune to situations and you see things in many different ways. However one of the most difficult things to deal with as a parent is the way people in society handle him and his difficulties, and to be honest it’s heart breaking. They have no clue. I have wondered to myself why I as a mother have to feel sorry for my son because of people’s ignorance. I then stand back and realise it’s not him I feel sorry for; it’s them. They don’t know this beautiful, intelligent, creative, athletic young man known as Ellis. They haven’t come to know him for the boy he actually is, and for the young man he’s slowly changing into. However, if there is just one wish I could have for him, it would be that Ellis and his autism be understood, and not ridiculed. Autism is an invisible disability, which means that just because you can’t see it, does not mean that it is not there, and I understand that not everybody is going to ‘get it’, but what I don’t understand is the lack of empathy that is shown, especially when it is obvious Ellis is in difficulty, and cannot self-regulate his emotions.
I suppose by writing this I’m asking just one thing. I’m asking you to please imagine what it is like on a daily basis as autism parents dealing with the anxiety, the depression, the wanting to self-harm, the feeling he isn’t good enough, the calling of names like ‘Freak’ and having to deal with the fall out, the refusal to leave the house when it comes to doing daily family activities because his anxiety is so high, the many a sleepless night, the tears and the tantrums, the fights and the arguments, the walking on eggshells, the threat of phone calls being made home because your son has been excluded because he can’t cope. I’m asking you for just a little bit of understanding. I’m asking you if next time you see a parent struggle, don’t walk on by, please ask if they need help. You never know…you could end up being that parent’s saviour. Every day is a battle because there is a lack of awareness of what autism is and the variations of it, which means there is a lack of empathy and understanding, which impacts on the fact that there is a lack of acceptance. This has got to change; the sooner the better.
Every day is always a difficult for us. If I have not cried more than twice in the day…it is a good day. However through all these difficulties, there are people who have never left us. In fact our circle of friends has grown because of it. These people have one thing in common with us…rugby. These people are our rugby family
The rugby family we have is amazing. His grassroots coaches at Littleborough RUFC, Sam Dickinson and Gaz Sharrocks, just ‘get’ him so therefore support him in every way possible. This has been able to happen because of the positive relationship that Ellis has managed to build and develop over the years with them. As parents this has also helped us develop friendships within the club, because when Ellis feels safe and secure, we feel safe and secure. Safe and secure in knowing we have a ‘family’ who will continually support us, who shares their kindness that goes above and beyond to what we expect, making us feel truly blessed to be involved with such a great club. We know we can go and talk to any member of the club, and feel supported, even on our darkest days.
Secondly his community coaches from Sale Sharks, Vicky Irwin, Ellis Greenwood and Simon Leather do amazing work with him. I’ve seen such a change in him because of them. He is involved with them on a fortnightly basis, taking part on the autism project they run called ‘Play On’. They are developing his communication, social and emotional needs, as well as teaching him in how to stay healthy and keep himself safe. Therefore, because of Ellis being given this opportunity to become involved in a great initiative, I have met some amazing people through the Sale Shark Community Team, and I know that whenever I need help, they are only a phone call away. We have made friends for life. We have been given opportunities that we would never thought was possible. We’ve also made solid friends with people in similar circumstances that understand the difficulties we face.
Both adults and children in the rugby family just accept him for who he is, not just a little boy with autism, but they have accepted him as Ellis. Autism is part of him, it what makes Ellis, Ellis, and we are all proud of him as I’m sure his coaches are.
There is a positive side of being an autism mum. The problems and difficulties he faces every day is mind blowing, but the resilience you see in him dealing with them is just breath taking, and he spurs me on to be the best mum I can be with the help and support from our rugby family. With their continued support, I will keep pushing forward, keep moving forward. I’ve learnt that even on the darkest of days, I just need to pick myself up, dust myself off, and keep going, because I have this support. I’m not going to sugar coat it, there are days I just want to throw my hands in the air and completely give up, because some days I’m so worn down, so frustrated, so exhausted, so defeated, but what mother would I be if I allowed this to happen? I’ve been fighting against systems, policies, procedures and people for so long, I can’t possibly stop now… and I won’t. So I will continue to look at Ellis and his resilience to life, I will put on my happy face and say to myself ‘Everything is going to be O.K’ and with my friends and my rugby families behind me, I know this is true.
(Thanks to Lisa for sharing this personal yet inspiring story. This really shows how rugby can help those from all walks of life. Our best wishes to Lisa, Ellis and Littleborough RUFC for the many seasons to come)