This is a little insight into how autism in my family has affected me and how I have 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 behavior, somebody believed me, somebody realized I was not making it up, and somebody recognized had a disability. I cannot actually describe the feeling I was experiencing as there were so many going through me, but one thing I did feel was vindicated.
Throughout the course of being diagnosed, my friendship circle changed dramatically, to the point where I 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 from a different perspective. You become more attuned 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 heartbreaking. 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 realize it’s not him I feel sorry for; it’s them. They don’t know this beautiful, intelligent, creative, athletic young man known. 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 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 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 autistic 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 fallout, 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.
You never know if you could end up being that parent’s savior. Every day is a battle because there is a lack of awareness of what autism is and its variations of it, which means there is a lack of empathy and understanding, which impacts the fact that there is a lack of acceptance. This has got to change; the sooner the better.
Every day is always 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 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 feeling safe and secure, we feel safe secure.
Safe and secure in knowing we have a ‘family’ who will continually support us, who shares their kindness that goes above and beyond 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.
I’ve seen such a change in him because of them. He is involved with them on a fortnightly basis, taking part in the autism project they run called ‘Play On’. They are developing his communication, social and emotional needs, as well as teaching him how to stay healthy and keep himself safe.
We have made friends for life. We have been given opportunities that we would never think were 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. There is a positive side to being an autistic mum. The problems and difficulties he faces every day are mind-blowing, but the resilience you see in him dealing with them is just breathtaking, 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 learned 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. So I will continue to look and his resilience in 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.