I regularly check the Mencap website for events and general updates and couldn't believe it when I saw the new FamilyHub page - I have been waiting for something like this for a long time!
My brother, J, is severely autistic and completely non-verbal. He is now 19 and I am nearly 21. He is my absolute world and the inspiration for everything that I do. Despite this, having J as a brother isn’t always easy. He faces so many challenges in life - more than anyone should ever have to. Fighting for his quality of life has dominated my parents’ lives - it never stops. We have never had particularly positive experiences of the social care/learning disability support systems and it has been an incredibly tough experience for us all, but J is the one who ultimately bears the brunt of service inadequacy. He doesn’t have a voice, so it is up to us to advocate for him.
J has been in residential school since he was 5 - I don’t remember a time when he hasn’t lived away. I remember the day we dropped him off as if it were yesterday. We have continued to have him home every 6 weeks, but my parents could not cope with him full time at home. As I say, he is now 19 and living in a residential service for adults with autism/learning disabilities.
Until I was about 11 I was pretty much oblivious to how different J was and the impact of his learning disability. To be honest, I don’t think I really understood it. My parents had told my school and all my friends parents - so I never needed to explain. People just knew. Then at senior school, things changed. Suddenly French class was full of talking about our families and what our siblings were called, how old they were, what school they went to and what their likes and dislikes were. I suddenly became very aware of how my family were different. People started asking questions (some who knew about J and were being deliberately nasty) and some just out of curiosity. I didn’t know what to say or how to explain. How do you explain that your brother doesn’t live with you at home, he can’t talk and sometimes he hits himself when he is cross? How could I explain that I spent every third weekend watching and rewinding Kipper the Dog hundreds of times and helping my parents bath him and put him to bed? I had no idea. So I didn’t - I actively avoided every conversation about siblings and families. This carried on throughout secondary school and to a certain extent sixth form. My best friends, who have known my family since I was 3, have always known, and I told a few close friends in sixth form. But I chose to not talk about J for the majority of my childhood and adolescence. I feel pretty guilty about it. I didn’t want people to think I was ashamed of J - I wasn’t. I was just incredibly protective. I couldn’t take it when people didn’t understand and I wasn’t strong enough to explain about it. I was so aware of how different we were and to be honest I was probably very jealous of everyone else - all I ever wanted was a ‘normal’ family - to do ‘normal’ family outings and holidays.
Now, 20 and studying for my degree in Speech and Language Therapy (SLT) (and a lot more emotionally mature), I am comfortable talking about J. I think studying a related degree has helped - I have learnt so much - about communication difficulties in general, as well as autism and learning difficulties (where my passion has always been). It has helped me understand J. I always knew I wanted to help people, like J if I could, and SLT has really helped. I can talk about him now without getting upset and I can explain our situation - and everyone understands, which is what I always feared wouldn’t happen when I was younger. It’s hard to explain!
I think part of why I found it so difficult to talk about J was because I had no-one who understood, or was in a similar situation to me. I have never met anyone with a disabled sibling. I have been on online forums, but never posted or become involved, as I still didn’t feel like I really fitted in. Most posts from siblings that I have seen are about concerns that their sibling is being bullied at school, or that their brother/sister says things that are hurtful. I’ve never experienced those things. I’ve never heard John talk. J has never had the opportunity to be bullied - as he’s been at special residential schools since he was so little. So even if I have read sibling experiences of having a sister/brother with autism/learning disabilities, they tend to be about siblings who are verbal or ‘higher-functioning’ and have a very different experience to me. I would have really liked someone to talk to when I was younger - someone who was in a similar situation to me. That’s why I am so excited about the FamilyHub page on Mencap - hopefully there will be lots of sibling stories that we can all relate to. I’m hoping to find lots of siblings, who are finding it hard to talk about their experience, and hopefully offer some advice (looking back now I know what would have helped/what did help). I’m hoping to set up a blog too!
Sorry for the incredibly detailed and long post - felt like I needed to get all of this off my chest and introduce myself properly. My main reason for this post and joining FamilyHub is so that we can build a sibling community. Maybe we could even build a big enough group to do a charity event especially run by siblings. I’d really like that and I know our siblings would really love and appreciate it too, even if they can’t show it.
Thanks for reading!