Jo Chadwick‘s personal experience of growing up with her SEN brother in the ’70s.
Growing up in the ’70s with a younger brother who was (in those days) termed as ‘mentally handicapped’ life was, well, different from everyone else’s. With 22 months between us, I don’t remember there being a time without Jonathan; he was always present. There in my earliest memories, flailing his arms, body filled with rage, pummelling the floor, screaming and shouting. He was ‘hard work’ at times, my little brother who broke all my toys, smashed furniture, pulled at my cheeks with his little chubby fingers, yanked at my hair. Yet, for some reason I was supposed to forgive – because he was only little.
My role as the big sister
The older he got, the stronger he became, he could pull my face harder, break more things, scaled up his aggression to punching through windows, drawing on walls. Yet my parents maintained a growing sense of calm and patience. I was taught that my brother was special, a gift, that he’d been ‘given’ to our family because he needed us, and we needed him. I was five when the penny dropped – Jonathan was special and it was my job to protect him. I was his big sister, and this was the most important role I had in life – to excuse him from everything he did because he simply couldn’t help himself, to defend him to the hilt, to not let other kids be mean to him, to help him when he struggled, to always be there for him, always.
That’s a lot of responsibility for a 5-year-old to take on. But I did, willingly, and filled with a sense of purpose. In fact, it was my main purpose. I was told what a wonderful sister I was, frequently. I was praised for being so good with him, for protecting him, for doing my job. I loved my little brother so very, very much. He was the most important thing.
Masters at masking
Being a sibling to a special needs kid doesn’t change with time, nor with decades, or politics, or inclusion policies. But we also have needs that are often unknown and therefore left unmet. What I felt in the ’70s and ’80s is the same as many kids in the same situation feel today, and very few people understand us. People often look at the parents of kids with special needs, wondering how they cope, how they can be so calm, so selfless, have so much energy. How they can have so much on their plate yet be so very optimistic. How they can be entirely unsupported, be stretched beyond what seems even possible and still have the energy to push through, in many cases not just during childhood, but for life.
What they don’t do, is spend much time considering the other children in the family. Sure, they marvel at their nature but they rarely understand what lies below the surface – patience, kindness, compassion and inherent need to protect.
There are a lot of us out there, ‘masters at masking’ in our own rights. We are brought up to be people pleasers of extraordinary proportions. Not only that but for many of us, we are experts at putting others’ needs first, and feel guilt when we tend to our own. While I can’t speak for us all, and some may well arrive at school sharing a need for attention – tired, both physically and emotionally, distracted and crying out for help – the kids about whom everyone says ‘They’ve got a lot going on at home…”. For the rest of us, in school you simply wouldn’t notice what’s going on inside our very busy, very closed, and far much more congested minds. The cognitive load is real.
Under the surface
So, here’s a window into the world of my childhood mind, the kid who was bright, caring, and popular, one who did well at school, was a little ‘naughty’ but nothing of concern. The child that loved to read, loved to learn, but also to chat and joke around. The child that seemed ‘fine’ on the surface but unknown to anyone had locked away her own feelings so deeply that it prevented her from reaching her full potential.
I hope this article may serve to help you help other children find a voice to express themselves safely – and their feelings honestly, openly and without guilt or fear. Because if you can do that, you will help these kids thrive. Of course this is my experience, but over the years, and having done youth work, 1:1 work and run summer camps in my youth with children and young adults of varying abilities, I’ve seen myself in others for decades.
Jo and her brother Jonathan as children.
Growing up with a special needs sibling is like an elite club that you automatically qualify to join… you’re followed by a stream of praise by other adults, “Isn’t she good with him?”, “What a lovely girl!”, “So much patience”, and so on.
For me, being Jonathan’s big sister defined me. Being his big sister gave me purpose, it was my life.
Becoming smaller
It’s harder as the years go on, the responsibility grows, your patience is stretched, the more your role defines you. You find more empathy, more kindness, more ways to play or engage. You choose friends based on who responds well to your sibling, who can handle him. And the more that being a sibling defines you and your choices, the smaller you allow yourself to become.
Every worry or fear you have you have is filtered through a lens of comparison, wondering if you have a right to feel this way, or if you should be grateful for the things you have. I felt like I could never show weakness, had to make sure my parents had nothing to worry about with me – because their plates were full enough. I didn’t ever want to be a problem.
The green-eyed monster is very big, and very real… even if we keep it hidden under the bed. People pleasing, masking and inherent guilt protect us from showing our very real envy. You can’t help but wish at times that you could just play nicely with your sibling – without having to worry about them, be able to stay on track rather than stopping in the middle because it’s too much for them, or they don’t understand or they’re bored, or frustrated. You come up with all the ideas, and very rarely get a chance to see them through. So, you get used to feeling you’ve failed too.
When you see other kids playing with their brothers or sisters, it’s tough. You wish you could play like that, and you wish you didn’t feel bad for wanting it. You even wish you could fight like other kids do, but you can’t because it wouldn’t be fair. You’d always win, and that would be mean.
Living in a shadow
Looking back now, I lived in Jonathan’s very noisy shadow, which I don’t begrudge in the slightest. However, for us children growing up with a sibling with greater needs, you shrink yourself, and more importantly, you shrink your needs. You’re so busy being kind and caring and wanting everyone’s praise for being so, that you don’t learn to care for yourself. You have no boundaries, and nor does anyone else in the household. You all carry guilt – guilt for what you can do, that they can’t do.
Siblings of SEN children are brought up to be peacemakers. We’re quieter, more considered, we’re more serious and (especially for the older ones) we have a load to bear that only we, and others siblings like us understand. This weight never lightens, it changes with the years. Your role in the family has been defined from the earliest age, it’s a job you have for life.
Supporting siblings
So, please, if there are children in your class or setting who have a SEN sibling, don’t forget that, beneath the surface, there’s so much going on. Know that they are unlikely to ever ask for help, but if you had some time to offer, it could make a huge difference to their inherent happiness and their lives.
Consider giving them a voice and a platform to be open and share their world with their peers. World Kindness Day, Neurodiversity & Inclusion weeks, International Sibling day and so on. Or simply take some time to reach out to that child, tell them that you know that they have more going on that most, and that you are there for them if they ever want to talk about themselves.
Giving these children the space and the language to use to express themselves fully and without shame is so vital for their personal self-development – and to help them feel whole, not just someone else’s brother or sister.
Author
With a background in brand marketing, strategy and copywriting, Jo leads the creative development and strategy for The Happy Confident Company. She is passionate about developing best-in-class programmes and products that support parents and teachers to help all children thrive.
