My 6-year-old daughter JJ, has a rare genetic disorder called Rett Syndrome. She has a wheelchair, a speech device, and a feeding tube. Because of her disabilities and medical complexities, we often bump up against the ways in which the world is not structured with people like her in mind.
JJ’s life is made up of many moments that remind us just how different she is. Because she couldn’t use her hands to do the art projects at her Girl Scout meetings, she got so frustrated that she quit Scouts altogether. When we attended a children’s event at our local library, no one would sit next to us. And even though she has been in school for more than a year, she has only been invited to a single birthday party by her classmates.
Many other boys and girls with disabilities experience similar exclusions. Often, these children feel hurt when people shy away from them, forget them, don’t consider possible ways to adapt activities to their needs, or leave them off the guest list. Small things like this can chip away at someone’s happiness, eventually leaving them with deep emotional wounds.
Not surprisingly, it always seems to fall on these children’s parents to manage the situation. The problem is that we have so many other things to deal with that sometimes we just don’t have the energy to fight for social inclusion as well. JJ’s lack of playdates and party invites stirs up a wistful sadness in me that sometimes darkens my mood. But I’m often too busy taking her to appointments, troubleshooting illnesses, attending IEP meetings, and tending to her in the middle of the night to do much else.
Many parents like me resent the fact that we must constantly advocate, educate, and demand inclusion for our children. After all, we are part of an extremely exhausted and overwhelmed sector of the parenting population. And so, mothers and fathers like me sometimes just give up. We continue, silently shouldering one small sadness after another.
It doesn’t have to be like this. There are many ways for parents of typical children to bridge the divide and help kids like my daughter feel more comfortable.
Here are some simple suggestions that might go a long way toward creating joy instead of sadness:
Invite our children to events. Even if you’re not sure they will come, include them on the guest list. No one likes to be overlooked.
Ask how to adapt things for us. If a child’s family accepts an invitation, ask how the event or environment can be adapted for them. Often, there is no need to change anything big; even small tweaks feel thoughtful and are greatly appreciated.
Be open to inclusion being a failure. Even when a child attends your event, things might not go well. They could experience a health crisis, have a meltdown, or become overwhelmed. Often, this means leaving at a moment’s notice. If this happens, don’t draw attention to it, and please don’t take it personally.
Don’t stare and don’t ignore. Treat the child like you would anyone else. You don’t have to chat if you don’t want to, but a simple smile or hello acknowledges their presence and makes them feel seen.
Get to know our children. Our children are used to having people talk around them, not to them. When you take the time to ask about their interests and preferences, you show them they are worthy of others’ time and consideration.
The world might not be built for people like my daughter, but it certainly doesn’t have to exclude them. Help parents like me adapt places, events, and activities to fit all the children like her. Trust me—we can’t do it alone.
