Before I had Oliver, I was very uncomfortable around people with disabilities. It’s kind of embarrassing to be honest about that, especially at this point in my life, but I wanted to open this conversation up because I don’t think I am the only one who’s felt that way.
Often when I am out in the community with Oliver, I notice people watching us. Mostly, they pretend like they aren’t really looking but sometimes I’ll catch their eye and they quickly look away. In the early days of our journey, this really bothered me. I felt like we were lepers, worthy only of stolen glances or outright staring.
No one at the park ever talked to us or even came near us and that was hurtful at a time that I really could’ve used a friend. But as I have processed through much of my grief, I’ve come to realize that it’s only fear or a lack of understanding that creates this aversion.
I know I cannot speak for everyone, but every special needs parent I have ever met is more than willing to answer well-meaning questions and curiosities about their child. As a group, we are highly educated experts on our Childs’ condition. We want them to be accepted and included like any other human but are frequently treated as outcasts more than anything. I understand that it can be intimidating to enter into a conversation when you’re not sure what’s ok to say or how it will be received. So I wanted to offer some suggestions of ways to approach a family or child who obviously has some differences.
It’s a universal truth that everyone loves a compliment, but I dare to say that the special needs parent loves one even more. We work so very hard for every little thing but are often given only bad or worse news by doctors and therapists and criticisms about what our kids aren’t doing yet. So try starting with a compliment. “Oh, he’s so cute!” “What a beautiful smile.” “Look at him go!” “Wow, you seem like a really amazing mother.” I promise you that statements like these will warm almost any SN parent’s heart. We pour everything we’ve got into these little ones and when someone recognizes their strengths instead of their weaknesses, it means the world.
If you can’t come up with any compliments, another option is to go up to the parent, like any other adult at the park and introduce yourself. From there you can be direct by saying something like “I notice that your child moves a little differently. I’d love to understand more.” This is pretty safe approach because there is no accusation that anything is ‘wrong’ with the person’s child. There is just an honest interest. You could then follow the introduction by saying ‘I’d love to get to know you guys but I’m honestly not sure what’s ok to ask. I don’t want to say the wrong thing.” I find honesty like this incredibly refreshing in our, often times, inauthentic and isolated world.
And as far as how to treat the child whom you’re speaking of… treat them like any other person their age. Often our kids don’t speak or make eye contact and so people assume a lack of intelligence. There couldn’t be a more inaccurate judgment than this one. There’s a saying in the SN world, ‘Always presume competency.’ So many non-verbal people are 100% present in what goes on around them. It is only that no one gives them the time or opportunity to express themselves. Each non-verbal child speaks in his or her own unique way. For Oliver, it is with his eyes. For others, it’s with their body language. And for some, it’s sign language. Take the time to ask how they communicate. It’s fascinating to learn about all the different ways humans can relate to each other when speech isn’t an option. Much of what we neuro-typical people communicate is non-verbal; we just don’t realize we’re doing it.
Just be sensitive to the fact that you are often interacting with a parent who has gone and may continue to go through significant trauma. Put yourself in their shoes and realize that some questions may trigger emotional responses within them.
Although they don’t bother me personally anymore, questions about outcomes (i.e. Will they ever walk? Will he ever talk? Will he ever live by himself? ) can be particularly off-putting for SN parents to hear. The reason for this is that it forces us out of the present moment and into a future that often seems daunting and full of worry. Early on in the journey with a special child, a parent must face the unknown as each passing month brings another milestone the child doesn’t meet. Every doctor’s visit brings another development survey to leave blank. The babies all around you change with each passing day… but your child stays the same.
SN parenthood requires a level of patience that most people just are never forced to develop. Everything may or may not happen one day. Some children will take their first steps at age 5… Some never will. Some will say their first words at age 8… Or maybe they won’t.
The only way to dwell happily in this state of limbo is to develop the ability to live in the present, practice gratitude for all of the things they CAN do, and set aside all worry about the future. We don’t know if our child will do any of the things others will, but we do know that we’re working with everything we have to get there. We continuously keep that hope alive. Within the SN community you will hear statements like; ‘She’s not walking YET.’ ‘He hasn’t said any words YET.’
It takes an incredible amount of dedication to maintain positivity in the face of so much defeat so keeping the conversation in the present, supports the mindset that Hope truly Never Ends.
So next time you see a mom like me or a child like Oliver, don’t be afraid to say hello. If we can put our differences aside, step outside our comfort zones and take a leap of faith toward connection, who knows what kind of beauty may come.