Way back in 2014 a kick-off post for RedBootWarrior’s facebook page was a link to an article narrating what it feels like to be the parent of a child on the Autism Spectrum. I shared it then because I had advocacy & awareness-raising on the brain and sharing an insiders view at what life is like for fellow parents whose children happen to fall on the margins of what is “typical” (be it by a little or a lot) seemed an excellent way to begin a new life journey.
The response to that article was a nod to a need I identified and it inspired THIS post; why it did so is as important as the fact that it did.
Helping Others Help You
When our daughter, Téa, was diagnosed, I didn’t hear from people I had always been certain would rally around us. That feeling reeled my already gutted soul.
The diagnosis brought with it many struggles and many graces, and among the myriad of adjectives it brought, it also teased out one of the missions I’ve written out for redbootwarrior: building parent’s “mental muscle” and helping them find their Warrior within.
So let’s begin with this and let me be clear: this post isn’t about you and how hard it is when others don’t make it better for you. It’s about everyone else and how it’s our responsibility to help them be who we need them to be. This article is meant to aid you in navigating situations that you may feel uncertain or concerned about and inspire ideas that apply to you.
First, Three Key Insights
1. Labels mean little to little kids, they mean little to adults, too, for that matter. Think people who know me are any further ahead in understanding how to be around me just as we had a label for Téa “Autistic” which then turned into “Rett Syndrome”? From what I’ve seen, nope. Not even a little bit. Not unless they have a personal or professional history to give them direction. So, we broach this like we do everything else for kids: simple, clear, short sound bites that clue them into what is okay or not okay.
2. More often than not, people will really, really want to stare and in their efforts not to will end up making you feel uncomfortable and unintentionally make everyone feel awkward, or angry, or upset.
3. The more ease and leadership you come with to social situations or public places, the easier it becomes for you because others are not left wondering what to do. They will take your cue.
To be simple, clear, and short: labels are meaningless, people need to stare and you need to be the boss.
Becoming the boss and feeling at ease takes mental muscle. You won’t have it all at once, but believe me, it’s easier than a 60-second plank. And what little you may think you have to work with is, in fact, plenty to begin with. You’ve made it this far, you’ve survived the diagnosis or the realization or the surprise at birth. There really is no end to what you can do.
Let’s traipse through a scenario to highlight options for how to help all of us be out-and-about together. My lovely daughter, Téa, will be our role-player for all scenarios. As you read, daydream about what you would say about what you’re dealing with.
You’re at a gathering with people who know there is something different about your child but don’t know what and are sensitive enough to what to know and polite enough not to ask.
ADDRESSING THE GROWN-UP.
Option A: “My daughter has [enter the appropriate condition here (Autism, neurological disorder, etc)]. She is very comfortable with strangers and loves to explore, especially anything with buttons and sound. She may or may not make eye contact with you but she loves it when people talk to her and even though she isn’t speaking yet, she responds to clear instructions like, “come here, please”, “hold this”, “wait, please”. Please interact with her as you would any other child.”
This is what I say, really. For now, we have it pretty good. Not everyone has this experience, though. For those of us, parents whose children are not at ease in social contexts, or who struggle with sensory integration challenges, or whose manifestations of “special” are very notable and eye-catching what I’ve just described is absurd.
So let’s make it less so. Not by hiding in our homes, but by easing how people can interact with it all. After all, if we’re in our homes because we don’t feel safe or at ease in public, how are we to expect the public to feel at ease when we do go on about our lives out loud?
Option B: “My daughter Téa has to work very hard to feel okay in public/groups. Loud noises physically hurt her and sometimes her excitement needs an outlet that might look scary to you but isn’t hurting her. Please interact with her as you would with any other child, she may not respond but it will mean the world to her and to me. Oh, and, the room down the hall would be a great place for her to soothe herself. May we use it if we need to?”
These are the tips for addressing adults:
1. Use simple words to describe what you or your child experiences.
2. Tell the other person what to do to help. Let them know. Believe me, just about everyone will be eager to understand and step-up. If you happen to meet an asshole, send them my way.
3. Invite Questions. While this may be hard at first, it is an important way to a) help your child feel at ease and accepting of themselves, b) ease you and others, and as fellow Warrior Beth Lakoff shares, “It has opened up some amazing dialogue and dispelled a lot of myths surrounding his [son’s] disability. Sometimes, the questions are tough and make me sad to answer, but I think it is so valuable that I “flex my mental muscle” and answer anyway!”
ADDRESSING THE KIDS
We had a great experience when my daughter was young when a little boy repeatedly pushed Téa. At a gathering for a friend at the home of one of their friends; someone I hadn’t met before and in a house we hadn’t been to, Téa, who loves all things with buttons was drawn to a beautiful festive wall plug. The first thing she did when we arrived was wiggle her hand out of mine and walk right up to it. With poor gross and fine motor skills, her interest and delight meant she swatted it. Seeing this, the son of the acquaintance came and slapped her hand away. Then he pushed her. When she went back (never looking at him), she got pushed again. And then a third time.
Wondering where the hell I was while my infant aged, special needs daughter was being pushed?
Observing, from a few feet away. The first thing I did was look at the face of this little boy. I was looking to see if there was malice in his expression. Had there been, I would have scooped Téa up and kept them apart from the very first encounter. What I saw were surprise and questioning, and what I understood is that he couldn’t understand why this little girl was trying to smash things in his house.
Here are the three tips for addressing kids:
1. Observe the intention of the interaction. Is the child who is interacting with yours rude/mean/insensitive or are they confused or unclear about how to handle themselves or the situation?
2. Be swift. Once you’ve identified the intention be quick about intervening and be clear. For me, it looked like this: “NO. You may not hit her.” I didn’t approach them because Téa was just fine and smiling contentedly. Then, with the push, I came to Téa’s side, placed my hands on her sides and said “Pushing is not okay either. My daughter is learning to be gentle. You may use words to remind her or you may call me for help.” I thought that would be the end of it. When it happened again and was accompanied by a change in the boy’s expression and near tears on his part, I thought he must have been feeling confused. This is when I got lower on my knees slipped between him and Téa, and gave him ideas, “Téa is slowly learning to be gentle. You can help her with that by gently moving her hand. Or you can come to me and I will make sure she doesn’t touch it. It is a very special plug. We don’t want it to be ruined.”
With that, I guided Téa towards another area. It just so happened that a beautiful Christmas tree and a laptop playing music were in the next area. If Téa could run, this would have been it — she made a bee-line for the laptop. I beat her to it and re-directed her, giving the little boy a chance to get between Téa and the laptop. As I moved away, I saw him gently placing his hand between Téa and the laptop. No pushing. No smacking. He was awesome. I HEAPED on the praise.
3. Praise with honesty and clarity. Repeat the praise often to the child and say it aloud to other adults around, especially their parents within earshot of the child. In this case, it sounded like this, “That was so gentle! So good, thank you!” and soon after, “I see you are really helping Téa be gentle. I appreciate your help.” And I MEANT it!
In all, it took 3 minutes to gain an ally in keeping Téa safe and not destroying this warm family’s home. His parents were eager to find ways to make us feel at home and I was at ease and hoped to make them feel so too.
Being alright when you’re out with a kid with special needs isn’t about what the other person is doing for you. And it shouldn’t be about doing what this guy is doing and trying to fade into the wall.
It’s about being real. About how we are being in public and how we have a chance to help others be at ease and help us stay at ease. Fact is, we have something we need from others.
And the only way for all of us, really ALL of us, to get this right for each other, I think begins with us parents of kids with special needs. Is it too much to ask? Is it unfair or exhausting? Yep. That’s why we need to build our mental muscle.