I don’t have to read an article to know that the stress level of special needs parents is like that of soldiers in active duty combat — I know because I live it. Even though I know rationally that I am not, sometimes I feel very alone. Even though I know rationally that it’s not true, sometimes I feel like nobody gets it, nobody understands, nobody cares. I do have some wonderful friends who want to help but can’t: either they, too, are special needs parents, overwhelmed with their own families, or they are parents of neurotypical kiddos who just don’t know how to be helpful. Those friends have become more and more distant over the years; my time and my ability to be a good friend first is super limited and they end up avoiding me because it’s easier than being in the way, awkward, or accidentally insulting. But what parents of atypical kids need most is for other parents to know how much we need you. Please forgive us for being lousy friends sometimes. Stick it out anyway. Just engage with us, without worrying about saying the perfect, right thing. See us, and see our kiddos. Help your kids want to be our kids' friends. Here’s how.
Come To Us
Be willing to come to our house without expecting to be entertained, knowing the visit may not last long. It’s easier for us at home; outings come with concerns about accessibility, infection, sensory overload, and climate control. Know that we make lousy hosts: the house is a mess, you’ll have to help yourself to coffee, and our kid might tolerate only an hour of company. But come anyway! A visit gives us some adult interaction while allowing our daughter to have a playdate like any other kid.
Please help without asking. Once, our friend came over and helped us deep clean the kitchen while we talked. Walk around with us at the playground or the party. We can’t sit on the bench and talk while the kids play independently, and we’d much rather talk with you than be the lone adult with the kids on the climbing structure.
Bring dinner and just leave it on the doorstep or come in and eat with us!
If you stay over, offer to get up with the kids so we can go back to sleep for a few hours. Sleep is the greatest gift you could possibly give us.
If our kid is hospitalized, please visit us there. Don’t surprise us, but please visit, and bring some coffee and fresh fruit or veggies. Stay while she sleeps so we can take a quick shower or grab a bite. Bring us clean clothes or a book, and please ask what the rest of our family at home might need, too.
Trust That We Know What We Are Doing!
Please give us the benefit of the doubt. Nobody knows our kid better than we do. Assume we have done our own research, have a team of doctors, and are doing everything we can. Suggesting “maybe you should… ” is condescending. Progress might look slow to you, but that doesn’t mean we are coddling her or that she isn’t working hard. Unusual behavior is reflective of the disability, not lousy parenting. If our child is safe and we are not concerned, please just let her be, or ask us what to do and follow our lead.
Allow Us To Have Our Own Experience
How you imagine her disability might be very different than how it looks in everyday life. Saying “well, that sounds like any 6-year-old...” is isolating. We feel most supported when people listen without trying to commiserate or connect our situation with something that is going on in their lives.
Downplaying the issue by exclaiming “You’d never know she has such a severe disability; she seems so smart and engaged!” is similar. If you aren’t sure what to say, you can say that. We understand.
Celebrate Our Kids
We welcome questions about our atypical child. This is our everyday life; you can ask anything without feeling like you’re overstepping. Small things can be big for our kiddo: zipping a jacket, having a conversation, reading a word. Validate her efforts when you notice them and celebrate tiny milestone moments with us. We recently had a friend pull us aside to say what a difference she saw in our daughter’s walking; we loved having someone acknowledge our child’s hard work, and ours too.
Talk To Us — & Listen!
We need adult contact! Talking about something — anything — reminds us that we are a real person. Call or text to say you’ll stop by in a half hour or ask if we have time to pick up the phone to chat. Don’t wait for an invitation. Just reach out, and instead of vaguely saying “let’s do lunch soon,” say “let’s go to our favorite sushi place next Thursday at 2,” to get us to commit. Tell us about your life. We want to know how your kids are, your work, and everything else that matters to you. Please share your kid’s successes with us; we want to hear about them!
We don’t expect you to fix anything; we just want someone to listen.
Please ask questions! It’s not negative or taboo to bring up our child; on the contrary, it’s helpful if you do, so we don't always have to. If you don’t know what to say, that’s OK. We don’t expect you to fix anything; we just want someone to listen. You can ask in a vague way, “so what’s been going on with your kiddo lately?” That leaves space for us not to share too much if we aren’t ready to, and lets you show you care without having to retain all the details. We don’t expect you to remember everything!
Asking how we are is not the same small talk question it is for most people. Be ready for an involved answer! In response, acknowledge the disability instead of pretending you don’t see it. Disability is real, and we need to feel validated. Listen with empathy, and instead of replying with “you’re such a great mom. I couldn’t do what you do,” which comes across as dismissive, you can say “that sounds really hard. I’m sorry.”
In between visits, please text us occasionally to check in.
Don’t Take It Personally
Don’t give up on us socially. We forget about texts and emails, and we often can’t get to the phone. It’s not personal! We turn down about five invites for every one we can accept due to appointments, therapies, illness, or just plain exhaustion. We promise, we still want to see you! So even if we’ve said no five times, please ask a sixth time and forgive us for the first five. If you aren’t sure the event you’re planning will work for our kiddo, you can say so when you invite us and let us decide.
Our daughter treasures these invites, and she knows when she’s not invited to something everyone else is.
Then please understand if we need to cancel plans at the last minute or leave early. Sometimes we can’t show up, or we have to leave suddenly no matter how crazy or rude it seems. If you can, help us pack up and get out, and if we missed cake at a party, pack up some for us or drop some off later.
See Our Kiddo For Who She Is
Please talk directly to our daughter, even if she is nonverbal or doesn’t make eye contact. Encourage your kids to do the same. Talk to them about her before coming to visit, and ask them to include her in play, and to ask any questions they’d like to about her disability. Ask her about her pink wheelchair or her hearing aid or other adaptive equipment, sure, but also about anything you would ask another kid: her t-shirt, her hairstyle, her teacher, her favorite food or movie. And if our kiddo isn’t up for interacting further, it’s OK to let her be. Please love our child as she is, not as you think she should be or could be.
Please, even if she’s not your kiddo’s BFF, invite our daughter to birthday parties and other larger events with room for one more. Feeling included helps her navigate social situations. It also helps your kid be more inclusive. Our daughter treasures these invites, and she knows when she’s not invited to something everyone else is. When you do invite her, please be try to be sensitive to her needs regarding accessibility, foods, and activities. If you aren’t sure about something, just ask us, and please don’t take offense if we invite ourselves along. We don’t really want to be the only parent at a drop-off party; we are just trying to keep our kiddo safe.
Let Us Off The Hook
Ask “how can I help?” instead of saying, “let me know if you need help,” because we do need the help but will never, ever ask for it. Ask us how to feed her, bathe her, give her medication, take her to the bathroom. Write it down so you won't forget. Having someone know how to do the daily tasks is invaluable. And if that’s too much, just ask us how to show you how to hold her, hug her or give her a high-five. She might like that!
If there’s a bake sale or other school thing, please offer to take our share of the work if you can. We feel obligated and end up staying up all night to bake cupcakes or stuff envelopes when we have a full plate already. We can’t volunteer to chair a committee or be a room parent, but if we can take something smaller on, we will. We love helping with an activity or coming in to read to the class, and we wish we could do it more.
Do you want to give us a gift? That’s so kind! We don’t need another toy. Give us a gas card instead, to help with travel to and from endless appointments. Or a gift card we can use for things you might not realize our daughter needs. If you really want to get crazy, spring for a house cleaning.
Remember Our Neurotypical Kid Too
Offer to pick up our other child after school or invite her to your house or the movies. She wants to play with her friends like a regular kid instead of tagging along to her sister’s appointments. When you invite her for a sleepover, we get to put our atypical child to bed without feeling like we are failing someone else. Please let us know that when our kiddo has to go to the hospital or has some other crisis, our other child is welcome at your house.
Also, please tell us about activities that our typically developing children might want to participate in, because we are often out of the loop. We appreciate this!
Stick Up For Inclusion & Disability Rights
It’s so hard to be the only voice, and we shouldn’t be. Please stick up for disability rights, special education, and inclusion issues in schools and community settings. Inclusion benefits everyone, not just our kid. Ask us questions to better understand the merits of inclusion. Take the time to read up on her diagnosis and ask us questions. Tell your kids about our kiddo and about other children with disabilities that you know. Show them pictures and videos and bring them when you visit us. Turn your children into allies. Share information to other parents of typical children to encourage widespread support of inclusion.