10 ways to love a special needs family
Every family faces a crisis at some point, and even close friends can feel uncertain how to help. Many of these tips may sound familiar and can apply to many crisis situations, special needs or otherwise. In our experience so far, here is what really helps.
1. Offer to pray. (And then actually do it.) As I’ve mentioned before, families living through traumatic events may sometimes find it hard to pray for themselves. Do it for them, and then tell them you’ve done it. I have lost count of the number of times someone has called, texted, or dropped a word in passing that they offered a Mass or just a single hurried prayer for us. That information usually comes at exactly the moment it is most desperately needed.
Pro tip: If you tell someone you are going to pray for her, do it right then. A single prayer, even a short one, that actually gets offered is better than a thousand that are planned but never said.
2. Ask real questions. “How is Oscar?” is my least favorite question to answer, logistically and emotionally. Instead, try specifics: “What is he working on in therapy lately?” “What’s worrying you most right now?” “Any good news to share since his last appointment?” These are just a few examples, but you get the idea. Try to scratch beneath the superficial and find out what’s really going on these days.
3. Listen to the answers. If you ask a question like the ones above, you are likely to get an answer that’s longer than “fine” or “pretty good.” Be willing to sit for a minute and let your friend really speak what’s in her heart. It can be hard to practice this momentary stillness — for your friend, too! We are so used to our busy, rushed lives that carving out a brief moment of intimacy can feel impossible. But for someone who really needs to talk, even 30 seconds of truly empathetic conversation can feel like a lifeline.
4. Affirm… without platitudes. So you’ve asked a good meaty question, and gotten a truthful answer. The next step is often the most awkward and uncomfortable. Your friend may have just dumped a heavy load into your lap. What now? Let’s get one thing straight: if it would be printed on a poster above a picture of a hanging kitten, don’t say it. (I’m looking at you, “God never gives you more than you can handle.”)
And, though I know you mean well, avoid vague encouragements like “He seems to be doing great!” You never know whether your friend just hung up after a difficult phone call with bad test results, or passed a sleepless night introducing new meds with horrible side effects.
I recommend sticking with some variation of one — better yet, all! — of three basic messages: This must be hard. I love you. I am here to support you.
5. Open up. As I mentioned last week, we are going through some stuff, but we know that you are too. Welcome to the human condition! But please, don’t be afraid to “add to our burdens” by coming to us with your own worries, heartaches, and trials. If anything, I feel like I have more compassion these days for other people’s predicaments. Look at it this way: we have an excess of distress on a regular basis, to offer up on behalf of other folks! Please, please, allow us the privilege of praying for you too.
6. Make concrete offers. I don’t know about other folks, but I have permanent decision fatigue. After wracking my brain deciding on a course of treatment or chasing to the ends of the earth for the right specialist, I have very, very little intellect left to think about exactly what kind of help I need and when.
So instead of asking “Can I help with anything?” decide what you’re willing to help with, and then ask your friend when you can do it. Ask what day would be good to come weed the garden, or pick up the other kids for an outing, or whatever floats your boat. Show up with dinner the next time you know you’ll be in the same place (especially a dinner that can go in the freezer for another time). Pick your favorite work of mercy, then show up and do it.
7. Keep inviting us. Our schedules are often hellish and often change at a moment’s notice. We are just as disappointed as you when we can’t show up to something, or worse, when we have to cancel at the last minute. But please don’t stop asking. Special needs families already feel disconnected from their regular communities.
Even if the answer is almost always no, go ahead and extend that tenth invitation. It might be just the one they need, the one that fits beautifully into a day with no therapies or emergency room visits.
8. Go the extra mile during the critical times. Oscar has spent over two weeks inpatient over the last 7 months. That’s pretty tame by the standards of many special needs families, but friends, 15 days times 24 hours is a lot of bad food and waaaaay too much Netflix.
Against that bleak background, I recall nearly every glorious moment — and oh, the food! — of the visits we had when friends and family came to see us during those hospital stays (you know who you are). I remember all the people who showed up to give our kids rides and help run our household in my absence. Even a phone call brightens a day.
9. Treat our kids like people (and teach your kids, too). In terms of our kids, you know the old saw, but it bears repeating: they are people, too. Neither rock stars nor sideshows. I love it when someone in our community greets Oscar just like they would any other baby-almost-toddler. As he gets older, this will become even more important. Would you smile and say hi to your neighbor’s kid as you pass on the street? Then please do the same. Don’t coo and fuss and treat them like heroes; don’t ignore, belittle, whisper, point, or (heaven forbid!) blurt out “What’s wrong with him?”
I know, you would never behave in such a distasteful manner, dear reader. So teach your children (and perhaps mention it to those beastly children over there who belong to those other uncouth people). Be a beacon of grace.
10. Do it all again. This one is hardest, I think. Communities are often quite well equipped to rally around a family having an acute crisis, like an accident or a surgery. But the thing that sets special needs families apart is the relentless nature of the beast. It is all day, every day, for the rest of their child’s life. We may seem like we have it all together on the surface, and yes, during some blessed periods we will reach an equilibrium of normalcy. But that equilibrium is set at a higher-than-average stress level, and it is more finely balanced (read: it breaks easily).
So even when it seems, from your outside perspective, like things are going smoothly, don’t be afraid to reach out and try one of the tips above… especially that first one!
And, frankly, if you love a special needs family well enough to read an article like this all the way through to the end, you’re probably doing a darn fine job already. Thank you for your support and care.
This is so beautifully written. Thank you so much for encouraging your family, friends, and readers to “keep asking,” to, “treat your son as they would any other child,” and also giving other concrete examples of what is helpful. It is helpful to know what to say, and more importantly, what to do. Unfortunately, too often, the military lifestyle keeps my family away from doing more than praying (or ordering an occasional pizza delivery to the door), and that is very frustrating.
But, that’s where I rely on the hope that my friends understand we all do what we can, and expect no more and no less!
Thank you for sharing your insight!
I didn’t know you were blogging until just now, and I’m so glad! It’s great to catch up a little with you & your family. Miss you, friend. And definitely sending good thoughts & prayers. xo
I have a friend that had a baby girl two months before my baby girl was born. Hers was born with special needs and I’ve walked this trail with her forbthe last 17yrs. (I say trail because it invokes the imagery of up and down, smooth and craggly. “Path” almost comes across as too easy.). Anyway, what you detail is extremely accurate and I’ve always tried my hardest to ask my girlfriend two questions: 1) How are YOU doing?, and 2) how’s your husband doing?
Divorce is rampant among special needs families and I’ve always wanted to try to help her not always be so engrossed in her child, but to help remind her of her marriage. (All contingent on how close a friendship is.).
Anyway, great information!
Thanks for visiting, Anni! Yes, military families certainly operate under different constraints than most of us. Everyone can do something. Prayer and good conversation can cross any distance!
I’m looking forward to reading your blog, too — love “meeting@ new folks online!
Miss you too, my friend. Someday, someday, we will set out for a Tarheel vacation.
I only started writing again in the last 6 weeks or so. I didn’t know how much I missed it!
That’s a great point! I often get so wrapped up in my own head that it becomes easy to neglect the people in my family who DON’T have special needs. Your friend is lucky to have your wisdom in her life.
Feeling disconnected from your community when you have a special needs family is not a military thing. It is feeling the disconnection no matter where your are. Never being invited anywhere, too afraid to ask you to volunteer, the “oh how sad” stares, the disgusted stares, the LONG stares. They often don’t bother me anymore, but what does bother me is their distance and their lack of empathy or friendliness. It is they who are losing. We are worth knowing, worth inviting, worth befriending. We are amazing and especially sensitive to you because of our heightened awareness of others. Don’t be afraid….step out of your comfort zones. You will be glad you did.
We were married 35 years before we adopted 9 children- after our oldest 5 were grown and gone. Our love and marriage is stronger b/c of the work it takes together to raise special needs children. We are so strong together.