Why “What Can I Do?” Doesn’t Work

When a child receives a life-alter­ing diag­no­sis, sup­port­ers con­stant­ly ask, “What can I do to help?” The inten­tion is beau­ti­ful, but for emo­tion­al­ly exhaust­ed par­ents, it’s one more deci­sion to make. Instead of ask­ing about ways to help, here are 14 spe­cif­ic actions that actu­al­ly do—after they receive the diag­no­sis, dur­ing hos­pi­tal­iza­tion or treat­ment, and in the long, for­got­ten months that fol­low.

Immediately After Diagnosis: 3 Powerful Actions

    When care­givers first hear the news, their minds race in dif­fer­ent direc­tions. Some reach out to fam­i­ly. Oth­ers research obses­sive­ly. Some with­draw entire­ly. Every­one process­es dif­fer­ent­ly.

     When we first received the news, peo­ple offered support—but we did­n’t know what we need­ed. Look­ing back, here’s what actu­al­ly (would have) helped, no ques­tions required:

1) Google the disease or disorder 

     Tell them some­thing inter­est­ing you learned from that search the next time you see them—good or bad.

    Why this works: They’re googling it too. Know­ing you took time to under­stand makes them feel seen. You’re not rely­ing on assumptions—you’re walk­ing along­side them.

     Pro tip: If it is some­thing bad that you learned, frame it empa­thet­i­cal­ly and gen­er­al­ly so that you don’t intro­duce new wor­ries. Some­thing like, “Wow, I was read­ing about the diag­no­sis and didn’t real­ize how many things you guys are up against.”

2) Don’t just say “I’m praying”

     Even when hon­est, this phrase feels like a platitude—and plat­i­tudes don’t cut it right now. Instead, tell them exact­ly what you’re pray­ing. Text them the actu­al prayer. At mid­night. If that’s when Holy Spir­it brings them to mind.

     Notice you aren’t ask­ing, “How can I pray for you?” Though that is a won­der­ful ques­tion, right now they need less of a men­tal load. You telling them how you are pray­ing is encour­ag­ing and does not add a men­tal bur­den.

3) Contact the local association for the diagnosis

     Hon­est­ly, I have no idea how com­mon this is, but frankly, the par­ents and care­givers in these groups are amaz­ing and have more per­spec­tive, expe­ri­ence, and men­tal capac­i­ty than the peo­ple you are sup­port­ing. I sus­pect you would get sur­pris­ing­ly insight­ful and accu­rate answers if you ask what they rec­om­mend for a sup­port per­son to do.

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During Hospital Stays & Treatment: 5 practical helps

      Dur­ing a hos­pi­tal­iza­tion is one of the best times to think about prac­ti­cal ways that you might be able to light­en the load. When a child is in the hos­pi­tal, sched­ules run tight—sometimes because there is an old­er kid in the pic­ture or work sched­ules need to be jug­gled. Many times the care­givers are not spend­ing a lot of time at home, so prac­ti­cal help can make those pre­cious few min­utes as rest­ful as pos­si­ble. Here are a few ideas to get you think­ing in new direc­tions for what to do when a child is hos­pi­tal­ized.

1) Make breakfast burritos (not dinner)

     Oth­er peo­ple may be gra­cious­ly vol­un­teer­ing to make din­ner. Those are def­i­nite­ly help­ful. How­ev­er, I can tell you that if the fam­i­ly you’re sup­port­ing has to dri­ve to ear­ly morn­ing appoint­ments or join the morn­ing com­mute to the hos­pi­tal for a while, they will adore you for mak­ing morn­ings that much smoother.

     Pro tip: Make them freez­er-friend­ly. Wrap indi­vid­u­al­ly in foil, label with reheat­ing instruc­tions.

2) Ask if you can bring them coffee (and sit with them for 30 minutes)

     There’s usu­al­ly a lot of wait­ing at the hos­pi­tal. Sip­ping some­thing is a nat­ur­al way to pass the time. Hos­pi­tal cof­fee… often leaves a lot to be desired. Maybe you want to pick up their favorite spe­cial­ty drink or bring a decent cup from home. Even if it’s just cof­fee from the hos­pi­tal cafe­te­ria, it tastes bet­ter with a famil­iar, non-med­ical face. See­ing you will break up the day. If you have 30 min­utes to spend sip­ping cof­fee with them (or walk­ing the grounds), being with them where their child is will breathe life into their spir­its. If the care­giv­er you are sup­port­ing is an intro­vert, chances are they would still appre­ci­ate this time invest­ment, but being mind­ful of their ener­gy sta­tus will also be great­ly appre­ci­at­ed. 

     Pro tip: Text them ear­li­er in the day to see if they know when rounds will be. They will want to be in the room dis­trac­tion-free to get updates from the med­ical team.

3) Ask if you can take care of the trash and recycling bins for the week

     While this is a ques­tion, it’s a very spe­cif­ic yes-or-no, help­ful ques­tion. Some­times logis­tics cause the most stress, because you think of the issue when you are already at the hos­pi­tal or morn­ing-long appoint­ment. So, prac­ti­cal, con­crete offers help. 

     We had one gen­tle­man vol­un­teer to put up Christ­mas lights for us so that our home felt fes­tive and “nor­mal.” We only had two strands, so we end­ed up declin­ing, but the thought­ful­ness was incred­i­bly encour­ag­ing and mem­o­rable.

4) Offer to fill their gas tank

     Mul­ti­ple trips to the hos­pi­tal add up quick­ly. Small gestures—meeting them at a gas sta­tion to fill their tank or Ven­mo-ing gas money—make an out­sized impres­sion.

5) Ask if they need bluetooth headphones or a small bluetooth speaker

     Some fam­i­lies may want to play qui­et music while they are at the hos­pi­tal or leave on for a young child, when they aren’t there. Hos­pi­tals will have dif­fer­ent rules and this can be an expen­sive sug­ges­tion, so check with the fam­i­ly first. How­ev­er, there are cost-effec­tive options and it can be a thought­ful gift that helps the fam­i­ly feel like some­thing about the for­eign envi­ron­ment is homi­er and maybe even in their con­trol. 

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Long-Term Support: 6 Ways to Show Up When Others Disappear

     Expe­ri­ences vary wild­ly for how com­mu­ni­ties han­dle fam­i­lies with (new) diag­noses of spe­cial needs. Sad­ly, there are a lot of sto­ries of fam­i­lies grow­ing con­sis­tent­ly more iso­lat­ed or for­got­ten over the long-haul. They don’t get to choose a dif­fer­ent life. Hope­ful­ly, they make choic­es that encour­age friend­ship and rec­i­p­ro­cal bur­den-bear­ing, but you can choose to change their lives by remain­ing with them. Here are a few game-chang­ing atti­tudes and mis­sions to make a dif­fer­ence.

1) Accept slow responses without pressure

     Some­times there are no more words by 10 AM. Some­times there are 1,001 things to do, just like your life. Some­times there are ther­a­pists at their house ear­ly in the morn­ing and a social work­er sched­uled for mid­day. They may have acci­den­tal­ly marked your mes­sage “read” and for­got to cir­cle back. Be okay with that. Your grace makes you a safe per­son.

2) Ask about their weekly schedule

     You aren’t offer­ing any help here necessarily—you’re just under­stand­ing what their pos­si­bly very dif­fer­ent sched­ule looks like com­pared to a typ­i­cal fam­i­ly’s. It helps them know you aren’t assum­ing any­thing and that you care.

     If an event lines up to go to with them (like a bas­ket­ball game) and you are remote­ly inter­est­ed, ask to join. You show sup­port for them and whichev­er kid is involved, and you have a bit of time to talk.

     If you have kids involved in sim­i­lar events and can offer a ride occa­sion­al­ly, that can be a big help too.

3) Allow (and show) genuine tears

     Even the most stal­wart per­son has to show emo­tion some­times. Exhaust­ed care­givers might be a bit quick­er to show them, espe­cial­ly around peo­ple they con­sid­er close. If the per­son you are sup­port­ing tears up telling you some­thing, respond com­pas­sion­ate­ly and allow your­self to tear up too, if appro­pri­ate. Espe­cial­ly if you don’t usu­al­ly feel com­fort­able show­ing emo­tions your­self, this can be very pow­er­ful, so long as it’s gen­uine.

4) Offer a listening expression

    If you’re close enough to hang out or are get­ting to know them and they make a state­ment that shocks you, do your best not to show it.

    I worked with mid­dle school­ers for years in min­istry, and one of the best pieces of advice I received ear­ly on was to show as lit­tle emo­tion as pos­si­ble when they said some­thing shock­ing. They might be sub­con­scious­ly test­ing whether you’re a safe per­son. In this case, your pro­cess­ing friend isn’t inten­tion­al­ly test­ing, but they’ll get the feel­ing real quick that they’re too much and should­n’t be so hon­est if you have a big reac­tion. Hav­ing few­er peo­ple they can be hon­est with will slow their heal­ing.

5) Stay the course

     Many fam­i­lies feel for­got­ten with­in 3–6 months. You can change their lives by stay­ing. Here’s how: 

     Text the care­giv­er on a ran­dom Tuesday—eight months after every­body stopped ask­ing how things are going.

     Reach out about grab­bing cof­fee one more time than you think you should.

     Sit next to them—on pur­pose. 

     When it is nat­ur­al, encour­age your kids to include their kids. You do not have to be best friends; nei­ther do the kids. Legit­i­mate rela­tion­ships for the kid with spe­cial needs are few­er and far­ther between than we’d like to admit, though. Their sib­lings can have a tougher time, too, so when pos­si­ble and not ter­ri­bly incon­ve­nient, sug­gest inclu­sion.

6) Be their safe person

     Don’t share what they tell you with­out per­mis­sion. Don’t require them to have answers worked out. Don’t ask for progress reports. And please—never say “It’ll be okay” or “God won’t give you more than you can han­dle.” Those phras­es feel like gut punch­es. Con­sid­er shar­ing some of your cur­rent life strug­gles, too. Hope­ful­ly, the rela­tion­ship is a two-way street. Help them remem­ber it is, if it’s got­ten a lit­tle off track.

These 14 actions are tru­ly help­ful on prac­ti­cal and rela­tion­al lev­els. If you want to under­stand more of what’s real­ly hap­pen­ing in the hearts of par­ents fac­ing tough sit­u­a­tions, Siege of the Soul pulls back the cur­tain on the spir­i­tu­al and emo­tion­al bat­tle most peo­ple nev­er see. Read Chap­ter 1 free as a first step in dis­cov­er­ing the com­pan­ion­ship that changes every­thing. Your sup­port mat­ters more than you know.

Bri­anne Sut­ton is the author of Siege of the Soul, a book for par­ents nav­i­gat­ing faith, espe­cial­ly after an unex­pect­ed diag­no­sis. With a back­ground in neu­ro­science and per­son­al expe­ri­ence with spe­cial needs par­ent­ing chal­lenges, Bri­anne writes with empa­thy and insight for weary souls seek­ing hope.