Few people would deny that a medical needs family needs outside support. However, when the crisis hits and emotions are high, it can be hard to figure out exactly how to navigate that area. Now that I'm a ways down the road, I want to share my thoughts on how to support a family with high medical needs. Granted, this is from my perspective, so it may not be the perfect advice for everyone in every situation. It is taken from my personal experience and numerous discussion in my various support groups.
Mind Your Words
When a situation arises, we all want to find the right, comforting words. While words can be helpful, they can add an additional burden if they aren't planned carefully. Most families simply want to be acknowledged, so don't feel pressured to come up with something grand and profound. Let them know you are aware and thinking of them. There are a lot of common phrases out there, but I would urge you to steer away from them. I struggled with the phase, "God won't give you more than you can handle" for a host of reasons. There are other common ones around "special children" that I know have been challenging to receive by other parents in similar situations. They are phrases that sound good on the surface but can feel undermining when you're deep in the moment getting the biggest dose of reality life has handed out. But the good news is that it's far easier than you think. No fancy wisdom necessary!
No Really, Mind Your Words
Perhaps you've read an article about a miracle cure for the condition in question. Maybe you've heard that a particular chosen treatment can have serious side effects. You may have heard about the possibility of a diet or alternative treatment. Now is not the time. Let me repeat. Now is not the time.
I understand you may simply want to help, but in most situations, you are sending a message that you don't trust the parent's decision, further isolating them. Most parents agonize over the decisions they must make. If they are at the beginning of a diagnosis, it may mean a series of fast decisions based on an ever-changing situation. I am continually floored at how much information families seek out on my various support groups. They ask a hundred questions of their team, they read articles in the PubMed database, they set up phone consultations with the nation's top experts, they contact alternative providers, and they wade through horror stories on Google. Then they make the best decision they can.
If you truly want to help, ask if they'd like to talk about things, and be prepared to stay neutral. Being able to have a safe sounding board was incredible. I wanted to talk about everything in great details. It helped me process the situation. And sometimes rehashing everything with my husband or closer family members wasn't appropriate. They were spent and needed to deal with it in their own ways. One of the sweetest gestures was when a friend wanted to know the details of our situation and she simply let me share. There was no advice and no judgement. When I finally paused, she simply said, "Wow, that's sounds really tough. I'm sorry." Those were quite possibly the best words anyone said to me through the early years of this journey.
So if you want to ask to truly listen, please do. But please don't advise unless specifically asked.
Get Creative with Meeting Daily Needs
Providing meals is often the first thing many people offer. This is a great starting point. But you can look for other simple opportunities to serve that are equally necessary. Providing meals isn't everyone's strong point. And in some instances, the medical needs themselves may force complicated dietary changes.
You can also offer to run a load of laundry, wash dishes, or complete basic yard work tasks. One of the best gifts I had was when a group of neighbors watched my kids and cleaned my house. It had reached an embarrassing level, and I was too overwhelmed to deal with it in the way it needed. But in that instant, they had seen what my current need was and met it.
If a meal isn't your thing, paper plates, toilet paper, and other essentials left on the front porch can be a life saver. Stamps, paper towels, trash bags, cleaning wipes, and laundry detergent are all necessities that are easily forgotten. If the family has other children, a bag of healthy, prepackaged snacks can relieve pressure between meals. You can also ask if there are any errands that you can help with, such as making phone calls or picking up items from the store. The logistics of managing a medical condition can be never ending. The idea of having something I'm desperate for magically show up at the door can change the entire day. And sometimes being a point person for other friends and family can relieve the burden of keeping everyone in the loop.
Whatever you think you can offer, be specific. Find something you would like to offer from your strengths and offer it.
Don't Forget Emotional Needs
While the physical, daily needs are important, don't forget the emotional needs of those involved. Sometimes the biggest gift you can give is simply to listen. That's also a great way to get ideas for what needs are more pressing. If possible, offer to watch the children so the parents have time to themselves, either solo or as a couple. 20 minutes and a Starbucks gift card can go a long way to giving a weary, stressed parent clarity and a chance to feel centered. Encourage and assist with date nights. The divorce rate among children with high needs is phenomenal. But I know from experience how tough it can be to stay connected through the thick of it.
Don't Take Their Behavior Personal
It's hard to even think about the place I was once in. It was a place of profound frustration and sadness. It was a type of overwhelming situation that deafens you to life. It's as if everything was in gray scale. On top of the emotional situation, I was exhausted to a point I didn't know was possible. I was scared for my child. I wondered what I had done wrong. I didn't know how I was going to manage the tasks for the day. I didn't know how we would pay the medical bills. And all the while, I'm living with a spouse who is in the similar situation but dealing with things his own way. The bottom line, I may not have been entirely rational from moment to moment.
Please don't take things said during these moment personally. If the affected family members don't seem like themselves, they probably aren't. They need your grace and your patience. And it may take longer for them to heal than you realize.
Don't Let Them Disappear
In the heat of the moment, it's hard to articulate what you need. The focus becomes solely on the child and the immediate situation. It's common to hear the phrase, "Let me know if you need anything." The problem is that often the family at the center of the crisis may have such little awareness of their own needs that they can't articulate them. As well meaning as that phrase is, it puts the onus on the family to reach out when in reality, they are probably struggling to meet the basic requirements for surviving the day.
The problem can be further magnified by the personality and disposition of the family involved. In my case, I don't like to bother people with my problems. When you combine that with the fact I'm an introvert, it means that reaching out is difficult on my best day. The idea of picking up the phone to ask for help feels like one more overwhelming task on top of a situation that's already brought me to my knees.
Instead, keep tabs on the family. You don't need to check in every day, but the occasional suggestion of what you can offer from time to time can mean a lot. If nothing else, let them know you are still thinking of them. Keep inviting them to your life and showing up in theirs. The reality is that the relationship may be one-sided until things are under better control. Just make sure they aren't forgotten.
This month's topic for the series Parenting Children with Special Needs is support. You can read all of the various posts here:
Supporting Yourself and Your Child with Special Needs | Natural Beach Living
Am I Going Crazy? | Every Star is Different
Tips For Supporting A Child With Trauma History | STEAM Powered Family
Special needs parents: we all need support (even you) | My Home Truths
12 Things That Special Needs Mom Needs from You | The Chaos and The Clutter
Simple Ways You Can Support Special Needs Parents | B-Inspired Mama
Classroom Supports & Accommodations for Kids with Hyperlexia | And Next Comes L
Finding Support: From The Wind in Your Life | 3 Dinosaurs
A Letter to Parents with a Child on the Spectrum | Carrots Are Orange
Supporting a Family with High Medical Needs | Grace and Green Pastures