Important Considerations

Proximity
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Support can come from many places, in many ways. Some will come through local connections and some from across the country (or even the world). Each type of proximity brings its own strengths and challenges.

In many cases, it’s most practical for nearby help to most easily step in for daily tasks - but that said, distant help can still play an important role in supporting you and your family by alleviating burdens in other ways. In fact, you may be surprised by how much strength comes from people you can’t see every day, and how deeply nearby helpers appreciate being given clear, specific ways to show up.

It can be helpful to consider there may be some people who might live out of town but travel often, work remotely or can step in during key times. Some examples include a sibling who visits monthly, a grandparent who stays during treatment weeks or a friend who helps remotely but flies in when needed.

Clarity

Getting clear on what you actually need and being clear in communicating it will be a game changer when it comes to both logistics and the load you’re carrying.   We maintain that people want to help, but need direction to do it well.   Likewise, remember that needs change over time — and so do people’s capacities to help.  Some people shine in the early crisis stages, while others are better at the long haul.  

As you already know, living a life accompanied by medical complexity means that much of the “plan” is fluid and requires flexibility. So does the team.  In many cases families find that new people enter their lives through the establishing of care connections or through school systems, for instance.  Always remember, you can gently rotate roles or take breaks from certain supports when needed.  You may even consider revisiting the makeup of your team at regular intervals (every 3-6 months, for instance).

The key takeaway here is that you, as the expert of your family, take the clarity of your need and the offers for help and make the most of what’s at hand.  In the next section we will help you identify the specifics of what you need in your own individual situation, but once you have that outlined, you can match your helpers with their strengths.

Maximization

When you complete the upcoming Needs Assessment, it might be helpful to think of things in terms of reverse engineering.  If your goal and hopeful outcome is a smooth and healthy life for everyone involved, then it will be beneficial to consider all the possible ways people can step in.  

For instance, those who are local can help with transportation (school drop-offs, appointments, errands), sibling care or playdates, household tasks (meals, cleaning, laundry, groceries).  Additionally they can help by sitting with your child while you nap, shower or take a short break and even providing in-person emotional presence — hugs, coffee chats, companionship.  

Likewise, those at a distance can help by managing online updates or a care page (so you don’t have to repeat news), sending encouragement — letters, cards, voice notes, video messages, contributing with gift cards, meal deliveries, or transportation funds, doing research: local respite programs, grants, or equipment options, and maybe most importantly, planning visits that give you something to look forward to.

Tips for maximizing local support:

• Having someone identified as your “lead” can be a great advantage in many ways – even if nothing more than serving
    as the communicator of your needs to your extended circles. Likewise, having an old-school, emergency phone chain can
    alleviate the demand on you.
• Consider identifying two or three people you can text for urgent, “I need someone now” moments. When something
    pops up, you know they are reliable and will do all they can to show up quickly.  Communicating this need and    
    expectation to them will set you up for success.

Tips for maximizing support from a distance:

• Consider designating  a “remote coordinator” — someone who can rally faraway supporters and organize logistics
    (meals, donations, communication).
• When possible, schedule visits intentionally (for key appointments or respite needs) to avoid overwhelming your calendar.