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Caring for People in Pain Parenting

Supporting Parents of Teens & Children In Pain

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I’m reading a book called The Midnight Library, by Matt Haig. It’s a fantasy – a parable really – about regret and depression and building a better life.

Sounds odd for a book I picked because it was billed as ‘a feel good novel’ about a life well lived, doesn’t it? Did I mention that the main character’s cat dies in chapter 2? And she committs suicide by page 24? (She gets better.)

But it is, in fact, a book about choices and how the choices we make are what build a life worth living.

Pills Pain and Problems

I’ve started to get into the funny and uplifting part of the book. I just highlighted the quote “Never underestimate the big importance of small things.” It reminded me of the 1step2life app.

“Never underestimate the big importance of small things.”

The Midnight Library. Matt Haig

When my son was very very ill, his pain consumed me. Getting him to school in the morning could take hours. If he made it all.

Every time I looked at him, the first thing I checked was his pain level. Even though I didn’t ask – I knew that asking about pain made it worse – I would look at his eyes and his shoulders and the set of his mouth and rate it. How was he?

My next thought was of pills. Had he taken them? Had I filled the pill box? What if he’d skipped?

Next on my mental checklist was homework. If he was functional, was it done? If he wasn’t, what would happen if . . .

That mental checklist defined my relationship with my son. And although I loved him and he loved me, and although everything I was doing was trying to help and support him and get him better, what I was doing was a disservice to us both.

Becoming a better coach

The 1step2life app grew out of two core parts of my life. First was my experience as the mother of an adolescent in profound pain. Second my experience as a developmental psychologist, adolescence specialist, and parenting researcher. I knew – in the developmental psychologist part of my scientific brain – what kinds of behaviors supported strong relationships between parents and kids.

And I knew I wasn’t doing them.

First, I should be doing more listening and less nagging. Kids talk when parents listen, because it builds trust and they are willing to open up and be vulnerable when they don’t feel judged.

Second, I needed to balance challenge and support – demonstrating my unconditional absolute love, while showing I loved and believed in him by helping him to do his best.

Most importantly, I needed to build a relationship with him that let me see him as a whole real kid – more than his illness – and to help him see me as a mom and not a nag and a nurse. Because I really like him – his jokes, his obsession with tea, his kind of ridiculously involved invention of gaming worlds and characters. And I think he kind of likes me too.

We had lost a lot of our relationship as mother and son to caregiving.

Recording, Reminding, & Remembering

When I designed I step2life I began with what I knew about the psychology of reward and behavior change – particularly for teenagers.

The guts of 1step2life is logging.

I have always liked checklists. I do bullet journaling to organize my days. I logged all my food in MyFitnessPal for years to help maintain my weight. I’d been logging my son’s pain and triggers for years by the time I began developing 1step2life.

What I find useful about logging is that it not only records what I have done (past tense), it reminds me of what I should do (future tense). In other words, it brings my focus to where I want it to be and changes my behavior.

Where does 1step2life bring your focus in Caregiver mode?

  1. Emotions. The first part of the Daily Log for Caregivers asks you to think about your child’s (or partner’s or friend’s) emotional well being. Are they happy? What are their positive and negative mood states? For most of us, that’s the bottom line. So that’s where we start. If you’re not happy, things need to change.
  1. Compliments. Next we check in on compliments. Why? Because compliments are what psychologists call ‘positive reinforces’ – like giving a puppy a treat. Compliments and other rewards are important because they increase the likelihood the behavior that was rewarded will be repeated. So complimenting on looking good or making an effort increases the likelihood you’ll see that behavior again.
  1. Empowering. Many people who live with chronic conditions say that the worst part of it is that they lose control over their own lives. One of the most important things I needed reminding of was to let my son do for himself. I wanted so much to support him that it was really easy to do too much for him and take control out of his hands.

    It happened in lots of little ways, like bringing meals in to him, even when he was well enough to get them himself.

    Why is bringing him meals in his room harmful? I certainly did it to be nice.

    Lots of ways – all of them small. First, he wound up eating alone most of the time. It reduced his exercise, even by the small effort of making it into the kitchen. It reduced his efficacy and choice – I put food on his plate, he didn’t get to chose how much he wanted or whether the ketchup or the mustard was the better bet on his burger. It didn’t challenge him to up his coping skills, because there were days when eating with us was hard for him with his pain, but manageable. Most importantly, it told him – subtly – that I didn’t think he could do it.

    Although some days he absolutely needed that kind of support, most days he did not. By doing too much, I undermined his autonomy.

    So we have a section in Caregiver Mode for you to log actions that are empowering: letting them do things on their own, reminding them of tasks instead of taking up the slack yourself, asking for help, expecting them to do chores and care for themselves, and thanking them when they help us (reward again!).
  1. Challenge. If not stepping in too fast is one part of helping people grow, pushing them a little bit out of their comfort zone is another. Part of effective coaching is making sure people TRY to do a bit more than they’re doing right now: doing their best, focusing on effort (not perfection), fitting their schedule in with the rest of the family’s, and eating healthy.
  1. Building Relationships. Challenge and support compliment one another. The 1step2life Caregiver log builds in reminders for supportive behavior – the kinds of things that I forgot about when all I thougth about when I looked at my son and saw pain and pills.

    The 1step2life app uses logging to remind you to talk about your day and to ask your child about the things they’ve done. It prompts you to to listen and ask what they need and encourage them to stay engaged and on track. It reminds you to say you love them and are proud of them.
  1. Self care. Finally, 1step2life reminds you to take care of yourself. You have to take care of yourself so you can take care of others.

The Importance of Small Things

Lives are made up of moments. We make progress by building many small actions into our days that move us towards the goals we hope to achieve.

That’s the reason that our app is called 1step2life. Rebuilding a good life – one filled with happiness and autonomy and caring for others and strong relationships – starts with small consistent steps taking us towards that goal.

Caregiver Mode – which is unique to 1step2life – is designed to help parents and other caregivers build daily habits into their routines that make them more effective coaches.

Check out the 1step2life app!

Start where you are. Set your own goals. Take back your life. A tool for tracking goals, emotions, and success, not just logging pain. And the only app that has a mode specifically for parents, partners, and other carers that supports effective coaching and strong relationships.

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