Sharing Empowerment, Positivity, and Joy
As special needs parents, it can feel like we have zero time for ourselves. We might even laugh if someone suggests ‘self care’ to us because really, when would we have time for that?
But, is it possible that you are missing out on opportunities to take care of yourself in little pockets of time? Self care doesn’t have to be complicated to be effective. Even if you only have five minutes, you can do something that can have a big impact on your mood.
Here are some ideas to get you started:
What’s your favorite way to practice self-care when you only have a short amount of time to do it?
A few years ago, I came across the book “Not Quite What I Was Planning: Six-Word Memoirs by Writers Famous and Obscure.” So much can be said with just a half dozen words, and I loved the idea of explaining my current life situation in six words. And, it’s been an evolution.
My first six-word life description after Julia was born was “Too much worrying ruins nearly everything.” I don’t think I’m alone in being a parent that worries. And, when your child has complex medical and developmental issues, the amount of things there are to worry about multiplies. At that point in my life, the worry was nearly overpowering me, and I knew it. However, the twisted up part of worrying is that even if you recognize it, it can still be hard to control it. I knew that my tendency to hold on tightly to my stress (an understatement) was ruining my happiness and dragging down those closest to me. But, I needed to find better coping...
Last year, my husband got me a FitBit for my birthday. That gift inspired me to give myself an ongoing gift of self-care: I’ve been walking 10,000 steps at least three or four times a week while listening to podcasts. I’m proud to share that I’ve walked more than 750 miles in the last eight months.
That means I’ve also listened to hours and hours of podcasts. One that I’ve especially enjoyed is Life Coach School with Brooke Castillo. In one episode, she shares a model that I call the ‘Empowerment Formula.’ The premise of her model is that by understanding and directing your thoughts, you can change your feelings and actions, which then leads to results. It’s all about understanding how to empower yourself to get the results you desire.
I feel like the model is simple to understand, but can be really hard to put into practice. I’ve been using situations in my life to see how I can change not only my own...
When I was younger, I would sometimes find myself thinking about how I would handle adversity if and when it came my way. I don’t mean disappointments or small setbacks. I wondered how I would react to a really difficult life circumstance. I thought about whether or not I had it in me to behave with strength and grace when things got really hard.
Then, at a routine 20-week ultrasound during my second pregnancy, I started to uncover the answers to those questions. I learned that when faced with a really difficult situation, sometimes I reacted with strength and grace. But, at other times, I was overcome with grief and very, very angry.
Through my 17+ year journey with parenting a child with profound disabilities and extremely complex medical needs, I’ve learned three important lessons. I don’t think these things are unique to me; instead, I think many people who are facing adversity, including special needs parents, have uncovered these truths on their own path to...
Does it seem like bad, yucky, awful, unfair things are always happening to you and your family? Is there ever an upside to these bad things? Do you have any control over them?
How did you answer those questions? If you feel like difficult circumstances are always happening to you, and nothing good ever comes out of those difficulties and you have no control over them, you might benefit from reframing your adversity to uncover something more positive.
I am not a delusional optimist. I think that it is absolutely true that our kids with special needs often have awful and unfair things happen to them – things that impact the quality of their life and the rest of the family as well. But, as soon as we start feeling like nothing good ever happens to us or like we have no control over our situation, we’re giving away our own power.
What would happen if you re-framed the situation to find the answer to this question: What does this challenge make possible?
The more difficult...
True confession: I spend a lot of time on Facebook. My husband and kids have made comments about how much time I spend on my computer, and they’re not wrong. However, I don’t think I use Facebook in the same way most people do. Sure, I spend some time following what my friends are up to, and I watch a funny video or two once in a while. But, for me, Facebook is primarily a ‘research’ tool. I spend the majority of my time on Facebook learning more about how I can help Julia, either now or in the future. I belong to at least several groups that provide support and resources related to one or more of the medical conditions Julia has, and I have created a complex system of saving and categorizing posts that I think might be useful someday.
With so much of my time spent trying to stay on top of or ahead of the challenges that have already or might someday impact Julia, I decided to think about whether or not the time and energy I spent on Facebook was a productive...
Are you a parent who loves taking your kids on adventures or do you prefer the convenience and comfort of home? Even if you’re an active, extroverted person who loves adventure, outings can be challenging when you’re a family that includes a child with special needs. And, to be completely honest, sometimes those extra challenges make me second guess whether or not the outing is worth the effort and the worry.
Earlier this summer, my daughters and I had the opportunity for a girls night out. One of our favorite bands, Home Free, was performing at a county fair less than two hours from our home. But, with my husband and son away at Boy Scout camp, I wasn’t sure if I had the moxie to take the girls on my own.
This decision came down whether or not my hopes were stronger than my fears.
How would Julia handle a late night out? Would the change in her routine lead to extra seizures?
Would she have a big seizure that required rescue meds? How would I give...
I recently wrote an article for Exceptional Parent magazine about making connections when your child has a rare disorder. Over the years, I’ve found that you can truly rely on other special needs parents for advice, friendship and support.
Recently, there was a meme circulating around the special needs community about what happens when a special needs parent falls in a hole. The theme of the meme is that when you have a child with special needs, the only person who you can truly count on to help you is another special needs parent. The meme implies that others, such as family, doctors, bosses and charities, don’t truly understand and aren’t very helpful.
The first time I read it, I found myself nodding in agreement. But, after reading it again and thinking about it for a while, I wasn’t so sure how I felt about it. While I agree 100% that there are times that only another parent who’s shared similar experiences can provide the support you need,...
In my ebook ‘Choosing Joy,’ I talk about self-limiting beliefs – the long list of things I starting telling myself would be impossible after we learned about all of Julia’s medical, developmental and physical challenges. Camping was one of those activities I thought we would never be able to do as a family. Some families might not be disappointed to miss out on camping. But, I’m married to an Eagle Scout, and we have two sons who are Boy Scouts, so camping is a thing for us.
Luckily, we’ve discovered a way to make family camping a possibility. A few years ago, we learned that our state has handicap-accessible cabins in several state parks. Those cabins can be rented quite affordably by anyone who has a family member with disabilities, and priority is given to those who would not be able to camp without accessible accommodations.
Julia takes a lot of medications - at last count, she gets upwards of ten different medications each day, many of them given multiple times throughout the day.
The sheer volume of medications Julia needs means that we are measuring and dosing medications for a significant amount of time each day. To make things easier and to ensure that she gets her meds accurately and on schedule, we've spent some time developing a system that works well for all of Julia's caregivers.
There are three key components to the system:
We've created a spreadsheet in Excel that lists each and every medication, including the time, dose and any special instructions (such as if the med is stored in the fridge, how much water it should be mixed with, if it needs to be given with food, etc.). Each and every dose has a box for the person who gave the medication to initial. That way we can track if the med was given and make sure two caregivers don't accidentally duplicate...