So I want to share a few things that have worked for our family when we find ourselves swinging on the end of our rope. Please notice I did not say your family. I don’t know what your kid with I/DD’s or your families need and I wouldn’t insult your intelligence by assuming I do. Neither do I know what’s worked for you when you’ve come to the end of your ropes; therefore take what helps you from the following and leave the rest for someone else who might use it. And if you want to reply to this post with ideas that you think might help others, please do. It takes a village, right?
Money: Unless your initials are D.T., your dad probably doesn’t have a spare million to send your way when things get tight. Neither did mine; but my husband and I had to check our pride at the door and accept our parents’ gracious offers to chip in when the insurance company straightened us out on that nonsense about our son needing therapy. (We’ll get to them in a minute.)
If family isn’t an option (and as I write this I am aware that we were privileged to have family that could provide help) look to options including:
- your local Arc’s Family Support Program for help with disability-related expenses: http://www.arcdc.org/family-support/
- providers that offer fees on a sliding scale or need-based pro-bono work
- clinical studies that offer discounted or free services to participants
- discounts provided by pharmaceutical manufacturers
- the U.C.P. medical equipment exchange http://ucpmidtn.org/programs-and-services/equipment-exchange/
- the Healthcare Marketplace for insurance rate comparison shopping
Advocacy: When you find yourself dangling from the end of your rope over a sea of discouraging emails, an advocate can be a lifeline. While some advocates charge for services, there are also free advocacy resources out there, including:
- your local Legal Aid Society for advice on dealing with insurance bullies
- your local STEP volunteers who can accompany you to I.E.P. meetings
- members of your disability community who have dangled from that rope too, like Autism Tennessee’s mom-manned help line, and in times of desperation:
- A friend dressed in grownup clothes who can sit beside you and look official at a meeting (not making this up, been there, worn that navy suit.)
- Your own documentation: keep notes, time lines, and especially dated emails that you think will come in handy later. You’ll want to kiss yourself when your files save the day. Go ahead, we won’t judge.
- Your local clergy, community organizer, or other officials who may see your situation as worthy of time and attention: it never hurts to ask!
Patience: And let me preface this part by saying there’s a special place in Hell’s waiting room for well-rested speakers who perkily provide suggestions for resting or calming down that most of us couldn’t pull off if we wanted to. I don’t pretend to know what your days (or sleepless nights) are like, or what pushes your buttons, but here are some thoughts on what to do when your patienceometer is on E – sans the spa date and rose petals.
- Remember that just a little regrouping time can make a big difference. Personally, I enjoy 10 minutes of weeding because unlike parenting, it provides me with immediate and visible results.
- Talking to a friend who will listen while neither providing suggestions nor pity is also a personal favorite. If you have a friend like this, bake them some brownies; they deserve it.
- Regular exercise: not sexy but very helpful. If you can’t get to a gym consider an app like Dan DeFigio’s 2016 Shape-Up Kit with downloadable workouts that you can buy at the price of your choosing and do anywhere. https://gumroad.com/l/LWFG Exercise does nice things for your brain and provides much needed stamina.
- Leaning into your faith: this one is a double punch for those of us who are fortunate enough to have a sustaining faith and a community of folks with whom we share that faith and mutual support. Which brings me to the dilemma with which many of us in the disability community struggle: always feeling like we’re at the receiving end of said support. This is why
- Paying it forward by doing something nice for somebody else is a great patience builder. I’m not going to say any of that junk about realizing there are people worse off than we/our family members are; that’s disability porn. I’m suggesting that doing something nice for someone else (when our lives allow for it) is a way to pay forward the good that we’ve received and can be a real mood lifter as well. It doesn’t have to be anything monumental, just a simple gesture that lets others know they’re thought of. And along those lines:
- Practice gratitude. There are all sorts of studies out there that show positive effects of daily reflection on the things, people and circumstances for which we’re grateful. This is not the same as living in denial of life’s hardships or failing to address the injustices that come with living in our community. It just means that when possible, we remember the things that are going o.k. in life; and to share gratitude with the folks who do provide us with love and support in its many forms. I thank you for reading this and for (I hope) sharing your ideas with others. Peace!