Everybody Poops

By Aimee Sterk, LMSW, MATP Staff

the cover of the book "Everybody Poops" with pictures of a person, a horse's butt, a goose, and an apple

As a new mom, I’m pretty familiar with poop–all kinds of poop. And I’m pretty aware of my son’s pooping (or not), when he has a poopsplosion, what he’s eating that is causing what reaction… From the very beginning in the hospital, the medical professionals tell parents about tracking health and bowel movements. I even have the book Everybody Poops on my Amazon wishlist. I want my son to view pooping as something healthy that everyone does–albeit sometimes in different ways. I don’t want him to have anxiety or shame about pooping which can lead to lifelong digestive problems. Yeah there’s a lot of poop thoughts up in here.

In our office, we tend to talk about poop a lot too and bowel programs… and they came up again at a meeting yesterday. I mentioned how I frequently talk about toilet aids when meeting with professionals and teaching about low tech AT for community living. Often, I’m met with nervous laughter. That bugs me.

Rant warning here. Look, we as a society have made poop a taboo topic, but in doing so, we’ve made it so people with disabilities who need AT to assist with toileting, are so ashamed that they don’t ask for or get information about this need. Parents of young adults with disabilities continue wiping their sons/daughters for years when they could be using AT to wipe themselves. What happens when you go off to college or move out on your own and you’ve never learned to wipe yourself? There’s already plenty to learn about budgets, laundry, meal prep. For goodness sakes, people with disabilities should learn about AT for the bathroom when their peers are learning to wipe themselves. Pooping is an important, daily (for many) activity. People need to do it to stay healthy and out of the hospital. Professionals and people with disabilities need to drop the shame game and talk about going to the bathroom–and what devices and supports are needed to go to the bathroom as safely and as easily as possible. People who want to be able to wipe themselves need to be able to get information on devices that can help. People who can’t wipe themselves and need assistance doing so, need information on personal assistance care, safe toileting options, and AT for the bathroom–a note from friends in the know, bidets can be amazing!

Stop with the poop shaming!
Let’s learn a lesson from each other and from what I’m trying to teach my son. Pooping matters. Everybody poops. There are great AT items that can help with pooping and with wiping.

And for the AT info piece–this was previously published in our blog and its worth repeating here:

the freedom wand device with toilet paper inserted in the grasping end and a hand holding it

Many people invent things out of a necessity they have themselves. This was the case for Deborah Tacoma. After an accident where she broke her back, Deborah found she could not twist and reach to wipe and take care of her personal hygiene needs in the bathroom. She did some research and found various items but didn’t find one that fit her body size, arm length and reduced finger strength—so she invented one, the FreedomWand ®. It is available on Amazon.com for $10 less than the FreedomWand website.

In promoting her product, Deborah has talked to many people with many types of disabilities that have trouble wiping and taking care of all their bathroom needs but are ashamed to talk about it with their doctors or others that might have helped them find AT—people are ashamed and suffer for that shame risking skin breakdown, pain, and infections.

The FreedomWand® is an easy-to-use multipurpose, portable toilet tissue aid that can also be used to hold a razor, loofah, or ointment applicator. It has extendable reach of up to 25 inches or as few as 9 and can be taken apart and stored in the carrying bag that comes with it. The bag and wand can fit in a backpack or large purse.  Instead of a push-button release which can be difficult for some people, it has a slide button.

Our Small Changes Big Differences kits have FreedomWands® for you to see in-person and decide if they might work for you. The kits also have dozens of other devices to help people with disabilities live in the community. Find the kit nearest you and give them a call to set up a demonstration. Deborah also has a video showing how the product works.

And for what its worth, also from my new parent experience, pregnancy constipation is no joke and squatty potties really do help with constipation and that crew understands that we need to talk about poop–and even have fun with it.

What do you think? Can you help break the poop shaming cycle society has created? What AT do you use or have you heard of that helps with toileting?

 

 

Domestic Violence, Sexual Assault, and AT

By Aimee Sterk, LMSW, MATP Staff

MDRC staff members have been working on a multi-year collaborative grant from the Office of Violence Against Women in the U.S. Department of Justice. Through that work, all of our staff has been learning about responding to, preventing, and connecting to the services and supports available, for people experiencing domestic violence/sexual assault.

People with disabilities experience sexual assault and domestic violence at a far higher rate than the general population and these violations can also lead to disability. As a community, we as people with disabilities need to be aware and active in both preventing domestic violence and sexual assault and in responding to it.

How does this all relate to assistive technology (AT)?

In a variety of ways:

  1. Perpetrators may withhold people with disabilities’ access to needed assistive technology as a means of control.
  2. Perpetrators may monitor conversations of people with disabilities, especially people who are Deaf and use communication devices. This is another means of control.
  3. People with disabilities who experience domestic violence or sexual assault may need access to AT devices emergently as they move to shelters or other spaces for safety. Devices may be left behind and AT/additional personal attendants may be needed to deal with the fact that many times perpetrators are family members or caregivers who people with disabilities relied on for support. Loan closets of devices  and the ATxchange website are potential resources for use of devices while sorting out living situations, accessing services and supports, and making safety plans.
  4. Many shelters are not accessible and need to develop ways to help people with disabilities access AT when they flee a situation.
  5. Sexual Assault and domestic violence program staff may not be aware, or capable of, assisting people with disabilities who have intellectual, processing, or communication disabilities due to their own lack of knowledge and skills. Access to assistive technology can help.
  6. Apps for PTSD can be useful to survivors of domestic violence and sexual abuse. For example, I am a sexual abuse survivor and use Gratitude! for mindfulness and PTSD Coach.
  7. There are apps and devices for safety like Circle of 6 which lets you send out messages to your friends like “come get me” and gives your GPS location. Circle of 6 also can connect you to resources.
  8. Survivors who are Deaf and hard of hearing need to know their rights and the systems of help available. Some communication and relay systems keep transcripts of conversations automatically unless the user specifically requests that they don’t. Perpetrators have also impersonated Deaf survivors through electronic communication methods so shelters and survivors may want to develop codes phrases.

Do you know about domestic violence and sexual assault services in your community? Are they accessible? Have they done an accessibility audit? Are they welcoming and able to serve people with all types of disabilities?

Looking Back

By Aimee Sterk, LMSW, MATP Staff

Our son, Theodore, was baptized Sunday. Standing in front of the congregation, I was brought to tears remembering the journey we’ve been on with this wonderfully supportive group of people holding us up and getting us through. We’ve been through so much loss and grief and I’ve been through so much depression and PTSD.

Me next to my husband who is holding our son who is trying to eat his foot. We are next to the baptismal font. Our minister is crouched down in front of it talking to the congregation's children who are gathered around to hear about the meaning of baptism and to welcome Theo.

We lost two babies. My history of sexual abuse by my pediatrician combined with these losses and the exams and treatments created the perfect storm for PTSD. We’ve been through a lot. Too much to allow myself to even remember.

So–this weekend was joy and remembrance and sorrow. This week I find myself looking back too. Through some kind of glitch in the cloud, we’ve lost the public posts on our blog from the last several years. I have draft copies of most of mine saved in Dropbox. In 2015 at this time of year, I was suffering through the deepest depression I’ve ever experienced myself. I could have been hospitalized but was avoiding it. All my back up systems were breaking down. I wrote a blog desperate to find some AT or answers that worked. I want to share that blog from history here and say that even the best plans and tiers of support can’t always “fix” things. AT can help on the way back or sometimes to prevent a path down, but if you are at a lowest low, get help. Reach out and get help. My best friend and my therapist, a work colleague and my husband got me through until I could get better. If you are depressed and suicidal, tell someone and keep telling until the right team for you appears and helps you out.

In the meantime, here are my thoughts from the summer of 2015:

What do you do when your AT and mental health recovery plans fail?

I have AT, I have a WRAP Plan (Wellness Recovery Action Plan). I have lists of things to try and people to call. I have the PTSD Coach app. I have the Lotus Bell app. I have At Ease. I have my WRAP plan in an app. I have friends and family that love about me pre-programmed in my PTSD Coach app. I have co-workers who care.

And then there is depression—and for me lately PMDD like I’ve never had before—with every single diagnostic symptom. Two miscarriages, chemo, grief, infertility treatments, family challenges, fertility meds that affect my mood and cognition, PMDD, PTSD–they are all throwing their spears at me, and last week (and actually a little today) I was some kind of open-season, willing target. I was miserable, tired, hopeless, and feeling worthless—like I deserved every last bit of the awful I was feeling. I told my husband he should leave me, that I wasn’t worth his time and love. I told myself I didn’t deserve to be a mom. I looked for a job collecting carts at the grocery store because I didn’t feel worthy/up to the job I’ve loved for more than 11 years. Yoga didn’t help—started angry, ended angry. Crying didn’t help. I hated myself, my job, my marriage. I wanted to quit my job and my marriage. This month I wasn’t suicidal, but last month I was.

I read an article describing depression and thought—wow she gets every last bit of this and I feel every last bit.

Antidepressants weren’t helping. Apparently, the one I’m on doesn’t help with PMDD and I don’t want to add more while trying to get pregnant.

I wanted to throw my apps and iPhone in the fire along with my journal and lists of self-care options.

All the AT, all the well-meaning people and plans, all of it made me angry and sad. I let my therapist know I was in trouble but didn’t leave a door open for her to help—on purpose.

So then what do you do? What do you do with this kind of hopeless depression?

I knew this was PMDD. I knew I just needed to make it 24-48 hours—and hopefully not destroy myself and my relationships in the meantime. What do you do when it’s not PMDD and nothing seems to be working?

I considered partial hospitalization but dismissed it—having worked in mental health hospitals I didn’t think it would be all that therapeutic.

I went to yoga anyway. I took naps. My fishtank became AT a little—watching the fish was calming and I didn’t get angry doing/considering doing it. My dogs and cats stuck by me even as I got angry at everything and then sad and then refused to do other helpful things. I waited for it to pass. I took it out on my husband. I took it out on myself.

Thursday was bad. Friday was devastating. Saturday I mostly could hold it together. Yesterday it started to get better. Today is kind of ok.

Friday I was sure life was always going to be this way—except that I knew deep inside that I just needed to make it one more day.

Months ago in the depths of post-partum depression after losing our first child, I didn’t know deep inside that I needed to make it just one more day. The world was a deep, dark abyss. It didn’t get better the next day or the next, though then too I wasn’t suicidal, so that was the last sliver of hope I had.

Really then what do you do? When the meds aren’t helping, the plans make you want to barf, you want to scream and cry and push all the well-meaning people away? How do you hunker down and get through? Somehow I did but each time the waves come crashing, I wonder if it’s possible to make it to the other side.

Have you found things that work that you can make yourself do? Do you use any AT (apps, soothing sound machines, light therapy boxes) for depression that continues to work for you even when things are really bad?

***My take away in case I’m ever feeling like I did in 2015 again? Nap, spend time with pets, ignore all the AT apps if they are making things worse, consider a fishtank as AT, make yourself do one thing positive (yoga, a shower, a walk, sitting outside), and call for help. These are the things I will do. What works for you?

 

Go Green!

By Aimee Sterk, LMSW

I’m behind this year… way behind. With a new baby (5 months is still new right?) and going back to work after leave, I have been short on time for anything at all and have neglected my garden. My colleague Laura had a great blog about getting out and working in the yard, which is also a bit of a disaster at our house. I prefer gardening, so I will focus on just the garden. I usually put seeds in early May. Its early June—-but there is still time and a lot of AT that can help.

I plan what I grow based on what my family likes to eat, how much space I have, and potential cost savings. For example, we eat a lot of carrots and onions but I find them harder to grow and relatively cheap at the store, so I don’t grow them myself. I do grow herbs, kale, fancy greens/salad greens, and heirloom cherry tomatoes. This year I’m also growing sunflowers—more for the beauty and the birds than for cost savings.

a 6 inch tall raised bed with 5-6 tomato plants in cages and some weedy looking chard and small kale seedlings surrounded by a chicken wire fence. Some hedge roses are in the background
One of my raised beds with volunteer kale and chard and tomato seedlings planted this year. I make my own compost and as you can see, there are lots of egg shells in it this year. I heard the calcium is good for tomatoes.

I grow my plants in raised beds or containers right next to our driveway—seeing them when I come and go reminds me to water them. Raised beds and containers provide a variety of benefits:

  • If your soil is poor, it provides a method for adding good soil
  • It allows for people with physical disabilities to more easily access the beds—they can be raised to counter height if need be
  • It allows for better drainage

My raised beds are not very raised and are starting to decompose so I think this is the last year for them. I have chronic upper back pain and, since giving birth, have also struggled with low back pain so new, higher raised beds are in the plans for next year.

a half a dozen waist high raised beds overflowing with vegetables and flowers
The Ann Arbor CIL hosted a community garden for years. Their raised beds are gorgeous–you can sit on the edges to work them or lean over just a bit. They are my nirvana raised beds.
two women, one using a wheelchair, work on a strawbale bed with tomato cages sticking out of the top
My cheapest option for higher raised beds next year are strawbale beds.
A man using a wheelchair with a raised bed that he can pull his wheelchair under--a tabletop raised bed
Ann Arbor CIL also had some tabletop raised beds that you can pull a wheelchair up to and under. Glen Ashlock,a former staffer and AT guru is pictured here with the bed.

Raised beds and container gardening don’t have to be costly either. A cheap, large pot or 5-gallon bucket on some pavers or bricks make wonderful, small raised beds that would be great for greens or potatoes or even small tomatoes. Straw bale gardens  are cheap, easy ways to create a raised bed and use the decomposing straw to feed your plants. There is a great Facebook group called the Container Gardening Alliance that provides lots of tips and tricks for container gardening.

over the door canvas shoe caddies are filled with dirt and plants are growing out of each shoe caddy opening
An ingenious example of an inexpensive, space-saving, accessible container garden.

Adapted garden tools and watering systems also increase access to gardening. Hand tools can be built up with bicycle grip tape or pipe insulation. Handles can be lengthened or shortened as needed to give people the reach they need. Drip systems or sprinklers attached to platforms with hoses run to them that do not obstruct pathways prevent the need for carrying heavy watering cans.

handheld tools with built up grips and ergonomic handles

You don’t need a yard to have fresh herbs, flowers, and vegetables. A sunny window and some pots are all you need—and the plants will brighten your day and clean your air for you.

There are so many ways to make gardening accessible. What tips and tricks do you use? What are you growing this year?

Be sure to check out our accessible gardening webinar that covers all aspects of accessible gardening: tools, pathways, beds, and container gardening. Go green thumbs!

Let Me Take You for a Ride!

By Aimee Sterk, LMSW, MATP Staff

I went back to work after an extended maternity leave in early April, and soon after, my back problems flared up. After trying PT with no success, I set an appointment with my chiropractor who quickly deduced that my new behavior was long drives–not having a child. I was fine picking up my son and carrying him throughout my leave. It was not until I combined it with the driving associated with my job that the pain kicked in.

A close up of Thelma and Louise along with a shot of them in their convertible driving off into the sunset
Every time I get thinking about driving I think about the movie “Thelma & Louise” and my best friend Cristine–the Louise to my Thelma or vice versa. What a pair! I’m not up for that ending though.

With my chiropractors help, I figured out that the way I was sitting in my car was a problem–hips askew, slouchy, one leg at a bad angle with no support… not a great way to sit for the almost 2-hour commute, especially when you add the tension I hold in my body when dealing with the stress of driving–all those other drivers out there that weave, tailgate, aren’t paying attention.

So, back to some mindful driving for me with awareness of how I’m holding my body, regular stretching at home, and doing some stretching that is safe while driving. I also am implementing some stress relief while driving which for me includes use of my smartphone for funny podcasts, good music, and anti-stress music. In case you haven’t already heard, there are actual songs proven to reduce anxiety so I listen to Marconi Union’s Weightless when I need to.  I’ve even used it to calm my colicky baby with some success. At the very least, it calms me so I can help him when he’s screaming. Another option would be the Lotus Bud (ios) app which sounds a chime randomly throughout the day to remind you to check in for a mindful moment–how is your body feeling? What are you thinking about? Where are you? Another mindful app that is useful that can also do check-ins is Mindfulness Daily (ios). Sometimes I find these mindful apps helpful and other times they annoy me. Its worth giving them a try to see if they are useful to you.

Since I’m talking AT for driving, I’d like to share some other resources and AT for driving:

  • Michele Seybert did a great, extensive webinar for us on vehicle modifications.
  • A woman getting out of her minivan pressing up with the handybar stuck into the doorjamb to aid in pushing to standingThe Handybar is a device which is a sturdy handle with a downward pointing beak that extends about 4 inches. It fits snuggly into the U shaped metal piece in the car
    door frame that the lock engages with. When the door is opened, the device wedges into this closed U shape metal piece, providing a stable, strong handle from which to push yourself to a standing position.
  • a black pancake-shaped cushion sits on a car bucket seatI frequently demonstrate the swivel seat which is a round, gel-filled cushion on a lazy susan bearing that helps people swing their feet in and out of the car (sometimes a plastic grocery bag can do the trick for this too).
  • At a recent presentation, a woman said she keeps long kitchen tongs in her car so she can reach things on the other side of the car or things she has dropped.
  • I use a Bucky every day to help support my lower back which helps my chronic upper back pain. It is a buckwheat filled lumbar pillow.
  • One of our demonstrations sites, Disability Network West Michigan, in Muskegon, recently worked with a person that needed an extended seat belt so she could fit her seatbelt around her body safely. The AT person at Disability Network, was told that extended seatbelts are illegal. They did some checking with the local police and this is not the case. She also learned that you don’t have to purchase the extenders made by the car manufacturer. There are other options online that are much more affordable.
  • My car, a Toyota RAV4 has Bluetooth capacity to let me use my phone hands-free. This will help my upper back pain as well as provide better safety while driving. It also is easier to get into and out of than my old car, a Honda Civic.
  • a close up of a woman's hand holding a handle. The end of the handle has a nut and bolt that runs through a set of keys.Several years ago, my friend Carolyn shared with me that some vehicle manufacturers were selling people expensive key turning aids. People with hand strength disabilities, especially arthritis, have a hard time with the pinching and turning motion required to turn on some cars (some now turn on with a button). There are far more affordable alternatives to the vehicle manufacturer devices called key turners. They give a bigger handle to grip and provide leverage.

What devices help you to drive or ride in a car? What works well for you? What has not worked?

Try it Before You Buy It–Short Term Loans

By Aimee Sterk, LMSW, MATP Program Staff

Michigan’s Assistive Technology Program has a short term loan program. This program allows you to borrow equipment, free of charge, from our inventory, after you participate in a demonstration of the device(s).

Device loans are useful if you are considering a purchase and want to “test drive” a particular product, especially devices that are more complicated or devices that you will use in multiple settings. This way, you can see if the device works for you in the places you would use it.

Our short term device loan program is not intended as a loan closet, not a loaner while your equipment is out for repair, nor to meet the need for a device for a temporary disability. However, there is a network of multiple loan closets throughout the State of Michigan who do provide this type of loan.

Currently short term loans are available in the Upper Peninsula, the Lansing Area, and Oakland and Macomb Counties. Reports from people who have used short term loans are 100% positive. Everyone surveyed who has participated in a short term device loan has been highly satisfied or satisfied. Vision devices have been most popular but devices for hearing, computer access, and cognition have also been well-received. These included magnifiers, big button telephones, reminder clocks, Livescribe pens, adapted keyboards and mice, and TV amplifiers.

People have also tried out devices they might use in transitioning out of the nursing home, back to the community.

If you would like to borrow a device for a short period of time to see if it might work for you in your day-to-day life, contact:

Kellie Blackwell, Disability Network Capital Area (Lansing) 877-652-0403

Carolyn Boyle, Superior Alliance for Independent Living (Marquette) 800-379-7245

Traci Comer or Jenell Williams, Disability Network Oakland Macomb (Southfield) 248-359-8960

Sharon Lotoczky, Macomb Library for the Blind/Low Vision (Clinton Twp) 855-203-5274

Top 5 AT Items for Dressing

By Aimee Sterk, LMSW, MATP Staff

While I have chronic back pain and other hidden disabilities, I didn’t have a need for AT for dressing until I was very pregnant. Now, I have a new appreciation for it! I’m interested to hear what others use for dressing, but in the meantime, I’ve compiled this list from my personal experience and my work advocating for supports for community living.

  • Elastic Shoelaces or slip on shoes plus long handled shoehorn: Elastic shoelaces have been a revelation to some people I’ve met—they turn tied shoes into slip on shoes. Easily and cheaply obtained, they are a great piece of AT. Pair them with a long handled shoehorn, and getting shoes on in the morning just gets easier.
  • Dressing Stick: Dressing sticks tend to be 18-24 inches long with one side with a “c” hook on it for pulling zippers and shoelaces and the other end has a puller/pusher hook on it for putting on shirts and pants/skirts or pushing down skirts/pants and socks. It is especially helpful when you have use of one arm or have limited arm movement or trouble reaching or bending.
  • Sock Aid: Another item beneficial when reaching or bending is a barrier—I used my sock aid often in my third trimester. The one I used has a terry cloth side to help grip the sock and hold it in place until you get it on your foot. I’ve seen videos featuring the Sock Slider on Facebook and it, too looks promising—like the sock aid I used but no need to pull on handles, it sits on the floor with the sock opened by a plastic tube for you to slip your foot through and into your sock.
  • Doff N Donner: A lot of people have shared with me the need for something to help them get compression stockings on. The Doff N Donner is a newer product designed to help with this taxing task. Shaped like a very large, ribbed, rubber cuff for a sweatshirt, this product can be used with an accessory called a cone (the cone really just looks like a mini Washington Monument to me with a suction cup base) to load the stocking on the cuff. You can also use a baseball bat or your arm to load the stocking on the cuff. According to the manufacturers website, people can use the Doff N’ Donner themselves or with the help of an assistant. It can be used with a sock aid to reach your foot with practice as well.

It’s hard to describe the action needed to make the Doff N’ Donner work but there are great videos on the manufacturer website and a couple on YouTube. There is even one showing how the Doff N’ Donner can be used to put stockings over bandages.

We have these devices available to try through our AT demonstration kits throughout the state so you can see and try them and decide if they work for you. Our website lists locations for these kits.

  • Adaptable Clothing: So… in looking for resources for adaptive clothing, all of the websites I came across were pretty ableist and most were geared toward older adults with all the models on the website being older white men and women. Many used outdated language like “handicapped” and some just looked like medical gowns and hospital gear. If you have some more inclusive adaptive clothing resources to share, please do! Adaptive clothing includes items like shirts with back snaps so that you don’t have to raise your arms to put them on or put them over your head and ponchos that cover wheelchairs for warmth instead of the hassle of a coat. It also includes easy on and off items, and even shoes that are adaptable for swelling. In my own life, I’ve found that more universally designed clothes helped a lot. I had swelling and back pain—and a growing stomach—during pregnancy so found the tall and curvy leggings from Lularoe and yoga pants with a fold down waist from Target were easy to get on and worked really well. I could not get maternity pants to stay up. Tunic tops were also a necessity with changes in my body size. I found a pair mesh clogs that kept my swelling feet cooler and were not tight to begin with. I also wore a lot of dresses that were breathable cotton and had ruching on the sides that allowed for expansion.

What devices or clothing hacks have you devised to help with dressing?