Last year our message was simple— “We need Congress to introduce and pass legislation to create a Separate Benefit Category for Complex Rehab Technology (CRT) within the Medicare program.” This is the only way that people with disabilities will continue to receive the Complex Rehab Technology products and services they need to assure their health and function.

This year (2012) CELA was different, the story had changed. Legislation was introduced by Congressman Joseph Crowley (NY- 07) on April 18, 2012 ,  HR-4378, titled; “Ensuring Access to Quality Complex Rehabilitation Technology Act of 2012”  This year we went to our members of Congress asking for co sponsorship or a Senate companion Bill to HR-4378.

To read about HR-4378 and to find out what you can do to help move this bill into reality I’ve included a link to the NCART website.

Please take time to read and become involved in HR-4378. It will take a few moments out of your day, but it could have lasting positive impact on the CRT industry and more importantly the consumers we serve. Thank you!

Stay informed by reading these related blog posts:
Fueled by Advocacy – CELA 2011
Take Action to Change Flawed Competitive Bidding Program
Inspiration of the Hill – CELA 2010

The last trip Mark and I took together was almost exactly a year ago and it was to attend the same meeting. Short story long, we did not make it to the conference last year. The power blew in the terminal we were supposed to fly out of and they rescheduled us to fly the next day. We called a couple of the sales reps already at the meeting and asked them to set up the booth for the next day. We got on the plane the next morning but ended up getting delayed and once we got to Memphis to connect to Nashville we missed our flight and would have missed the show if we got on the next flight. We decided it was better to fly back to Minnesota and called the same reps that set up our booth and begged them to man our booth. The barbeque was great at the Memphis airport so not all was lost.

This year was different, but not in a good way. I was sitting on the plane day dreaming and waiting for takeoff when Mark said to me “did you hear that?” I said to him “hear what?” Apparently the Captain came over the intercom and said there would be a delay due to the belly door being damage by a wheelchair and it needed to be fixed before takeoff. The odds of it being my chair were high because I was the only one with their own wheelchair that boarded the plane. This was not good because the likelihood of the chair not being damaged was slim. I had a similar incidence on a flight from Sydney to Singapore a few years ago and the chair lost that battle too.

The landing was picture perfect and there was no mentioned from the Delta flight crew nor the airport staff that helped me off the plane about a damaged wheelchair. They got me into the jetway and I attempted to position my chair to transfer into it and knew instantly that it was not right. It wobbled like it was ready to collapse. Upon further inspection we could tell at minimum that the one wheel was pretty much destroyed. Now what? They had to get me out of the jetway because the next crew was waiting to board. They found an airport chair for me to sit in. Once we got into the terminal I knew I had to act fast. I had a weekend of work ahead and needed something other than what I was sitting in. As soon as we got into the terminal I called our Arizona EasyStand rep and explained my predicament, it just so happened that he left his house two minutes ago and said he would turn around and bring a demo chair that would fit. What a unlucky and lucky day. He would meet us at the hotel and I could jump into the chair there.

We had to go to baggage and fill out paperwork to try to figure out what needs to be done about the chair. They talked about trying to fix it before I left Arizona but that was not going to happen. We went around and around about how, when, why and where it would get repaired and finally decided that the chair should be sent back to Minnesota to be fixed. Spending a weekend in a new wheelchair is like going to the Minnesota State fair in new shoes. It was not easy to get use to. Rick and Doug at Ki Mobility did a terrific job adjusting the chair and made it workable. I sent it back the following day after I returned home and started using a back up chair that I had.

The end of the story has not come yet. They said they were going send the chair to Minnesota to get repaired but failed to mention that I was to stop by the Delta service desk in Minneapolis and fill out some more paperwork. I told them I live two hours away so we would have to do it over the phone. We did and they sent it to some company called Scooter Round who then subcontracted the work to some other company. I get a lot of phone calls from Delta and the other companies but not a firm date of when the chair will be repaired. Not sure when I will see my chair.

I can only wonder what someone would have done that did not have connections to the industry. They offered me a chair in Arizona that would probably have required me to be pushed by someone else over any distances. It has been 10 days since my chair was wrecked. How long does Delta think is reasonable to go without your wheelchair? I will let you know the rest of the story when it happens.

Wheelchair Travel Resources:
“Life After SCI” Wheelchair Travel Tips Video
Traveling – An Adventure Worth Taking
What I learned From My Summer Road Trip

Have you experienced any similar challenges when traveling with your wheelchair? Or do you avoid traveling by airplane for this very reason?

Old people simply don’t have enough energy to get on my nerves (usually).  And plus – they’re calmer, less messy and they have a lot of cool stories.  But that all changed five years ago when my first niece was born.

It feels weird to say this, but I think I actually like kids now.  I used to think kids were too in your face and questioning, but now after spending the last five years with my three amazing nieces, I actually like those qualities about kids.  Who am I?

One of the things that frustrates me most in this life is when the things that need to be said, aren’t.  But I have found from hanging with my brother’s offspring that kids have no problem whatsoever saying those things (and I really mean none whatsoever).

Life is just too short to beat around the bush and kids will get straight to the point, especially when it comes to asking you questions about your disability.  I remember the first time my little niece saw me out of my wheelchair on the couch; she did a double take and had no idea what to make of the situation.  For all she knew, the wheelchair was fused to my body, so when she saw me out of it she had no idea what to think and voiced exactly what she thought the instant she thought it, “How did Auntie Tiffy do that?”

Or my nieces have no problem reminding me (and their friends) how exactly I go to the bathroom. Ever since I broke my neck, I always thought it’s better to be completely open about things, and now I see that kids have got this skill down pat.

Despite my later-in-life realization that kids can actually be great little firecrackers when it comes to life with a disability, I’m still not quite ready to have kids myself.  I love my nieces to death, and plan on being the extra cool aunt who makes being in a wheelchair “the coolest thing ever” for a little while longer.

Check out these related posts by some of my follow bloggers:
Explaining Spinal Cord Injury to Kids
Learning about People with Disabilities through Today’s Children

Are you an “old people person” or a “kid person?” Why?

Photo courtesy of John Nakamura Remy

We were well on our way and everything seemed to be going perfect when an announcement came over the plane’s intercom. “There will be a short delay because the luggage door hit a wheelchair.” I looked around and noticed that my buddy Schmitt was the only one who used a chair. “That can’t be good” I said. After landing in Phoenix they rolled up what was left of his wheelchair. Synergy spokes, half gone, left axle, bent, left rim, damaged.

Luckily, one quick call to our local EasyStand Rep Chris Davis, and a back up chair was delivered to our hotel. Sweet! Finally it was time to relax a bit before the show started the next day. The hotel we were staying at, the Double Tree Paradise, had the most incredible cactus landscaping I have ever seen. That night at Sapporo’s Restaurant, I enjoyed the best sushi around. Thanks, Tom B. from The ROHO Group!

The big show day had arrived and I approached it with enthusiasm. I personally love the NSM show because the suppliers that attend are pumped up to learn! They all were amazed by the new EasyStand Bantam Medium and how it could go from supine to sit-to-stand with such little effort. “It can support someone up to 200lbs,” I would say. “I know someone right now that could use this,” was usually the reply. All of our EasyStand suppliers are the cream of the crop if you ask me!

By the end of the day, I had a sore throat from talking and Mark Schmitt was there working with me the whole time. It was a terrific day! That night I caught up with the “Nate Williams” band and they were fantastic. Everyone in the bar loved him and when they found out that I taught him guitar when he was thirteen, I sort of felt like a celeb.

Here’s to a great weekend and another successful tradeshow! I can’t wait to see what next year will bring.

What do you feel are the biggest advantages to attending industry related tradeshows? Name a few that you attend every year.

Whether you’re talking about John Hockenberry, the esteemed journalist paralyzed who’s worked for NBC, Marilyn Hamilton the founder of Quickie wheelchairs, or Aaron Fotheringham, the extreme sport enthusiast who landed the world’s first back flip in a wheelchair, there are dozens of amazing people with disabilities to look up to when you yourself have a disability.

Of course there are so many unknown amazing people with disabilities living across the USA that aren’t nationally known, and these people are just as fearless and inspire people they interact with everyday. Maybe its some little girl in a wheelchair who sees them wheel by each day, or an able-bodied teenager that admires them from afar. Either way, people with disabilities are out there living their lives; and in being true to their soul’s desires and not relenting, they’ve become inspirational people (sometimes whether they like it or not).

I don’t know about you, but it was really weird the first time someone was “inspired” by me because I was out in public. That I don’t really like. But I do like it when someone with a disability contacts me, or comes up to me, and tells me I’ve been able to help them in some way.

It’s been great all these years, helping newly injured women find themselves again. And sometimes I’d get these really funny messages from my site that would go like this: “Hey you’re really pretty…and you’re out there dating people. You’re an inspiration.” Sweet, I’ve become an inspiration for being stubborn and refusing to let my disability stop me from dating (no one ever told me growing up that being stubborn would be such a great personality trait).

When it comes down to being an inspiration, it can be a sensitive thing in the disability world. Some people don’t mind it, for others…just hearing the word ascribed to them makes them cringe. Either way, being called an inspiration when you have a disability can’t be helped. It’s a package deal and comes with the title. Best to embrace, and not waste, such a special opportunity.

How do you feel about being an inspiration?

Photo Credit Richard Drdul

We talk about Jenni’s injury, her work as a motivational speaker, and possibly the most fun part of the show – her new 8 month relationship with another quadriplegic, Blake, who she met years ago after attending his benefit (after his injury). Tune in and hear some powerful, powerful stuff.

I also talk about adaptive yoga teacher training weekend, which I just blogged about here.

Links!
- The Site That Breathes (Jenni’s personal blog)
- Read Jenni’s posts on the EasyStand Blog

Use the player below to hear the show (37 minute run time). No Free Rides is sponsored by EasyStand. (view show archive)

Podcast 85_Jenni Taylor

The one thing that stuck in my mind from the first meeting was that Girvan talked about this project he was starting in Guatemala and he shared his excitement, enthusiasm and I dare say his apprehension. He was worried that it may not end up being anything. Boy was he wrong! Over the years he kept me informed of the progress and the humility he felt serving others. Please take time to read the story and enjoy it as much as I have. Below is the March 2012 report written by Girvan MacCorkell of Moorings Mediquip who is also an EasyStand Distributor.

The song says “What a difference a day makes” – sometimes it takes much more than a day to see real change or to recognize them. I first visited Santa Maria de Jesus in early 2001, now eleven years have passed and I can really see a difference. Let me give you a couple of examples.

Blanky – In February 2001 – Blanky was sitting on the floor at everyone’s feet when I first met her; she had been carried into school and had no way of getting around. I was able to provide her with her first wheelchair – that was a special day! In March 2012 – Blanky went through school, graduated and completed a bookkeeping course in Guatemala City. She has come back to the school to be appointed as the school secretary! She really looks the part and is doing a tremendous job.

The School – In February 2001 there were eight students meeting in a small single story building that was not really suitable as a school. Today there is a three storey purpose built building and almost 100 pupils of varying needs and levels of disability. The building and the school have become a symbol of hope in a very needy ‘village’ of some 25,000 people.

We have been privileged to be a part of what has been happening – our first real project was when a request came in to help finish the third floor of the new school. We were excited to be able to provide the $15,000 needed to do the job.

Our next big project was when we were able, with the help of a number of others, to fund an Occupational Therapist, Maria Larkin, to go from Ireland to work at the school for a year – she did a wonderful job and is still talked about with affection!

The New Life with Education school continues to provide daily for the needs of the vulnerable children of Santa Maria de Jesus – food for their bodies with a good meal each day, food for their minds with an excellent standard of education and food for their souls with guidance and direction in spiritual matters.

Our involvement continues – The 2012 Sensory Room Project is well under way. I spent five days in early March in Guatemala and am able to report the following:

1. Equipment for the sensory room has now all arrived in Santa Maria de Jesus. I had taken some with me on my last visit in August and the rest was shipped direct from our supplier in The Netherlands. I spent almost two days of my visit working on getting the shipment through customs – thankfully after a lot of talking at numerous offices we have managed to get everything through safely and intact! No small feat in a country where the amount of duty might be determined by how the official is feeling on the day and the possibility of theft is high! The cost of this equipment including shipping and duties etc was in the region of £7500.00.

2. I also spent time with the carpenter who will be doing most of the installation work. It was good to be able to explain our plans for the room with the help of Amy as interpreter and my pigeon Spanish! We have agreed a cost of approximately £2000.00 which will cover all his work and the materials involved.

3. Work is expected to start by the end of April so we are looking forward to some exciting photographs some time after that.. This does not finish our project – I have promised to prepare teaching materials on the use of the room which Amy will translate. The plan is to employ a suitable person to run the room after training. I have not as yet committed us to funding this person but would dearly like to at least be able to underwrite her cost for a year or so if we manage to get some further help from outside sources.

4. As you can see from the figures above, the total cost of the sensory room is in the region of £10000.00 – we are delighted with this figure as it will give them a room and equipment that would be costing at least £20000.00 here at home!

5. As you know Moorings has underwritten this project but we are most encouraged to have had donations from a variety of sources which has helped enormously. With what Moorings has in hand and what we have pledged over the next few weeks, I estimate that if we managed to get further gifts of say £4000 that would also allow us to fund the person to run the room!

6. As usual when I visit Guatemala I see more work to be done and this time was no exception – there were at least two, but more likely five, children either in the school or associated with it that were obvious candidates for using the new Buddy Roamer™ walker that Moorings Mediquip is now manufacturing so I am working towards making this happen also!

We have a number of component parts that were used for demonstration or were in some slight way not usable in units that we were selling and I have pulled those together and have already spoken to one of our parts suppliers who has agreed to add, free of charge, to our next order enough of the ‘bits’ that they make for five units.

I am in the process of speaking to some more suppliers to beg for the rest of the parts and our aim is to be able to build and then ship some Buddy Roamer™ units to the US where they will be loaded into a container that will make its way to Guatemala. We are looking forward to a day not too far distant when we can have photos on the Buddy Roamer™ website showing some kids using walkers in the streets of Santa Maria!

Conclusion – Firstly, thanks to those of you who have in one way or another partnered with us and with the New Life with Education School. It has been a very worthwhile investment! Secondly, if you have considered getting involved before but up until now have not, think again.. you could help make a difference! As I said it doesn’t all happen in a day but it does happen!

Did you enjoy this story? Have you been involved in any similar successful projects?

Photos Courtesy of Girvan MacCorkell

When it comes to doing things that I can handle – like shopping – I strongly prefer to do them on my own. That is a common theme with anyone who has a disability: when there are so many things about your lifestyle that you have no control over you cling to the autonomy over what you can. In fact, I can be so independent at times that I’ve gone to two separate stores to shop for something because I couldn’t reach it in one store and didn’t want to ask anyone for help.

But that isn’t to say that I am against the occasional helping hand from others when I’m out and about. My take on that is that if someone gladly offers to grab a door for me or pick up something that I dropped I’m all for it and appreciate the gesture. The only time I get bothered by people not helping in that regard is if they see that I’ve dropped something, look me in the eye, and then keep walking. Or if they half-heartedly open a door for me by walking through it first and then give it a little toss open behind them instead of holding it so it either closes just as I’m about to go through it or it bangs hard against my wheelchair.

A lot of that is a function of many people just not knowing when or how to offer help to people with disabilities. Some people with disabilities are so fiercely independent that they get mad whenever someone offers to help and it spoils the pot for the rest of us. For example, there is a guy who lives in my apartment building who seems perpetually angry about his SCI. He kind of corners me about once a year to tell me that the thing that bothers him the most about having a disability is when people look at him like he can’t do anything for himself even though he still can. As such, I once witnessed him yell at a girl trying to be helpful by holding the elevator door open for him, saying things like “Stop that! I’m not getting off here! You’re not helping!” People like him make people like her doubt whether she should offer to help in a similar situation in the future. That’s why I was glad to be right there to say “Don’t sweat that, he hates everybody.”

Other than the two examples I gave above, the only time I get pushed to the point of true frustration when people offer to help is when they ask, I politely decline, but they keep pushing. That happened to me at a grocery store last year. An older employee approached me and asked if I needed help shopping for anything. I politely said no thanks. Then she followed up with “Are you sure?” I said yes I was sure and that I had it covered. Then she followed that up with “That’s what we’re here for, we’re happy to help…” I said no thanks for the third consecutive time. Then she said that if I decided I needed anything to just ask and lingered a bit before finally leaving me alone again.

I find that to be the most aggravating aspect of people asking to help me. That is, when people ask if I need help, I say no thanks, but then they just stand there and linger, watching me to make sure that I can do it on my own. That happened to me about a month ago when I was at Target buying supplies to make chili. I was reaching for a can and as I placed it in the shopping basket in my lap a lady sidled up beside me and asked if I needed help. I said “No thanks, I’m good.” Then she asked if I was sure and I said yes. Then she just stood there stunned and stared at me waiting for me to change my mind for an uncomfortable amount of time. When she finally walked away I thought that was it, but then I noticed her standing few feet behind me at the end of the shopping aisle and she just lingered there like she was watching for any sign of distress so she could swoop in. I needed to reach up for another can, which I sometimes fumble with my fingers before I get the proper grip, and I didn’t want her to see me “struggle” so I sat there and pretended to read the label on the can I was holding until she finally just went away. The whole thing was weird and kind of ridiculous.

I would venture to say that almost everyone with a disability has been pushed to a similar point of annoyance over people too nosey about their disability, people that are overly friendly because of their disability, or people that stare because of their disability. In this case the offer to help is often appreciated, but what pushy people and lingerers all need to realize is that I, like them, usually just want to be left alone so that I can to go about the business of doing the routine things in my life as normally as possible.

Do you mind people who offer to help? Have you had similar annoying situations with pushy people?

Photo source: marc falardeau

It was in college when I took on this mentality. There was no one there to track what I was eating and I could get away with anything. Frozen meals, Hot Pockets, pizza, instant mashed potatoes and some frozen veggies with cheese to think I was eating healthy. My PCA would even call me the “Little Debbie Queen.” So what if I loved those sweet dainty cakes full of deliciousness (and always had several boxes always on hand)? And I was one of those lucky people that never had to worry about putting on weight. Food made me happy and I ate whatever I wanted.

Finally, not too long ago, I realized I was pretty lame. I mean, my eating habits were so….blah, and I felt my injury was to blame. Why wasn’t I enjoying my palette more? That was still the same despite my injury, right? So one day, while looking at my sad cheeseburger from McDonald’s with no pickles, feeling the gurgle in my stomach again as I ate it, I decided it was time to cross over to the dark side.

And slowly, grudgingly “real” food started to make its way into my diet. I started cooking for myself every once in awhile, but still not very much. It wasn’t until just a few months ago that I decided to eat healthy 90% of the time as an experiment. A mysterious reoccurring pain in my bladder that wouldn’t go away forced my hand. I was desperate.

So I began to eat “super foods” nearly every other day (avocado, nuts, salmon, greens, sweet potatoes), smoothies every morning (pineapple and ginger will blow your mind), worked in fresh produce at every meal, minimal yet healthy carbs (brown rice, small amount of bread), more iron in my diet (beets), lots of vinaigrettes and other acids, healthy proteins like hard-boiled eggs to start out the day and eating several times a day; not three huge meals.

The results so far? Astounding. Vanity-wise, my dark bags are gone and my skin is creamier. The old acne marks from my teens on my face…yeah they‘re gone. And overall health-wise, I feel like jumping up and down all the time now that’s how much energy I have. I’m also happier and feel just overall better. And the bladder pain is gone too, which I believe the increased proteins and vitamins healed. Dang, why hadn’t I tried this sooner?

There’s a lot of things you can’t control anymore when you’re paralyzed, but it’s nice to know that there are still some things left in our bodies that we can change, can make better, and I’m here to say eating healthy is one of them. The funny thing is, I’m starting to crave healthy food now. Who am I turning into?? Dr. Weil?!

What are your eating habits? Have anything amazingly healthy that you love that always tastes great?

Photo courtesy of EraPhernalia Vintage

Earlier the same day I was chatting with an orthotist who had commented on physical therapists’ tendency to polarize toward either minimal or maximal orthotic support. The minimalists are interested in providing just enough support at the most troublesome joint, hoping the child will develop the strength to work toward desirable alignment. The maximalists are interested in providing greater initial support at more joints so that motor learning occurs in the desired alignment.

I know there is not always one correct answer, but when it comes to providing custom orthotics and the associated cost, I certainly hope the people making the choices are as close to correct as they can possibly be.

Orthotics are frequently used to help children with high muscle tone, weakness, loose ligaments, or misalignment of their bodies. However, there seems to be occasional disagreement among therapists regarding which type of orthotic is best in a given situation. Why is this?

Lack of Experience – As with most careers, physical therapy certainly has a learning curve. Maybe I didn’t always make the most appropriate choices. The dorsal wrap that held the child’s foot in beautiful alignment also made it nearly impossible to put the AFO on without two hands to hold the brace open and one hand to guide the foot in. So, since most of us don’t have a third hand, it was not the most practical option.

A Great Experience – If a certain orthotic yielded miraculous results a time or two, it may become a go-to item to attempt to achieve the same result for others.

Aesthetics – Buy-in from caregivers and orthotic users is key to successful intervention. Sometimes we may opt for something that is perceived as less invasive or something that is less visible, particularly when introducing an orthotic for the first time or when working with someone like an image-conscious teen.

Those are valuable things to take into account. However, the most valuable things to take into account are:

What is the problem we are trying to correct?
How is the individual’s function being affected?
What is the prognosis with regard to the underlying disorder and with the intended orthotic intervention?
What is the role of the orthotic and what is the goal of orthotic use?

Notes from the literature:
A study of 11 children with spastic diplegia measured time-distance, kinematic, and kinetic data with child wearing fixed AFOs, SMOs, and no braces. While stride length and walking speed were similar with both kinds of orthotic, AFOs increased biomechanical efficiency while SMOs had little measurable effect.
25 children with developmental delay with hypotonia and flatfoot dysfunction were placed in one of two intervention groups: gross motor therapy alone, and gross motor therapy with soft insert orthoses. The medial longitudinal arch was measured using the arch index pre- and post-intervention, as were gait parameters. While gait parameters did not vary significantly between the groups after intervention, both approached age-appropriate norms. Arch index improved significantly in the group with the orthosis, potentially decreasing the chance of long-term complications.

Where do you stand when it comes to making orthotic recommendations?

References:
Carroll, Norris. “The Orthotic Management of the Spina Bifida Child.” Clinical Orthopaedics & Related Research. July/August 1974. Volume 102: p.108-114

Carlson, Warren E. MS; Vaughan, Christopher L. PhD2; Damiano, Diane L. PhD; Abel, Mark F. MD. “Orthotic Management of Gait in Spastic Diplegia.” American Journal of Physical Medicine & Rehabilitation: May/June 1997. Volume 76 – Issue 3: p. 219-225

Ross, Charmayne G. PT, DSc; Shore, Susan PT, PhD. “The Effect of Gross Motor Therapy and Orthotic Intervention in Children With Hypotonia and Flexible Flatfeet.” Journal of Prosthetics & Orthotics. July 2011. Volume 23 – Issue 3: p. 149-154

Additional Research and Articles

Related Posts:
Brace Yourself: The Role of Orthotics in Standing Programs
What’s the difference? Clinic-Based Versus School-Based Physical Therapy and Occupational Therapy
Communication and the Therapy Situation

And to say these past 19 years of being paralyzed have been tricky when it comes to falling asleep would be the second biggest generalizations I’ve written. I struggle every night with finding sleep. Whether it’s back pain, out-of-control spasms or every piece of skin I can still feel driving me batty, sleep can be the elusive fairy to many people with disabilities.

When I was in rehab, I remember meeting the guy in the room next to me, Sam, who was a high school football player and suffered a severe head injury from a car accident only a few days after my injury. It was a bad accident, and even though he didn’t have any permanent spinal cord damage like me, he still developed some wacky sleeping habits after his injury. One of the strangest things he’d do was sleep with his covers over his head, just like putting a sheet over a bird cage (to help it fall asleep). And he’d sleep with his door open so everyone walking by could witness his bizarre sleeping style. I saw it one day and was intrigued.

After seeing how Sam slept, I tried his method the following night and much to my surprise, I found he was onto something! See, when you have a spinal cord injury, everywhere on your body that you can still feel (which sadly isn’t a lot for most) is heightened tenfold….one hundred fold even. Basically if wherever you can feel on your body isn’t perfectly comfortable when you’re trying to fall asleep, you’re not going to. But with a blanket over your head, it gives you additional tactile sensation “up-top” that you’re not getting with your legs down below. Simply “feeling” the blanket can knock me out on some groggy nights. I love it.

A blanket however, despite its awesomeness, is not the miracle answer to my sleeping problems. An eye mask, earplugs and perfectly situated pillows are also just as critical to my falling-asleep method each night. Oh the joys of SCI. They’re never-ending.

How do you like to sleep? Have any tricks?

Photo courtesy of rachel CALAMUSA

Since bullying has been going on practically forever, many people will basically say that it is just “part of life” or “a rite of passage,” and that we, as a society are getting way too carried away with our attention to this issue. Unfortunately that has been the stance of many influential figures during the course of history, but times are changing. Just know that each and every person, young or old, is playing a role when it comes to bullying. There are four roles: the bully, the victim, the witness, and the leader. The first three roles are all dealing with a self-esteem issue while the leader has a good, maybe even a great self-esteem and cannot tolerate any type of bullying. The leader is where we all need to aspire to be, including children and adults with disabilities. It begins with getting to know oneself.

Yes, there are many outside factors that affect us, but ultimately how we choose to act or react is really all that is under our control. The Serenity Prayer captures this beautifully. “God (or whomever or whatever you believe in or don’t believe in), grant me the serenity to accept the things I cannot change, the courage to accept the things I can, and the wisdom to know the difference.” Yes, the bully needs to suffer the consequences of his/her actions, but no matter how hard we try, we can’t fully change the bully. The bully has to want to change him/herself, but just know that we can influence this change by changing ourselves.

The bully, the victim, and even the witness are all disconnected from themselves on some level. When we are disconnected from ourselves we can do some terrible things to ourselves and to others. Why? Our greatest need as human beings is our need for acceptance and our greatest fear is our fear of rejection. When we feel, inside ourselves, unacceptable…whether it is how we look into the mirror first thing in the morning or even the words that we use to describe ourselves in our head on a daily basis that are not very empowering, this is when we become disconnected. Someone who is disconnected from oneself and does not know how to reconnect has the potential to become a bully, a victim, and even the most common of the four roles, a witness.

To my friends with disabilities, because of how we may look with our physical disabilities and/or perceived with our mental/hidden disabilities can make us easy prey for a bully. Please re-read that sentence. The most important word in that entire sentence is “can.” It does not say “will,” but it can if that is what you choose. If you choose to see or think of yourself as the victim, and you believe that you “will” be bullied then it WILL happen. Again, the bully must suffer the consequences of his/her actions, absolutely yes, but what if there were ways that it did not even have to come to that for you. What if there were ways for you to not even put yourself in those situations of being bullied? Does that sound relieving, maybe even ideal to you? I hope so because while it can be a challenging path, it is certainly worth taking compared the alternative path that is not a very pleasant one at all.

So, how do you begin to mold yourself into a leader? First, you begin the day by looking into that mirror and seeing all the greatest inside you and outside of you. You take pride of your physical presence, the way you look and the way you act. Now this may be challenging for some of you, but just know it is challenging for people with or without disabilities. I am not saying that you have to love everything about the way you look, what you can or can’t do, or even the thoughts that go through your head on a daily basis. But I want you to make peace with those harsh words that you use to describe yourself, the way you see yourself in that mirror.

Second, always know that people who put you down in any way, even just one word, one laugh, one inappropriate shove physically…are not happy with themselves and are disconnected. This does not make it right, but if you know that they are disconnected from themselves, you will know that it really has nothing to do with you. Still, you are the target practice and you need to reconnect with yourself to avoid being target practice.

Third, surround yourself with other leaders. Bullies lose power when faced with a strong leader and lose even more power when faced with many strong leaders. You know those people that go to your school and are in your life that are leaders, that have a healthy self-esteem. Do whatever it takes to be in their company and try your best to become friends with them. Not only will they help you to face those bullies, but they are the best in challenging you to become the best person you can possibly be! Enjoy the journey!

Have you or your child been bullied? Please share how you dealt with the situation and what methods worked for you.

Photo courtesy of Eddie~S

I was told a major joystick flaw was the only way my insurance would approve a new wheelchair this time around, which would be my fourth wheelchair after getting hurt.  A joystick is one of the most expensive parts on a wheelchair, but the technician was able to fix my joystick after it shut down in the rain (he added a protective rubber “boot“), so I was denied. Being denied was not a good thing.

If you know anything about wheelchairs, a light drizzle shouldn’t make a joystick fritz out in the first place. So for the last two years I’ve been constantly worried that my now seven year old wheelchair would break down at any moment, even keeping a plastic bag in my purse at all times in case it rains (and it’s saved my butt a few times too). But everything changed about three months ago, and I now have no need to complain anymore.

I found out it’s not that you have to wait for your chair to break down before you can get a new one, it’s about who you know, which gosh darn, isn’t that always the case for everything in life? I met a rehab technician at my medical company for a broken shower chair who had a sympathetic soul. She took one look at my tired Invacare TDX MK5 power chair and told me I should get a new one. I told her I thought I couldn’t yet, but she said I was misinformed. Misinformed? All this time? Turns out, if someone qualified simply thinks you need a new chair, that’s enough.

So now thanks to this lady, my great power chair search of 2012 has begun. Finally. I’m looking for a sleek power chair that has both tilt and elevator.

I need suggestions! Have a great power chair and are a C6 quad? Shoot me a message or comment on this post.

Photo courtesy of Marshall Astor

What you will need:
-Acrylic Paint
-Shaving Cream
-Table Top Surface
-Toothpick, Spatula, or Popsicle Stick
-White Paper
-Squeegee or Sponge
-Scissor

Begin by spray shaving cream on the table top surface, at first I used a pan but then switched to just putting it directly on the table. You could also spray the shaving cream right on your child’s standing frame tray!

Then sprinkle a few different colors of acrylic paint on top of the shaving cream and swirl (but not too much) with a toothpick. If your child has trouble holding small objects, try using a popsicle stick or rubber spatula instead. Using these different tools will also make the swirls different sizes.

Next put a piece of paper on top of the paint/shaving cream mixture, tap or pat down lightly, finally lift the paper up. Wait about two minutes to allow the art to dry a bit and then scrape/dab off the excess mixture with a squeegee or sponge, making a smooth surface.

After it is fully dry, have your child cut the paper into different sized egg shapes. It might help to draw the eggs on the back of the paper first and then cut them out. If your child is young or unable to do this, you can always cut the eggs yourself and let them express the different sizes that they would like.  Finally display all the beautiful “Artsy Eggs” that where created!  Happy Easter!

More fun posts:
Modifying Easter Activities for Your Special Needs Child
Shaving Cream Art for Kids

Did your kids enjoy making these eggs? Is there anything that you did differently to accommodate your child’s abilities?

Joe is an amazing guy from West St. Paul, Minnesota. After his injury in August 2010, he returned to the scene of his accident to reclaim it by completing a 105 mile handcycle trek on Glacier National Park’s “50 mile Into the Sun Road.” He also proposed to his girlfriend upon returning, which you just gotta love.

Joe also talks about his new non-profit, Project Life Flight, which has a mission to purchase expensive outdoor adapted equipment for people with disabilities, and he shares how staying on top of his nutrition the first 1 1/2 years after his injury made all the difference.

I also discusses the importance of staying true to your passions after an injury, even when it seems impossible.

Use the player below to hear the show (37 minute run time). No Free Rides (view our entire show archive) is sponsored by EasyStand.

Links!
- Joe Stone’s blog
- Watch a clip of Wings to Wheels
- Joe’s Vimeo channel (with his very helpful how-to stretching video!)

Podcast 84_Joe Stone