“It is sometimes difficult to entirely understand an Individualized Educational Plan (IEP), to weed though the professional rhetoric and jargon in order to see exactly where and how your child fits. Many parents defer to the words and opinions of the teachers and service providers at the table. Others come in with a single-minded objective, and are not open to any deviations. Your voice, your opinions and your wishes matter and should be included on every page of your child’s IEP, and to do so, you must know what information is needed on each page.”

Read more from this post by Charlene Miller on the ChildRC.com Blog. It explains each of the eight pages of an IEP and what information you should contribute.

Do not be afraid to read and question every section of every page if necessary.  As you read through your child’s IEP ask yourself two questions: Does this sound like my child? Does this sound like something my child needs in order to improve in his area of disability?  Your answers will ensure that your voice is heard throughout every page of your child’s IEP.

Parents, Teachers, Therapists~Tell us about your experiences, positive or negative, that you’ve had when developing a child’s IEP.

As Andy journeys across the Eastern US as Regional Sales Manager, he hears many different stories from EasyStand customers. Here is one story about Yvonne and how she uses her EasyStand at work.

Yvonne's sitting posture is not ideal for working.

When Yvonne stands up, she can breathe and talk better.

Yvonne’s smile lights up the South Center Sheltered Workshop. The staff and clients seem to enjoy the work and look like they are having fun doing it. Although everyone is treated the same, many people say that Yvonne is a teachers pet, because she is frequently laughing, joking and smiling.

Yvonne has Cerebral Palsy and uses a wheelchair for mobility.  When she sits in her wheelchair, she has difficulty working and holding her head up, because of the curve in her spine when she is sitting. It’s also hard to hear her talk and more difficult for her to catch a full breath.

But when Yvonne is standing, it’s easier for her to hold her head up, speak and breathe. She stands in an EasyStand Evolv stander with a Swing-Away Front. This makes it easier for staff to help her into the stander, using a standing pivot transfer. Karen Noftsinger, Yvonne’s Physical Therapist, likes the way Yvonne stands more erect and expects she will get straighter as she has more time in the stander. Julia Montgomery, the trainer that works with Yvonne, said that standing frees up her arms and hands to work more efficiently, with better head control to see what she is doing.

Work can improve a person’s self-esteem, as well as standing, so they make a good combination.

What do you think? Do you or someone you know use a stander at work? Do you find it easier to do certain tasks while standing versus sitting? Please leave us your comments below.

Who doesn’t like a good video?!?!

I always enjoy reading blog posts that include a funny, informative or touching video.

Here are my picks for the Top 10 Video Blog Posts on the EasyStand Blog.  Enjoy!

YouTube – The 10 Commandments of Life in a Wheelchair
Inspirational Video about Father & Son Athletes
Shartrina Shares how Husband with ALS uses the EasyStand
Wheechair Back Flip…Now 3 Years Later
Man With Cerebral Palsy Walks PGA Tour
Josh Basile Helps Others with SCI Make the Transition
Fitting Chayton in Bantam Stander
What Makes the MS Achievement Center So Special?
A Wheelchair Doesn’t Slow This Boy Down! Ryan’s Youtube Video
Dreams Do Come True-Scott Chesney’s Inspiring Video

Which of these videos was your favorite?  Is there another video that makes your list of favorites?  Share the link with us!

This is the first of many posts on the EasyStand Blog about special needs parenting by George Passwater. George blogs about being a stay-at-home and Special Needs Dad at Dadwritings.com. You can also find him on Twitter at: @dadwritings.

Does mobility = personal freedom?

For many Special Needs children, the answer is yes.

For a child with physical disabilities, moving around and interacting with others gives them the personal freedom they want.

Children Love Freedom

All children will grow into the “personal freedom” stage of their development. They want to have freedom to move around and do things for themselves. As parents, we need to let our children have that ability – up to a point anyways.

Special Needs children have this same need for freedom. Unfortunately, many don’t have the ability to experience this freedom due to their disabilities. This is where a mobility device would be needed to help your child “run away” from Mommy and Daddy or help them be more social with their siblings.

Mobility Devices

Cayden shows his big brother who the tough one is!

Now let me say this: don’t think of a personal mobility device as a hindrance, but as a way to give your child some personal freedom. Without the help of these types of devices, even the smallest tasks would be overwhelming to them.

With a personal mobility device, your child would experience personal freedom while doing things like: playing with siblings or friends, getting needed items for themselves or helping Mommy and Daddy with everyday tasks.

Here are just a few types of devices that will help your child with mobility while giving them personal freedom:

• Wheelchairs – both manual and battery-powered
• Gait Trainers or Walkers – helps with standing and walking
• Ride on Toys – both pedal and battery-powered are great for playing outside
• Standers – such as the EasyStand Bantam for standing while playing or helping out Mommy and Daddy

The personal mobility device would not only give your child personal freedom, but also help them work on their physical and other abilities.

Your Special Needs child has the same want as any other child: they want to be mobile and experience their own personal freedom. When you give your child the right mobility solution, you give them that freedom.

What mobility devices does your child use? Do you think that mobility gives them a sense of freedom and independence?

Two great articles recently came out in Rehab Management Magazine and Mobility Management Magazine that I want to share.

“The Need to Stand” by Lauren Rosen, PT, MPT, ATP. 
Rehab Management. January, 2010.
Lauren is the Motion Analysis program coordinator for St. Joseph’s Children’s Hospital in Tampa, Florida.  For years, Lauren has been in the forefront of helping to educate her clients and peers about the benefits of standing and how to find the stander to best fit a client’s needs.   “The Need to Stand” article pulls together the research on standing, types of standers, contraindications,  funding and more.

“The ‘Other’ Benefits of Proper Positioning” by Laurie Watanabe.
Mobility Management. March 2010.
Achieving functional posture can impact your client’s life.  Laurie interviews experts from Varilite, Altimate Medical Inc., Otto Bock and more to find out how proper seating posture can effect respiration and digestion, as well as social, emotional, and cognitive growth. The article also provides “action items” to consider during seating and mobility evaluations.

So you need a stander, but you’re not sure where to begin…

Before you start the acquisition process, please stop looking at standers and funding for standers, and start by calling your physician. If you’re followed by a homecare or outpatient Physical or Occupational Therapist, see if they can communicate with your treating physician to determine if it is appropriate for you to stand/weight bear.

This medical precaution must be exercised when using standers of any kind, in order to avoid the risk of injury, such as fractures, postural hypotension or issues with contractures. If you have not been standing for a significant amount of time or this is your first time standing since injury or disease onset, it is necessary to obtain a physician’s approval to assess your standing tolerance. In some cases your physician may request that you have an X- ray or bone density assessment before giving you the okay to stand. Any existing bone loss or osteoporosis might cause fractures if you start standing without an individually designed standing program.

So take the first step to standing, and see your physician.

This is the first in a series of blog posts on obtaining funding for standing frames by Nancy Perlich, Funding Specialist at Altimate Medical Inc.

photo credit: aprilzosia

Patrick at one of the many rides he participated in.

Here at Altimate Medical, we are lucky to have a great team of representatives across the country who are truly passionate about their jobs, and often volunteer their own time to improve the quality of life for those living with disabilities.  Take Patrick Sullivan of Bill Holt & Associates for example.  He is an EasyStand Rep in Texas and is riding his bike some 182 miles in the BP MS 150 Bike Ride from Houston to Austin, Texas on April 17th-18th, 2010.

Patrick set a goal of raising $400 for his ride. He registered for BP MS 150 to fulfill a personal challenge, and to help the National MS Society fund research, advocate for change, and help people with MS and their families lead powerful lives.

The Society organizes 100 rides nationwide. Riders experience 2 days of pain to help those with a lifetime of challenges. The funds they raise fuel research aimed at treating and eventually curing MS; they also provide crucial services for persons living with MS.

Visit Patrick’s Profile Page to learn more about the BP MS 150, why he rides, or to donate to this the great cause.  Awesome work Patrick, we are proud of what you do!

I’m usually a healthy quadriplegic. The kind that never gets sick, never has skin issues, never needs to see a doctor (except for the occasional UTI). I was the “untouchable quad” for 17 years, and I loved every second of it. Well, that all changed January 31st, 2010, when I got Pneumonia (the bacterial kind). It came on the tail end of a cold virus I‘d been battling, and nestled itself in the upper quadrant of my right lung. I was in the hospital for 12 days and almost died. Almost.

Quick action, IV antibiotics, and some crazy coughing techniques are what saved my skinny ass. I’m blessed and so happy to be back home in my once-confining condo. (it’s funny how being in the hospital makes you appreciate things in a new light). And the thing about being sick is that you learn a thing or two (or three). There are lessons abound whenever you experience illness. And since Pneumonia is the #1 cause of death of people with quadriplegia, I feel compelled to share.

Here’s how you can go from “sorta sick” to almost-dead before you know it, and warning signs for you quads out there who like me, are scared to death of the big baddie that is Pneumonia.

Lesson #1 – Watch for purple lips: When my PCA came to get me up when I first got sick and saw me in all my purple lips and purple scalp glory (classic signs of oxygen deprivation), we knew something wasn’t right. At the time, we didn’t know it was oxygen deprivation, but we did know that whatever was happening, it was pretty serious. On top of that, I was experiencing a huge uncomfortableness in my chest and couldn’t get enough air no matter how hard I breathed. These, my friends, are classic signs of Pneumonia.

Lesson #2 – Get to the ER, and fast: If you have a SCI and think you have Pneumonia, you need to go to the hospital in order to beat it. There’s simply no way around it. IV antibiotics are almost always required, and if you need an IV, you have to be hospitalized. So be prepared for a hospital stay (hopefully it won’t be as long as mine).

Upon arriving to the ER, they took my oxygen levels (which were at 80. They should be 90 or higher) and an X-Ray of my chest, which revealed Pneumonia in the upper-right lung. The ER doc said if I had waited another day to come in, the Pneumonia would’ve dropped into my lower lungs and I would’ve likely died. So – no waiting. Get your butt to the hospital as fast as possible if you think you have Pneumonia.

Lesson #3 – Coughing is paramount over everything else: When you get Pneumonia, be prepared to forgo sleep in way of coughing, which you’ll be doing more of than you’ve ever done before in your life. You simply must get that fluid and gunk out of your lungs if you want to beat it (which feels like liquid glue. Not easy to cough up). If you can’t cough on your own very well, also be prepared for multiple visits from a respiratory therapist, the person who’s job is to help you cough. Consider this person your best friend.

My respiratory therapists helped me cough in two separate manners. First, they used this chest pummeling machine that consisted of a chest strap they’d wrap around me. They’d turn on this machine and the chest strap would inflate and pummel my chest as if tiny gnomes were hitting my entire upper body with little fists. It actually works, and usually after a 10 minute session on this machine I had plenty of stuff to cough up. Secondly, they helped me quad cough, a technique in which they place their hands under my diaphragm and push upwards as I cough, helping me get a stronger cough since my chest muscles are paralyzed and I can’t get a strong cough on my own.

And I figured out how to assist myself in coughing by using my knee. I first sit up the bed, then grab my left leg and bend it up towards my chest. I’m pretty flexible so I can get my knee cap up into my chest with little effort. So at this point I cough, but on my cough I pull my knee into my chest at the same time. This technique works SURPRISINGLY well, and was the main reason I survived this whole thing.

While the pummeling machine helped, my knee technique actually got much more fluid out of my lungs. There were some nights in the hospital where I didn’t sleep at all, being that I had so much fluid coming up. And it’s hard to get better when you cough all the time and don’t sleep. My doc ended up prescribing Ambien to help me sleep near the end of my stay.

Lesson #4 – Practice breathing in your chair before you get discharged: I was discharged too early thanks to this mistake, and had to experience a scary three hours home alone of not being able to breathe before I was brought back to the hospital. Breathing in bed is a different beast when compared to breathing in your chair. I really didn’t know this until getting Pneumonia.

When I first got up in my chair after a week of being in bed, I could only get full breaths if I leaned back and found an open area in my lungs. I was too afraid to tell my docs I wasn’t ready to leave, even though in retrospect I felt very much like I was getting hurried out (another topic for another blog). Anyways, it was incredibly hard to get my lungs back to their chair-worthy health. I had to spend four more nights in the hospital with three daily visits from my respiratory therapists to finally get them back to that point (and upon going home, a week of taking it easy and 24/7 PCA care to get my endurance levels back).

Now that I’m home and things are finally back to normal, I can say without question that I feel very much like Jesus, who after three days of being in that cave, and who everyone thought was dead, came back to life. I have never been as sick before as I was with Pneumonia and now with being home, I do feel like a new person, back from the brink.

I got a second chance to continue living my life as a C5-6 quad, and I’ve never been happier about it.