Adaptation versus Innovation

Pediatric Stroke Awareness Blogger Elizabeth Tarney

I was about seventeen when I learned that most people put on their socks with two hands. It probably sounds ludicrous but it’s true: my aunt was visiting and we were about to head out for something so I was getting my socks and shoes on. She looked at me a bit oddly and asked, “How do you do that?” I had no idea what she was talking about and she explained that she meant my socks, which I’d just slipped on like I always did, stretched wide with thumb and forefinger and then guided over my toes. I don’t remember exactly how I answered her but the general gist of my reply was, “What? Doesn’t everyone do it this way?” That story highlights for me one of the differences in the way I (and, if I may be permitted to generalize, at least some other Hemi-Kids as well) see myself versus the way the world sees us. I know I’m preaching to the choir here, as many of you are parents of these kids and you’ve seen first-hand how adept we can be at taking on a physically … [Read more...]

How to Wear a Shirt and an Arm Cast in Cold Weather

arm cast crop sleeve

Maybe your child with hemiplegia has broken his arm, is participating in constraint induced movement therapy, or may be wearing a special cast for stretching or following surgery. Below you'll find one mom's solution to what to wear in cold weather when your child is sporting a full arm cast. Find as many mock layered t shirts as you can on clearance or at thrift stores, then cut off the "mock" long sleeve on the cast side. Thanks for the creative idea, Sarah! … [Read more...]

Adding a Velcro Fastener to Pants – No More Buttons!

Children and adults with hemiplegia or hemiplegic cerebral palsy may have difficulty fastening pants with one hand. Below you'll find an easy method of replacing the button with velcro. The final photo, which we do not have, would show the button sewn on the outside of the jeans, on top of the original button hole. Remove button and sew to outside of pants. Position it where the button would show if pants were buttoned. If jeans have a snap, you may leave snaps in place. Purchase and sew on commercial grade Velcro. You can also sew a button to the outside to cover up the button hole. More Adaptive Clothing Ideas for Children with Hemiplegia or Hemiplegic Cerebral Palsy … [Read more...]

Adapting Zipper Pulls for Children with Hemiplegia

Adapting Zipper Pulls for Children with Hemiplegia The photo shows a handle that has been added to a zipper pull. This photo shows a longer ribbon that has been added to a zipper pull. More Adaptive Clothing Ideas for Children with Hemiplegia or Hemiplegic Cerebral Palsy   … [Read more...]

Elastic Waist Jeans for Kids and Adults with Hemiplegia

Searching for the perfect pair of jeans for your child with hemiplegia? Navigating buttons can be a challenge when using just one hand. Many of our kids eventually learn to button pants, but until then, or if they're in a hurry, the elastic waist pants are a big time saver. Where Can I Find Elastic Waist Jeans? Search for elastic waist or pull on jeans. Target Hanna Anderson Crazy 8 Osh Kosh C. W. D. Kids Gymboree Land's End TheSeniorShop.com - adult sizes Walmart Ready for Buttons? Use a seam ripper to make the button hole a little larger Use a "button assist'" Forget the Buttons! Add a velcro fastener. Remove the button. Stitch up the button hole. Attach a snap or velcro. Altering jeans for individuals with hemiplegia- Add your own elastic to traditional jeans Buy good quality leggings or jeggings More Adaptive Clothing Ideas for Children with Hemiplegia or Hemiplegic Cerebral Palsy … [Read more...]

NDEAM Poster Art competition – Texas Artist with Disability

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The deadline for submissions for the NDEAM Poster Art competition is coming up – March 15. Can you help us get the word out to artists and art teachers in your community? There is NO FEE for entries, and the winning artwork will be used to design the Texas NDEAM (National Disability Employment Awareness Month) Poster to be distributed statewide (and some to other states as well) this fall. The contest is open to any Texas artist with a disability. Submission Guidelines and Entry Forms are available on our NDEAM website, or contact me for more info.     Save the Date: Barbara Jordan Media Awards April 13, 7:00pm, University of Texas at Arlington Jo Virgil, Community Outreach and Information Coordinator Texas Governor's Committee on People with Disabilities P.O. Box 12428 Austin TX 78711 512.463.5740 or Relay Option of your Choice 512.463.5745 - Fax jo.virgil@governor.state.tx.us http://governor.state.tx.us/disabilities/ … [Read more...]

Constraint Induced Movement Therapy – Henry is Using His Hand

Hexbug Toys

Holy cow, it appears to be working! Constraint therapy actually appears to be working! Henry’s reaching with his affected arm, holding objects in his affected hand and actually POINTED his index finger upon request. HOLY COW. I don’t even know what to say I am so stunned. By my last post, you understand that I really wasn’t expecting this. Clearly our work has paid off for now. What have we been doing? First, massive repeats with M&M’s as rewards. So, specifically, we have this train table where he plays with his Thomas the Train set. I sit at one end and my husband sits at the other with Henry in the middle. With his cast arm under the table and his affected arm on the table he has to hit a ball to either myself or Aaron, as directed (either fast or slow). He gets a point if he hits the ball as he’s been instructed and loses a point if he tries to hit it with his cast arm. After TWENTY points, he gets one M&M. We also held a ball above his head with the same goal. … [Read more...]

You Don’t Need Two Hands

Hemiplegia - Life with One Hand

When my daughter was seven days old, the doctors discovered that she had survived a perinatal stroke. This was the beginning of decades of physical and occupational therapy  - much of it aimed at helping her gain use of her right hand - the hand that was pretty much paralyzed by the stroke. Therapy is time consuming - making appointments, driving to appointments, constant calls to insurance companies to beg for coverage or tell them that the amount they paid was wrong (always underpaid - not a single case of overpayment), and the actual therapy in the office and exercises at home. My daughter is 19 years old now. She still doesn't use her right hand very  much, despite the decades of occupational and physical therapy. I woke up this morning and wondered - what if she'd been born without a hand? How would life have been different?  I know that we would definitely have had a lot more time for the fun stuff. I briefly searched the internet for "amputee" and went to the first … [Read more...]

Altering Jeans for Individuals with Hemiplegia

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Version 1 - Add Elastic Tabs to Traditional Jeans This alteration allows the jeans to be put on without unbuttoning, yet the waistband still stays snug. It's not the most attractive alteration, but if shirts are not tucked in, no one will notice. Purchase jeans so they barely fit or are a little snug because the elastic can make them about an inch bigger in the waist.  You will need two pieces of non-roll elastic that are 3 inches long each. Try to match color of elastic to color of jeans or find a darker color if you want this to blend in. You will slit the waistband in two places, both on the front of the jeans, about an inch from the side seam. Cut through the jeans and make cut extend  approximately 1 inch below the waistband. Serge the edges of the cut to keep them from fraying. Insert and pin the elastic horizontally inside the waistband, centering the middle of the elastic with the middle of the slit. Sew the ends of the elastic to the jeans. Remove pins. … [Read more...]

Shoe Exchange for Odd Sized Shoes

Different Sized Feet Shoe Exchange for Children and Adults with Hemiplegia or Stroke

Individuals with hemiplegia or hemiplegic cerebral palsy often wear two different sizes of shoes. For example, a child might wear a size 7 on the right foot and a size 9 on the left foot. This results in having to purchase two pairs of shoes. What do you do with the other pair? Find your sole mate! The Children's Hemiplegia and Stroke Association (CHASA) has created a group where parents of children with hemiplegia and adults with hemiplegia can exchange that unused pair of shoes. Join the Odd Sized Shoe Exchange Group! … [Read more...]

Kids with Hemiplegia Can Play the Guitar

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If you're the parent of a child with hemiplegia or any disability, you just hate to think of telling your child that you don't think they can do something. I like to think that my daughter can do just about anything - she's very determined and I always encourage her or at least keep my mouth shut. But, when she came to me and announced that she was going to play the guitar -  knowing that she has NO fine motor skills in her right hand - well, I wasn't exactly a major cheerleader at that moment. Bring in her fabulous music therapist who pointed us towards A Day's Work. This company designs and builds musical instruments and adaptive aids for person who have physical challenges. Check out their adaptive guitar picks. With the use of a hand splint with an aluminum stay (to help her hand stay in a useful position) and the adaptive pick, my daughter is strumming away to her favorite songs. Which songs? The clue is in the photo. … [Read more...]

Job Interviews – Disclosing Your Disability

A CHASA volunteer shares her personal experiences with job interviews and having hemiplegia and epilepsy. While job hunting, my decision of when and how to disclose the information of my stroke, hemiplegia, and seizures depends on the job I'm applying for and the questions I am asked in the interviews. As I volunteer my time for the CHASA, I do mention the work in my cover letter, which does indicate my stroke, but not my seizures. I have found that most employers really don't make a strong connection between the wording in my letter and my actual abilities. As far as interviews go, if I am interviewing for office jobs (administrative assistant, leasing director, etc.), I do not bring it up unless directly asked. However, when I have interviewed for Activities Director/Assistant jobs, I needed to come out and tell them as I was asked, " For trips, we have a van driver. If they called in sick, would you be willing to drive the van?" I had to be honest and say I couldn't. First, the … [Read more...]

Pediatric stroke, hemiplegic cerebral palsy, and Easter baskets

Katie

Kind of an unusual title, I know.  What's the connection between hemiplegic cerebral palsy, pediatric stroke, and Easter baskets? I'll paint the picture for you. Lots of kids in lots of places will be hunting Easter eggs this weekend.  Pretty dresses, pretty baskets, and great excitement while anticipating the hunt. It's easy, right? Spy the egg. Run to the egg. Pick up the egg with one hand. Put the egg in the basket that you're carrying with the other hand. Run to the next egg. Smile while mom or dad take photos and a video. Here's what happened to my daughter at her first Easter egg hunt.  Watch while all the kids run after the eggs. Slowly walk to an egg. Pick up the egg. Put it in the basket that I hung on her right arm - she can't hold it with her right hand - she's a stroke survivor.  Run to next egg. Fall down because she trips on a clod of dirt. Gets up. Egg gone. Walk to next egg - if there are any left because it's hard to run very fast when one of your legs is … [Read more...]

One Handed Can Opener

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Kids with hemiplegia want to be independent and the kitchen is a place where they face many challenges.  Traditional can openers are very difficult to use with one hand.  We found a simple, inexpensive product, the One Touch Can Opener, and our teens have tested it and declared it "one-hand friendly."       … [Read more...]

I Met a Girl

We met at the CHASA Retreat

Mark says... It was my first CHASA (Children's Hemiplegia and Stroke Association) Retreat and I didn't really know what to expect. Initially, I didn't want to go because I thought I would feel out of place since I didn't know anyone, but I am really glad I went and am planning to go every year now. I met some new friends like Danny, Joe, and others that I hung around with at the pool and that was great. The most important thing is - I met a girl - a girl who can relate and understand me and I can understand her as well. When she walked in the lobby doors for the first time I was like "Wow! I have to get to know her." And, I did get to know her. I'm really glad I did because now she is really special to me. Since then, I've been visiting her a lot. So far, I have racked up 8,794 miles flying between Michigan and California. Two thousand miles don't keep us apart! Courtney says... The CHASA Retreats are always the highlight of my summer.  I have gone to them since I was eight … [Read more...]