We Need Your IEP – Individualized Education Program Project

May 15, 2013 By
SCHOOL-EXECUTIVE-FUNCTIONING

We Need Your IEP! The Children's Hemiplegia and Stroke Association (CHASA) is gathering sample IEPs and other education plans from birth through college from parents of children with disabilities and we will share these on the CHASA website. We'd like to see IEPs for a child with any type of differences and are not limiting this to the groups we have traditionally served. Parents and school staff often find the development of a child's IEP to be rather challenging. It is our hope that by sharing sample IEPs, we will continue with the CHASA mission of improving the lives of children with hemiplegia or pediatric stroke. Send Your IEP to CHASA Contact CHASA and we'll send you instructions on how to send your child's IEP to us. We ask that you remove names, signatures, locations, and the school name from the IEP before you send the file to us. Sending as a pdf file is the preferred method. Please tell us the grade level of your child and the date (year) of the IEP. If you'd like to … [Read more...]

Filed Under: Education Tagged With: , , , , , , , , , ,

Our Favorite Orgs – Strong as Steel Adaptive Sports

May 13, 2013 By

May is Pediatric Stroke Awareness Month and the CHASA leaders would like to share some of our favorite organizations with you. These are folks who are doing some awesome work to help kids with hemiplegia, pediatric stroke, or different disabilities in general. Strong as Steel Adaptive Sports - Western Pennsylvania Darla Clayton's son, Trent, has survived many hemorrhagic strokes in his young life and has right hemiplegic cerebral palsy and epilepsy.  He has always been a natural runner; running has seemed to come more easily to him than walking!  When Trent tried other sports, soccer, baseball, etc., he excelled at the running parts but wasn’t a huge fan of the other sporting activities.  In the Spring of 2011, Darla and her husband decided to look into a running program for Trent. There was no adaptive track and field program in their area, but Trent wanted to run. Trent's family had some great support from other families they met through the Children's Hemiplegia and … [Read more...]

Filed Under: Adaptive Sports

Adaptation versus Innovation

May 8, 2013 By
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...]

Filed Under: Daily Living, Elizabeth's Blog Tagged With: , , , , , , , ,

Our Favorite Orgs – The Traveling Awareness Bears

May 6, 2013 By
Awareness-Bear-Logo-v1-s

May is Pediatric Stroke Awareness Month and the CHASA leaders would like to share some of our favorite organizations with you. These are folks who are doing some awesome work to help kids with hemiplegia, pediatric stroke, or different disabilities in general. The Traveling Awareness Bears, Inc. When Elijah Rutherford was first diagnosed as having survived a stroke in utero, he was 20 months old. It was 2005 and his mother, Jennifer, was at a loss of who to turn to. After searching on the internet, she came across the Children's Hemiplegia and Stroke Association (CHASA) and quickly signed up for their email support list. Through CHASA, Jennifer met three women who and they all bonded quickly with each other. The four of them leaned on each other through all their hard times and cheered each other on through all the good. Those three women kept Jennifer strong through the early years of Elijah's journey. When Elijah turned 4, he began asking questions about what was wrong with … [Read more...]

Filed Under: Pediatric Stroke Awareness

Pediatric Stroke Awareness – 31 Days 31 Ways

April 24, 2013 By
2013-pediatric-stroke-awareness-collage-ribbon-cw

May is Pediatric Stroke Awareness Month May 1 Like CHASA on Facebook. May 2 Write your child's story and share it on a Firstgiving page. The world needs to know our stories. (You don't have to fundraise on Firstgiving. You can simply share your story if you'd like.) May 3 Make this your cover picture on facebook. Photo created by Chandra Whitfield. May 4 Streak your hair purple. Invite your friends to a girl's night out at a local salon and give everyone a purple streak. May 5 Tweet daily that Kids Have Strokes, Too and provide a link to http://www.CHASA.org for more information May 6 Email the CHASA Pediatric Stroke Awareness Fact Sheet or your employer, library, or place of worship and ask them to add pediatric stroke facts or your child's story to their newsletter. May 7 Share a link to the 2013 Pediatric Stroke and Hemiplegia Awareness Montage May 8 Paint your nails purple with a ribbon design or get a Pediatric Stroke Awareness tattoo. May 9 No … [Read more...]

Filed Under: Pediatric Stroke Awareness, Volunteers, You Can Help Tagged With: , , , , , , ,

Constraint Induced Movement Therapy Camps for Children with Hemiplegia

April 17, 2013 By

Constraint Induced Movement Therapy Camps and Programs - Western United States Camp Bennett - San Francisco, CA - founded by Audrey Vernick, mom of a child with hemiplegic cerebral palsy Constraint Induced Movement Therapy Camps and Programs - Central United States Rehabilitation Institute of Chicago Constraint Induced Movement Therapy Camp St. Louis Children's Hospital Therapy Services - Modified Constraint-Induced Movement Therapy- summer intensive programs, Chesterfield, Missouri Constraint Induced Movement Therapy Camps and Programs - Southeastern United States Children's of Alabama Pediatric Constraint-Induced Movement Therapy Outpatient Program North Carolina Children's Hospital Modified Constraint-Induced Movement Therapy Camp - ages 3 to 10 years;  primarily funded by charitable contributions and grants Powerhouse Therapy- Camp Open Hands Modified Constraint Induced Therapy Camp located in Roswell, Georgia Constraint Induced Movement Therapy Camps and Programs - … [Read more...]

Filed Under: Occupational Therapy, Treatment Tagged With: , , , , , , , , , , , ,

Stroke in Children Gene Mutation – NIH Seeking Participants

April 16, 2013 By

The National Institutes of Health is looking for children with young age of onset strokes, with first stroke occurring after age 3 months.  The patients they have seen so far have had recurrent strokes over the years.  All have evidence of inflammation with elevated sedimentation rate and C-reactive protein.  Most have intermittent fevers and a mottled reddish appearance to their skin (livedo reticularis).  Some have other rashes as well and some have joint pain, often misdiagnosed as juvenile arthritis. Dr. Karyl Barron reports, "We have recently discovered a gene that is mutated in our cohort of patients and are looking for more patients that fit this description. We have a potential therapy that we will be starting soon, based on the known genetic defect.  While this is a genetic disease, it is autosomal recessive – meaning the child receives one mutated gene from each parent.  People who have only one mutation are asymptomatic – so no family history of childhood … [Read more...]

Filed Under: Research Tagged With: , , , , , , , , , , , , , , , , , ,

History of Pediatric Stroke Awareness

April 7, 2013 By

In 2002, Heidi Jameson and Nancy Atwood, CHASA (Children's Hemiplegia and Stroke Association) board members and moms of two little girls who survived strokes before birth, had a conversation about how tired they were of hearing those four little words... "Kids don't have strokes."  They set out to tell the world that Babies Have Strokes, Kids Have Strokes, and Even Unborn Babies have Strokes!  This was the birth of the first Pediatric Stroke Awareness Day and the first Saturday in May held this designation. The original 2002 Pediatric Stroke Awareness Day soon grew to an entire month of pediatric stroke awareness activities. Read a press release about our growing Pediatric Stroke Awareness movement. This grassroots effort continues today. It started with two moms and now reaches families around the world. Learn how You Can Help. Learn about Pediatric Stroke Awareness Month Proclamations. Donate to CHASA and help us help little stroke survivors. … [Read more...]

Filed Under: Pediatric Stroke Awareness Tagged With: , , , ,

These Families are Streaking for Pediatric Stroke

March 30, 2013 By
Streak for Pediatric Stroke Awareness Month

May is Pediatric Stroke Awareness Month. Do you know that CHASA proclaimed the first Pediatric Stroke Awareness Day way back in 2002?  A couple of moms were tired of hearing, "I didn't know a baby could have a stoke." Sound familiar? In May, families around the world are letting others know that Kids Have Strokes, Too. Some are asking local government to proclaim May as Pediatric Stroke Awareness Month. Others are hosting events to raise funds and awareness and our online community is setting up online Streak for Pediatric Stroke pages.  Meet a few of these families below... The Mory Family is Streaking for Pediatric Stroke Awareness - When Mikey was a few months old we noticed he was only reaching for his toys with his left hand. His pediatrician joked that we should teach him to box or pitch since he'd be a lefty. Eventually we decided this was not normal and we had him tested with an MRI. Our sweet little baby survived a stroke in-utero which damaged the left side of his … [Read more...]

Filed Under: Pediatric Stroke Awareness, You Can Help Tagged With: , , , , , , ,

2013 Pediatric Stroke Awareness Events

March 20, 2013 By
stride on for pediatric stroke

We love our volunteers! They've set up the following events to benefit CHASA and increase Pediatric Stroke Awareness. Let us know about any events you're planning that will benefit the Children's Hemiplegia and Stroke Association and help us keep Helping Kids with Hemiplegia.  This page will be updated weekly, so watch for new events or plan your own! April 13, 2013  Ride 4 Riley Hosted by the Volkel Cycling Team in honor of pediatric stroke survivor Riley Valkenburg, Netherlands   May 1, 2013 - May 31, 2013 Streak for Pediatric Stroke Hosted by Children's Hemiplegia and Stroke Association (CHASA) Virtual Event   May 4, 2103  Stride On For Pediatric Stroke Awareness Hosted by Matt & Shiloh Little in honor of their little pediatric stroke survivor, Jace Olathe, Kansas May 4, 2013 Walk for Pediatric Stroke Awareness Hosted by Annette Brennan Colchester, Connecticut May 4, 2013 2nd Annual Strikes for Pediatric Stroke Hosted by Abbe and Jeffrey Harpp, in … [Read more...]

Filed Under: Events, Pediatric Stroke Awareness, Volunteers, You Can Help Tagged With: , , , , , , , , , , , ,

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

March 14, 2013 By
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...]

Filed Under: Daily Living Tagged With: , , , , , , , , ,

Adding a Velcro Fastener to Pants – No More Buttons!

March 14, 2013 By

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...]

Filed Under: Daily Living Tagged With: , , , , , , ,

Adapting Zipper Pulls for Children with Hemiplegia

March 14, 2013 By

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...]

Filed Under: Daily Living Tagged With: , , , , , , , ,

Elastic Waist Jeans for Kids and Adults with Hemiplegia

March 14, 2013 By

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...]

Filed Under: Daily Living Tagged With: , , , , , , ,

New York Childhood Stroke Picnic

March 13, 2013 By
New York Picnic - Families of Children with Hemiplegic Cerebral Palsy

Mark your calendars for the New York Childhood Stroke Picnic!! Our 2013 picnic is officially booked Sunday July 7th, 11am We will be in the same space as last year. Wantagh Park 1 King Road Wantagh, NY Covered picnic area Parking fee: $10.00 at the gate Please bring your family and friends - we had a great turnout last year and would love to see that number increase this year. Please sign up for any of the following: Volunteers to assist with: Check in and sign out of guests (just to keep track of who came, and hand out gifts to children when they leave) Assist with organized games for the children Cooking (BBQ) Set up/Clean up Items to bring: Paper goods (plates, napkins, cups) Drinks/cooler (water, soda, juice boxes) snacks (chips, cakes) food to share (anything you feel like making that will make it through the July heat - salads, etc) sports equipment (for kids to play) - there is a nice open area Join the CHASA New York – Meetup Group for more … [Read more...]

Filed Under: Events, Local Groups Tagged With: , , , , , ,