by Kyle Khachadurian, External Affairs Intern, Kaitlyn Meuser, External Affairs Intern and Michael Wothe, Affiliate Services and Public Education Intern at UCP’s National Office
Recently, we took a trip to UCP of Central Pennsylvania (UCP of CPA) in order to get a taste of what an affiliate does and how it operates. The first thing we noticed is that UCP of CPA is huge! Working in UCP’s national office, we interact with people through referring them to their local UCP affiliates and/or other resources. Seeing, firsthand, an affiliate that treats the slogan “life without limits” in such a direct way refreshed all of us.
[Left: Staff from UCP National and UCP of Central Pennsylvania at Pathways Academy]
The work going on at UCP of CPA is quite spectacular. We were able to visit several of their departments and programs: Pathways Academy, a residence for adults with disabilities that is fully equipped with SmartHome technology. The SmartHome technology consists of sensors on all of the windows, doors, and even chairs and beds to let the house staff know if any of the residents may have left and need assistance.
[Right: Interacting with children at the Capital Area Children's Center]
Our next stop was at their Capital Area Children’s Center, which is a preschool for young children, ages six weeks to five years old, with and without disabilities. The school has 75% of its students without disabilities and 25% with a range of disabilities. Aside from various therapies, which happen in the classroom, the children with disabilities are taught the same things, at the same pace, as the children without disabilities– and it works. When we visited, a 4-year-old girl came up to us and said hello. She started telling us how she was graduating the following day. We later learned she was non-verbal when she began school there! It was absolutely incredible to be able to see the “real world” results from the programs at UCP of CPA.
The last stop on our UCP of CPA journey was at their Assistive Technology/Changing Hands Center. There, we seemingly saw every kind of assistive technology you could possibly think of, and several that you’d never think of, such as a button shaped like a face. There was also a pile of board games that were all in braille. After that, we saw the Changing Hands Center that was a sort of “exchange” for mobility aids and devices. If someone needs a type of device, he or she calls and asks for it. If UCP of CPA has one available, the device gets cleaned, and the person comes to pick it up free of charge. You can also donate old equipment that you no longer need to the Changing Hands Center.
[Left: Checking out board games in braille]
The striking thing about the work this UCP affiliate is doing is that their passion for what they are doing is apparent and absolutely infectious. It was great to see the positive impact technology can have on the lives of individuals with various disabilities, as well as the positive impact that early intervention and inclusion can have on young children — seen from the bright, smiling faces of the kids enrolled at UCP of CPA’s Children’s Center. Nearly all of the staff we met has a connection with cerebral palsy or other disabilities, be it a family member, friend or loved one. They treated us like we belonged there, and we truly felt welcomed. UCP of CPA is a shining example of the great work UCP affiliates are doing across the United States, in Canada, and Australia!
Toys“R”Us® announced the release of its 20th Anniversary edition of the Toys“R”Us Toy Guide for Differently-Abled Kids®, an easy-to-use toy selection resource for those who know, love and shop for children with disabilities. Now in its second decade of annual publication, the complimentary shopping guide is a go-to for families, friends and caregivers involved in the special needs community, and is available in Toys“R”Us® and Babies“R”Us® stores nationwide, as well as online at Toysrus.com/DifferentlyAbledin both English and Spanish. This year, Toys“R”Us is teaming up with baseball World Champion, proud father and special needs advocate, Albert Pujols, who appears on the cover alongside Cameron Withers, a 5-year-old boy from Los Angeles.
While Pujols is known for his passion on the diamond, his dedication to the special needs community is even greater. As a parent to a daughter with Down syndrome, Pujols serves as a vocal advocate for children with special needs through the Pujols Family Foundation. Since 2005, the Pujols Family Foundation has worked diligently to provide children and families living with Down syndrome with the tools they need to thrive. As part of the launch of this year’s Guide, Pujols will bring that same devotion to his partnership with Toys“R”Us in helping to reach its customers nationwide and raise awareness of this one-of-a-kind resource.
“As a proud dad to my beautiful daughter, Bella, who lives with Down syndrome, I understand how important it is to have resources like the Toys“R”Us Toy Guide for Differently-Abled Kids to help in making informed choices to support a child’s development. And, as a professional athlete, I truly value the importance of play and recognize the impact it has in the lives of children who face everyday challenges – for these kids, playtime is not just about fun, it’s an opportunity to explore their strengths and experience success in reaching each new milestone,” said nine-time All-Star baseball player, Albert Pujols. “I have a tremendous amount of passion for this cause, and I’m excited to partner with Toys“R”Us to make it easier for gift-givers to find toys for the special needs children in their lives that will inspire their imagination, encourage inclusive play and help them develop new skills.”
Trusted Toy Recommendations Tailored to Children’s Individual Abilities
Serving as a trusted resource for family, friends and caregivers of children with special needs, the Guide is packed with everyday playthings selected for their unique ability to help kids build critical skills, such as creativity, fine and gross motor and self-esteem, during playtime. Each of the toys featured in the 63-page buying guide has been vetted in partnership with the National Lekotek Center, a nonprofit organization dedicated to making play accessible for children of all abilities.
To equip parents with targeted recommendations as they set out in selecting a toy for their child’s specific set of abilities, each toy in the Guide is paired with skill-building icons, which help users easily identify the playthings that are most suitable for the child they’re shopping for. The following are examples of toys featured in the 2014 Guide, highlighted by the skill they promote:
- Auditory: Baby Einstein Octoplush from Kids II®
- Creativity: Mega Bloks Build ‘n Learn Table from MEGA® Brands
- Fine Motor: Hot Wheels KidPicks Super 6-in-1 Track Set from Mattel®
- Gross Motor: Monster Dirt Diggers from Little Tikes®
- Language: Doctor Role Play Set from Melissa & Doug®
- Self Esteem: Classic Doodler with 2 Stampers from Fisher-Price®
- Social Skills: Elefun & Friends Chasin’ Cheeky from Hasbro®
- Tactile: Cyclone from Radio Flyer®
- Thinking: Connect & Create Geometric Set from Imaginarium™
- Visual: Marker Maker from Crayola®
Through the Toys“R”Us Children’s Fund, Toys“R”Us, Inc. has long supported the special needs community through organizations such as: American Society for Deaf Children, Autism Speaks, the Pujols Family Foundation, HollyRod Foundation, Muscular Dystrophy Association, National Down Syndrome Society, National Lekotek Center, National Organization of Parents of Blind Children, National Center for Learning Disabilities, Special Olympics, Spina Bifida Association and United Cerebral Palsy. For more information, please visit www.toysrusinc.com/charitable-giving/
Shopping the Guide, In-Store, Online and On-the-Go
Those who prefer to browse online can take advantage of the shop-by-skill option at Toysrus.com/DifferentlyAbled. Customers can narrow their toy selection by focusing on a specific skill to refine their search. Shoppers can also view the Guide via their smartphone by scanning the QR code featured on dedicated signage located at their Toys“R”Us store’s Customer Service Desk. Those searching for mobile apps can also download the official Toys“R”Us App Guide for Differently-Abled Kids. Using the same skills criteria featured within the traditional Guide, the App Guide provides a convenient, on-the-go resource for viewing, researching and comparing mobile apps designed to build individual development skills for children of all ages. All apps featured within this helpful resource can be found in the App Store for iOS or the Google Play Store for Android.
In addition to finding toy recommendations, parents can peruse the Guide’s “Top Ten Tips for Buying Toys,” prepared by the National Lekotek Center, as well as “Safe Play Tips for Children with Special Needs,” which were created based on research collected from leading safety and special needs organizations, to help avoid playtime injuries.
Join the Conversation Using #ToysforAll
Throughout the year, Toys“R”Us will continue to leverage its social media channels, including Facebook, Twitter, Instagram and Pinterest, to share toy-buying tips and recommendations found in the Guide, as well as exclusive behind-the-scenes content from the cover shoot with Albert Pujols. The company is encouraging fans and followers to join the conversation and support the power of play in the lives of all children by using hashtag #ToysForAll. For more information about the Toys“R”Us Toy Guide For Differently-Abled Kids, visit Toysrus.com/DifferentlyAbled.
by O’Ryan Case, UCP’s Manager of Public Education Programs
Debbie Thorpe, PT, PhD
The University of North Carolina at Chapel Hill
Summer is underway! A short while ago, we talked about the importance of inclusive summer camps and, this month, we are highlighting the many benefits that swimming brings to individuals with a range of disabilities (well, all individuals to be exact!).
I recently had the pleasure of speaking with Dr. Deborah E. Thorpe, a physical therapist who who is an Associate Professor at The University of North Carolina at Chapel Hill. Dr. Thorpe led Project ACT NOW (Adults with Cerebral Palsy Training to Increase Overall Wellness), which investigated the effects of aquatic exercise on fitness and participation of adults with cerebral palsy (CP). See below to check out the interview!
Interview with Dr. Deborah E. Thorpe (DT):
Thanks so much for speaking with me and sharing your expertise around aquatic exercise with our UCP audience! I’ll begin with the workout that swimming brings. I have spastic diplegic CP and, whenever, I swim, it really feels like a complete workout. Can you tell me a little more about why this is and why I feel this way?
DT: It’s because aquatic exercise is a whole-body workout. When you exercise in the water, you’re moving against resistance the entire time– and this is a lot more resistance than what is felt on land. Water applies variable resistance, so the slower you move through water, the less resistance you experience against your movements. Conversely, the faster you move through water, the more resistance you experience. When you push ten pounds worth of force through water, you’re getting ten pounds pushed against you. Every muscle group can be exercised against resistance much easier in the water than on land. Also, for individuals with muscle weakness and limited range of motion, different movements, such as abduction, can be very difficult on land. But in the water, properties like buoyancy (the upward force of the water pushing against the object that is being submerged) make these movements much easier.
You’re right. I’m able to do much more with my legs when I’m in water than when I’m on land. Can you explain water’s buoyancy a bit more?
DT: Water’s buoyancy affects the amount of weight bearing on your legs. When you’re in waist-deep water, your legs are only having to support 50% of your body weight. In chest-deep water, your legs are only having to support 25% of your body weight. In neck-deep water, your legs are only supporting 10% of your body weight. Moving in water is so much easier for individuals with neuromuscular challenges, such as CP. If individuals have a hard time standing, I’ll put them in chest-deep water and they can stand and many times walk with their feet flat on the bottom of the pool. Once they get stronger, we’ll move to waist-deep and then knee-level water. Then, before you know it, they’re in mid-calf water.
So in addition to making the movements much easier, what other kinds of benefits come with swimming and other aquatic exercises?
DT: Well, it’s a safer environment in which to try more risky movements. I can’t get all of the kids I work with to jump off a step when they’re on land. But if I ask them to jump while they’re in the water, they feel safer and safety isn’t much of an issue. I can get people to jump up and down, or stand on one leg without losing their balance, which may be very difficult on land. If they fall in the water, they will not get injured.
I mentioned it brings a total-body workout and helps with increasing range of motion in most muscles. In chest-deep water, the hydrostatic pressure produced by the water pushes against and gives a quick stretch to your diaphragm. It works the muscles in your chest– kids with CP tend to take short breaths, which is why some have softer voices, as they’re not filling their lungs all the way up with air and have trouble pushing air out of their lungs. When water is pushing against your diaphragm and providing resistance, by breathing you’re building up its strength and increasing the ability for the lungs to expand more and, ultimately, you can take in more air; it can definitely help with breathing.
Additionally, this hydrostatic pressure pushes on organs, such as the bladder and bowels and helps these organs to better perform. What do we all do after a half hour or so of aquatic exercise? Go to the bathroom!
Wow, that’s a lot! Do these benefits tend to last?
DT: Anecdotally, adults with CP and parents of children with CP have told me that they’ve seen these types of benefits last for up to 24 – 48 hours.
The hydrostatic pressure produced in the water is a natural pump. Being in water is almost like wrapping an ace bandage around your calf moderately tight. The pressure of the water pushes lactic acid (which you build up while exercising and is what makes your muscles sore) out of the muscles at a faster rate than when doing land-based exercises.
So just to confirm, would you say these benefits apply to individuals of all ages and with all types of disabilities?
DT: Absolutely. I’ve worked in the water with babies, as well as individuals in their 70s. And I’ve worked with individuals with CP, Down syndrome, spina bifida and more. There is no one who can’t go in the water. For someone who has a tracheostomy, more precautions need to be addressed, such as making sure water doesn’t get into the trach. If someone has a seizure disorder, you have to make sure the seizures are controlled and monitor him or her closely.
Let me tell you about one woman with whom I have worked with in the water. She has spastic quadriplegic CP and has used a power wheelchair since she was a child. She basically has only limited movement in her hands out of water– but in neck-deep water, I have seen her running!
That is incredible. Another thing about swimming that I’d point out is that it’s something people of all abilities can enjoy– it’s fun! Can you talk a little bit about that?
DT: It also brings so many psychological benefits. I put all kids, no matter what their ability level is, in the water together. It’s amazing to watch them play basketball in the pool. Water “levels the playing field” and they all have a lot of fun. So in addition to the physiological and safety advantages, there are psychological ones involved as well.
Take kids who want to play t-ball. We play in the water! With the water resisting their movements and them having to fight the currents that are created in a pool from people moving around, the core is being strengthened. So you not only get stronger, but your balance improves.
What kind of timetable do you see with these types of results?
DT: Everyone is different, so it all depends on the person and their abilities. But I’ll give you an example. I worked with a twenty-one year old man with spastic diplegic CP, who was an assistant head coach for his college’s baseball team. He told me he was always tired and that he wanted to gain strength so that he could do fun things after class and baseball events (just like every other college student). His upper body was very strong but his legs were very weak and atrophied. He came into my program and we worked for 45 minutes, three days per week for ten weeks. At the end of those ten weeks, I measured his function– he gained 200% in strength in both of his legs! Also, he was able to walk around the living room for the first time without using his forearm crutches!
I also did a study with adults, where we worked three times per week for twelve weeks. Results indicated a trend toward improving their bone-mineral density. I can’t say this was directly a result of aquatic exercise but they were definitely increasing their strength. The ones who walked were walking further and faster– and the water seemed to be the catalyst. Unfortunately, at a six-month follow-up assessment, a majority of their assessment measures were back to their baseline. Only a few had joined a facility where they could exercise in the water. When they were in the study, they were provided with a pool membership for the course of the study and had camaraderie during their exercise sessions and tons of support. When the study ended, those supports went away.
I can say that having a chance to interact and train with other individuals who have disabilities would be fun and bring a sense of comfort. It’s certainly different when I may be the only person in the water or at a gym with a disability.
DT: I understand. I’ve been researching these types of barriers. Cost is a major barrier– a pool or gym membership that costs $35 per month is tough. Transportation is a barrier. And feeling like no one at a pool or gym knows what you can and cannot do is another barrier to exercise. Let me point out that there are personal trainers out there who are American College of Sports Medicine (ACSM)- certified in working with individuals with chronic disabilities. These trainers will likely have at least some familiarity working with individuals with disabilities– so that would be something for individuals and families to consider is to check with exercise facilities to see if any of their staff has this certification.
All of this information is helpful. What would you tell an individual with a disability or a family member who wants to know ways to become involved with aquatic exercise or aquatic therapy?
DT: First, I’d suggest getting a physical therapy evaluation. Get a prescription for an aquatic therapy evaluation from your primary care provider. The physical therapist will evaluate the individual on land and tell them the areas needing improvement (i.e. strengthening, flexibility, cardiorespiratory conditioning, etc). Insurance should pay for the physical therapy evaluation. After this evaluation, the therapist will then take the individual in the water and develop an aquatic exercise/therapy program for them. Note that aquatic exercise and aquatic therapy are different. You have to have a doctors prescription to get aquatic therapy but, with aquatic exercise, you can go to any pool and exercise in the water. Also, a good resource to check out is the National Center on Health, Physical Activity and Disability (NCHPAD). There are a lot of exercise videos on its website.
So, as we wrap up, do you have any other closing remarks that you would like to share?
DT: To the parents and caregivers that UCP serves, I would say get your children comfortable in the water. Parents can get very apprehensive about putting their children in the water– but consider enrolling them in swimming lessons. Remember, there are safe flotation devices out there. I would also suggest finding a physical or occupational therapist who does aquatic therapy and can do an evaluation and come up with an individualized program. Finally, remember that a big factor with swimming is its social aspect. Kids can become bored with physical therapy but aquatic exercise and swimming can happen anywhere– like we said earlier, it’s fun! I’m a huge proponent in getting involved in community-based physical activity. I want individuals of all abilities to go out and participate with their peers.
It was such a pleasure learning more about the types of physiological, psychological and other benefits that come with aquatic exercise. Dr. Thorpe was also kind enough to share this video of someone she has worked with.
If you would like to learn more about aquatic therapy, you can contact Dr. Thorpe at firstname.lastname@example.org or me at email@example.com.
The World Health Organization recently released, Born Too Soon: A Global Action Report on Preterm Birth. The report features the first-ever estimates of preterm birth rates by country and is authored by a broad group of 45 international multi-disciplinary experts from 11 countries, with almost 50 organizations in support. This report is written in support of all families who have been touched by preterm birth. Findings show that rates of preterm births are increasing however premature babies can be saved now with feasible,cost-effective care. An Executive Summary highlights the key findings of the report.
The National Association for the Education of Young Children and the Fred Rogers Center for Early Learning and Children’s Media at Saint Vincent College issued a joint statement on the use of technology and interactive media with young children. The statement is meant to provide research-based guidance to all those who care for young children as they consider if, when and how to use technology and interactive media in early childhood programs (schools, centers, family child care) serving children from birth through age 8. Read the full Statement.
The American Academy of Pediatrics released a new clinical report, “Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy”.
The report reviews the aspects of care specific to cerebral palsy that a medical home should provide beyond the routine health care needed by all children such as diagnosis, planning for interventions, authorizing treatments, and follow-up, and optimizing health and well-being for children with cerebral palsy and their families.
The CDC recently released this American Academy of Pediatrics (AAP)-endorsed curriculum which is designed to educate future pediatricians on identifying, diagnosing, and managing autism spectrum disorders through case-based scenarios. The curriculum is a flexible, interactive learning tool that emphasizes practical skills for patient and parent interaction. The full curriculum and videos are available online
A new clinical report from the American Academy of Pediatrics explores the multi-faceted issues and needs faced by families of children with disabilities such as health care services, social and financial support, care coordination,and transition services–and how these families can best be served.
Parent-Provider-Community Partnerships: Optimizing Outcomes for Children With Disabilities explores the challenges of developing effective community-based systems of care and offers suggestions to pediatricians and policy-makers regarding the development of partnerships among children with disabilities, their families, and health care and other providers to maximize health and well-being of these children and their families.
So I haven’t been on for a while so let us just recap on how things are going.
There are three parts to the project we need to work out,
One the input ( the actual tracking of the eye)
Two the actual software running on the arduino
Three outputting the data back to the computer
The first part is going well the eye tracking software is semi- useable at this point. There is still some inaccuracy but in good conditions it is good enough to hit a small button. There are a few things holding this back, one the camera is not a in color or a high resolution. The camera is also not mounted onto a pair of glasses as we are planning to this causes it to move in relation to your eyes and then thereby cause shifts on the screen and the nouse not being exactly where you are looking. So these should be easily solved once we mount a good camera in a pair of glasses.
The second part is currently the hardest. We are trying to some how run a majority of the software on the micro-controller, even the it supports the .NET framework used by the software and has expandable memory to fit the software. We still need to cross compile it to work on the arduino this is mainly what I am working on.
The final step is actually outputting to the PC. This is why we are using the Wii remote; for it’s bluetooth capabilities. We need to unsolder the accelerometer and use those inputs once we are done the rest of the software.