Category Archives: Tips for Parents

It’s Spring: Time to Get Kids with Cerebral Palsy Moving

By Lee Vander Loop

In spring, parents start thinking about recreational activities for their children. The disabilities community is no different.  Medical research and personal experience show that people with disabilities benefit greatly when they participate in community recreation programs and settings.

Following is information about the importance of physical activity for children and adults with physical impairment,  links to organizations that offer activities, adaptive equipment resources and air travel information.

Find your State and Local Sports & Recreation Programs in our Resource Guide. New entries added daily!

Importance of Physical Activity

  • The  U.S. Surgeon General’s report indicated that all people can benefit from physical activity. People with disabilities and chronic illnesses have a tendency to be less active due to their physical limitations. This inactivity can lead to decreased cardio-respiratory fitness, osteoporosis,  increased dependence on others, a decrease in social interactions and secondary complications.
  • The primary physical activity goals for individuals with disabilities are to increase physical functioning and enhance health and well being.
  • Sports, social events, nature, camaraderie, friendship and overcoming physical and psychological challenges are vital building blocks of early childhood development. Sports, activities and social interactions and events offer children of all abilities avenues for growth.

Accessible Recreation

Many states throughout the country have made efforts to accommodate the special needs populations of their communities with adaptive and accessible recreational and sporting activities. “Open the Outdoors” is a nation-wide effort to provide disabled individuals with accessible recreational opportunities. Many of our National forests provide accessible recreation such as wheelchair accessible campsites, restrooms and trails. Contact any State Department of Natural Resources or Parks and Recreation for brochures and information on accessible parks, adaptive and accessible sports and recreation programs in that state.

The American Association of Adapted Sports Programs, The National Center on Accessibility and the Adaptive Sports Foundation are all examples of national efforts to promote access and inclusion for people with disabilities in parks, recreation and tourism.  Based at Indiana University, and established in 1992 through a cooperative agreement with the National Park Service, NCA has emerged as a leading authority on access issues unique to park and recreation programs and facilities.

Adaptive Sports and Recreation

Many times adaptive equipment is made available or can be purchased from a variety of manufacturers and suppliers, to provide for a safe, enjoyable experience.

  • A large variety of sporting activities have been made available as a result of adaptive equipment and instruction.
  • Skiing, bowling, archery, hunting, fishing and sailing are just a few recreational activities that offer adaptive participation.
  • Playgrounds are being constructed with accessibility being the focus in architectural design.
  • The Adaptive Sports Foundation boasts the largest adaptive sporting program on the East Coast and is considered among the top adaptive programs in the country.  The Adaptive Sports Foundation offers both winter and summer sporting events and programs.
  • The Special Olympics programs can be found in every state and many communities around the country. Today Special Olympics consist of almost 3 million athletes in more than 180 countries around the world.

Many volunteers from the private sector help to provide funding and support for many programs. One example is the W.K. Kellogg Foundation Access to Recreation grant program, which has provided $15 million in funding to 36 recreation projects in four Midwestern states over the last three years. Projects were selected based on:

  • Their concepts for embracing universal design
  • Opportunity to facilitate inclusion of people of all abilities
  • Opportunity to serve as an example of universal design to community planners, recreation practitioners and advocates

Many nonprofit organizations such as United Cerebral Palsy, YMCA, Association of Retarded Citizens and Easter Seals offer a variety of adaptive and accessible recreational programs for youth and adults with disabilities in many states and locations.

Air Travel

For air travelers, the Air Carrier Access Act of 1986 (ACAA) was passed to eliminate accessibility barriers for disabled passengers traveling on commercial air carriers. Information from the carrier and a booklet provided by unitedspinal.org provides people who use wheelchairs and other mobility aids with all the information they need to have a safe and enjoyable flight.

Information, Publications and Resources

Online information such as Gimp on the Go provides publications and information for a large variety of accessible destinations and recreational opportunities.  The National Center on Physical Activity and Disability (NCPAD) is an information center concerned with physical activity and disability. The NCPAD provides free monthly electronic newsletters on a variety of fitness and recreational activities as well as online links to Fun and Leisure Activities through the country.

Sources

U.S. Department of Health and Human Services, The 2005 Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities: Calling You to Action. U.S. Department of Health and Human Services, Office of the Surgeon General, 2005

American Association of Adapted Sports, adaptedSPORTS Model.

Adaptive Sports Foundation, Adaptive Sports Center.

Easter Seals,  Fun with a Purpose.

National Center on Physical Activity and disability(NCPAP), FACT SHEET,  Durstine, J. Larry, et al “Physical Activity for the Chronically Ill and Disabled“, Sports Medicine 2000 30.3: 207-219z.

The National Center on Physical Activity and Disability, NCPAP, Fun and Leisure.

National Sports Center for the Disables, NSCD National Sports Center for Disabled – Adaptive Sports.

Special Olympics, Special Olympics Home.

United Cerebral Palsy, Sports and Leisure.

A Mother’s Quest to Feed Her Child

When you’re having a child, all you really care about is that he or she is healthy. Unfortunately, life doesn’t always work out that way. My husband and I discovered this the day our son, AJ, had a major seizure when he was 5 months old. Following that were diagnoses of cerebral palsy (CP), epilepsy and global developmental delays. Like many others with CP, AJ was put on a feeding tube. While necessary, I found the feeding tube was counterintuitive to my instinctive desire to nurse and nourish AJ. Not being able to do this for my son made me feel helpless.

However difficult the introduction of a feeding tube would be, we expected AJ’s troubles to slowly fade and to see more growth (in height and weight), better sleep, and most importantly, a happier little boy. Nothing could have been further from the truth.

AJ constantly struggled to digest the prescribed amounts of formula, and he would be sick multiple times a day. We tried eight different formulas, made changes to how and when we fed him, and did everything we could to keep him healthy – but nothing was working. The sicker he became, the more we thought there was something else the doctors needed to diagnose.

During this period, we began looking for answers online. I found a small community of amazing people on sites like Food for Tubies and the Adult G Tube Feeding Facebook group. Their inspiring stories helped me to see that the digestive problems were not due to some inherent physical problem with AJ, but instead they were a result of how his body reacted to the formula we were feeding him, which was typically at least 50 percent corn syrup. We realized that there might be a very simple answer in my own kitchen: real food. The people I met through these sites encouraged me to try blending meals for AJ’s feeding tube.

So we decided to take the plunge into a blenderized diet. We started off slow, giving AJ some baby food through his tube. We couldn’t believe how big of a difference it made! AJ responded to the new meals and his health and spirit improved rapidly. He began gaining weight, was more active, and most importantly was finally the happy little boy we hoped he would be.

Our story is that of many people. We were welcomed into a community that had been through what we’d been through, who generously shared their experiences to help AJ, as well as my husband and me. From this community we learned that we had alternatives to commercial formulas; options that were safe and proven to be effective.

The decision to look to real food meals was one of the heart, but moving forward with it was one of the head. I wish it didn’t take me as long as it did to realize this. I would recommend anyone with CP who is struggling on a formula to try a blenderized diet. My son’s transformation into the happy, healthy boy he is today feels nothing short of a miracle, and as a parent it feels great knowing I am producing the nourishment he needs.

Julie Bombacino is CEO of Real Food Blends, maker of all-natural blenderized meals for feeding tubes. She lives with her husband and two children in Chesterton, Indiana. For more information on blenderized diets visit http://realfoodblends.com/.

Photo credit: Stephen Serio

5 Ways to Help Siblings Understand Your Child’s Cerebral Palsy

Lizzy's Sister

It should not be surprising that we received a lot of feedback on the community question: “How do you explain your child’s cerebral palsy to other siblings to help them understand?” There are more than six million people with disabilities living in the United States alone, and most of these people have brothers and sisters. As organizations like the Sibling Support Project suggest, growing up with a special needs sibling brings up its own unique issues and concerns.

Children who grow up with a special needs sibling are often under more stress. They may feel guilty for being the “healthy” sibling and try to overcompensate by setting higher expectations for themselves. They worry about taking care of their special needs sibling when they get older. Some children don’t understand what the condition is and worry that they might catch it too. They may even feel jealous or resentful because they are not receiving mom and dad’s full attention at a time when they need it most.

We know that raising a family with a mix of typical developing and special needs children is especially challenging. With the advice given by other families on our Facebook page, along with some additional research, here are the five ways parents can help children understand their sibling’s cerebral palsy:
 
1. Be Honest
When your children ask questions about their brother or sister’s cerebral palsy, explain it to them in a way they will understand. Younger children may wonder why an older sibling cannot walk or talk yet, but if you explain that little Johnny has a “brain boo-boo,” that may be easier to understand. As children get older, you can give a more detailed explanation.

2. Give Each Child One-on-One Time
Pick a specific time every day or week to catch up with each child individually. Maybe you plan a weekly dinner date for just the two of you, or take an evening stroll through the neighborhood. Not only will you be acknowledging your child’s individual needs, you’ll be creating memories that your child will remember for life.

3. Keep Siblings Involved in Your Child’s Care
Sharing responsibilities may help siblings understand the extra care required when raising a disabled child. Asking for help with simple tasks will also give them a sense of purpose, making them like feel part of the team rather than in the way.

4. Encourage Them to Have Their Own Identity
Sometimes children feel like they live in the shadow of another sibling. Allow them to be themselves. Let them know that it’s ok to live their individual lives. Help them find out their talents by joining clubs and socializing with other children.

5. Know When to Seek Outside Help
Sometimes children will act out for attention by pretending to be ill. Or you’ll notice signs of depression, anxiety, or anger. If you witness any behavioral changes in your child, it may be necessary to speak to a professional counselor or therapist. Because children with disabled siblings are prone to higher stress levels, addressing issues of “acting out” sooner will prevent future strain on the family.

The Good News

There is also some great news! According the the New York Langone Medical Center, growing up with a sibling with special needs has its benefits. These children tend to develop skills like problem-solving, flexibility, teamwork, and compassion, all of which are very important in the real-world.

Is your family a mix of typical developing and special needs children? Have you had any issues with sibling rivalry? What other advice can we add to this list? Share your thoughts below!

 

Sources

“How do you explain your child’s cerebral palsy to siblings to help them understand?”

About Our Kids – Siblings of Children with Special Needs

Sibling Support Project

FOXnews – Siblings of Disabled Kids May Have Problems Functioning

NYT – Growing up with a disabled sibling

 

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