HBO to Premiere MISS YOU CAN DO IT Pageant Doc 
on 6/24

One special weekend every year, the small Illinois town of Kewanee (population 12,916) turns into a place of celebration and delight, as the annual Miss You Can Do It pageant spotlights young girls with disabilities from around the country. Abbey Curran, Miss Iowa 2008, started the pageant in 2004 to offer these girls, who like herself have special needs, the opportunity to be celebrated for their inner beauty and spirit.

Directed and produced by Ron Davis (“Pageant”), MISS YOU CAN DO IT tells Curran’s story and follows eight heroic young girls with physical and mental disabilities as they participate in the pageant when it debuts MONDAY, JUNE 24 (9:00-10:15 p.m. ET/PT), exclusively on HBO.

Other HBO playdates: June 27 (11:30 a.m.) and 30 (8:30 a.m.), and July 2 (1:30 p.m.) and 6 (3:00 p.m.)

HBO2 playdates: June 26 (8:00 p.m.) and 28 (5:15 p.m.), and July 9 (11:35 p.m.), 25 (7:40 a.m.) and 27 (8:40 a.m.)

HBO Documentary Films presents another weekly series this summer, debuting provocative new specials every Monday, June 10 to Aug. 12. Other films include: “Pussy Riot: A Punk Prayer” (June 10); “Love, Marilyn” (June 17); “Gideon’s Army” (July 1); “Gasland Part II” (July 8); “The Crash Reel” (July 15); “The Cheshire Murders” (July 22); “First Comes Love” (July 29); “Casting By” (Aug. 5); and “Americans in Bed” (Aug. 12).

Diagnosed with cerebral palsy at age two, Abbey Curran never accepted her physical limitations. She admits her disability comes with lifelong challenges, but none that hold her back, playing sports (she “just falls more”) and driving a car with a special steering wheel and brake. Curran’s resilience and determination to pursue her dreams led her to become the first woman with disabilities to compete in the Miss USA Pageant(R) in 2008.

MISS YOU CAN DO IT highlights the extraordinary work Curran is doing with the pageant she founded. Curran and a team of enthusiastic volunteers give participants a chance to be celebrated for all they are inside, not just defined by what the world sees on the outside. For one special weekend the young girls, along with family and friends, some who have traveled far distances, spend time in an oasis of fun, femininity and celebration.

No one leaves the pageant empty-handed, with each girl receiving a special award. The real winners of the pageant might be the families and friends, who proudly cheer them on from the audience.

Among the girls and families profiled are:

Five-year-old Tierney, who gleefully zips around in a powered wheelchair in excited anticipation of the pageant, while her mom explains that she’s never walked and will progressively lose movement throughout her body. Tierney has spinal muscular atrophy type II, a slow deterioration of all muscles.

Natasha, 14, who was born with cerebral palsy and suffers from seizures, and Kenna, her younger sister, who has intellectual disabilities. Despite these challenges, “they are a happy-go-lucky family,” according to their proud parents.

Precocious six-year-old Ali, who has four best friends, one mischievous and imaginary, and three in their 60s: Judy, Judy and Rock, who enjoy watching Ali’s physical therapy sessions on a horse, which helps with her balance. Ali was born with spina bifida, a hole in the spine that caused paralysis of her lower body.

Teyanna, a smart and creative preteen, whose mother says that after she was born, a nurse suggested they put her in an institution, but they refused and raised her at home. Teyanna has speech difficulty due to cerebral palsy.

Seven-year-old Daleney, whose parents say her biggest frustration is her lack of independence. Still, she never shows it, even if she takes 15 minutes to tie her shoelaces. Daleney is a quadriplegic with a spastic form of cerebral palsy, causing her to have too much muscle tone and making her limbs cross her midline when she walks.

Tiny Meg, who is shy, except when she’s with her brothers. Wanting Meg to have a sister to connect with, her parents adopted Alina, a girl from Ukraine. Both Meg and Alina have Down syndrome.

MISS YOU CAN DO IT celebrates the heroism of their parents and families, who openly describe how the heartbreak of learning that their child was different quickly gave way to loving patience, dedication and a new appreciation for the joys and challenges of raising a child with special needs.

Says Curran, “I hope that my Miss You Can Do It girls leave this pageant knowing that, okay, we might fall down, or someone might stare at us, but I just did something amazing. Something that not very many people get to experience.”

Pageant volunteer Jan Selman adds, “Miss You Can Do It is not about what’s wrong with these girls. It’s about celebrating what’s right with them.”

Ron Davis began his filmmaking career at the New York Film Academy, where his first two short narrative student films, “The Business Traveler” and “The Garden,” earned him a top-ten finalist spot in the 2004 Esquire Magazine Celluloid Style film competition. His first documentary, “Pageant,” garnered ten film festival awards.

Read more about HBO to Premiere MISS YOU CAN DO IT Pageant Doc on 6/24 – BWWTVWorld by tv.broadwayworld.com

Summer Heat Safety Tips

By Lee Vander Loop
CP Family Network Editor

Summer is nearly here! Kids are anxiously awaiting the end of the school year and families are beginning to plan summer outings, vacations and outdoor adventures. It’s a time of sports, outdoor play, family gatherings, and warmer weather.

With the additional sun exposure, we as parents have the responsibility of keeping our kids safe during the long, hot days of summer. We’ll highlight some of the risks the summer heat poses and what you can do to protect your children and family for an enjoyable, healthy and safe summer.

Protecting Kids from Sun Exposure

Many of us are all too familiar with the pain of sunburns. For parents of children with special needs, extra vigilance is needed. A non-verbal child cannot communicate to you when they are thirsty or feeling the effects of excessive sun exposure. Kids don’t have to be at the pool, beach, or on vacation to get too much sun. Their skin needs protection from the sun’s harmful ultraviolet (UV) rays whenever they’re outdoors. The American Academy of Dermatology estimates that kids get 80 percent of total sun damage by the age of 18. Sunburn also affects your body’s ability to cool itself and causes a loss of body fluids. Follow these tips to keep your family safe this summer.

Timing is Everything

• Seek shade. UV rays are strongest and most harmful during midday, so it’s best to avoid outdoor activities during this time. If this is not possible, seek shade under a tree, an umbrella, or a pop-up tent. Remember, it’s important to take precautions before a sunburn occurs, not once the damage is done.

• Cool and cloudy? Children still need protection. UV rays, not the temperature, do the damage. Clouds do not block UV rays, they filter them—and sometimes only slightly. Make sure to take proper precautions even when the sun isn’t shining.

Cover Up

• Protective clothing. Clothing that covers your child’s skin helps protect against UV rays. A T-shirt, long shorts, or a beach cover-up are good choices—but it’s wise to double up on protection by applying sunscreen or keeping your child in the shade when possible.

• Get a hat. Hats that shade the face, scalp, ears, and neck offer the best protection. Baseball caps, although popular among kids, don’t protect their ears and neck. If your child chooses a cap, be sure to protect exposed areas with sunscreen.
• Wear sunglasses. Sunglasses protect your child’s eyes from UV rays, which can lead to cataracts later in life. Look for sunglasses that wrap around and block as close to 100% of both UVA and UVB rays as possible.

Sunscreen

• Apply early and often. The CDC recommends the use of sunscreen with at least SPF 15 and UVA and UVB protection every time your child goes outside. For the best protection, apply sunscreen generously 30 minutes before going outdoors. Since no sunscreen is truly waterproof, reapply again after they’ve come from the pool or other water sports activities. Don’t forget to protect ears, noses, lips, and the tops of feet. Keep in mind, sunscreen is not meant to allow your kids to spend more time in the sun than normal, it’s meant to reduce damage from UV radiation.  It doesn’t eliminate the threat.

• Protecting infants. Although babies younger than 6 months should be kept out of direct and indirect sunlight because of their increased risk of heat stroke, The American Academy of Pediatrics now advises that sunscreen use on babies less than 6 months old is not harmful on small areas of a baby’s skin, such as the face and back of the hands. Your baby’s best defense against sunburn is avoiding the sun and staying in the shade.

Precautions for Special Needs Children

• Medication precautions. Children on a variety of prescription medications are especially vulnerable to heat related illness.  Check your child’s prescriptions for warnings in relation to sun exposure. The risk for heat-related illness and death may increase among children using certain medications such as drugs: (1) which affect psychic function or behavior; (2) medications for movement disorders or seizures, because some medications can inhibit perspiration; and (3) diuretic medications or “water pills” that affect fluid balance in the body.

• Wheelchair users. For children who are non-ambulatory and stroller or wheelchair dependent, extra caution is needed. Seek shade for your wheelchair dependent child and take all other necessary precautions listed here.  Wheelchairs make heat even more unbearable. The cushions heat up and the plastic covers may cause excessive sweating, which can lead to dehydration and skin breakdown. Also be mindful that the metal portions of a wheelchair or stroller can become extremely hot in a very short period of time when exposed to direct sun. Protect your child from contact burns by covering any accessible arm rests and metal frame portions of the chair that your child may come into contact with. Wheelchair umbrellas are one way to provide added protection.
• Be prepared. If you plan on an extended outing, be sure to pack a cooler of ice and cold drinks. If you have a child who is tube fed and will need to be fed during the course of your outing, packing formula in a cooler with ice is a safe way to prevent spoilage. You’ll also want to keep small bottles of water in a cool place for any needed tube flushes, before or after feeds.

Conclusion

Avoiding sunburn and heat related illness is relatively straightforward if you follow these basic precautions. Being prepared, paying attention to weather conditions, and monitoring your child’s reactions to the heat and sun can help ensure your special needs child can enjoy outdoor activities this summer.

Additional Information

CDC Protecting your Child in the Sun

American Academy of Pediatrics, Baby Sunburn Protection

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

Family Vacations for Children with Cerebral Palsy

By John Lehman

Planning a vacation is an exciting but sometimes difficult task for any family, particularly families who have children with cerebral palsy. Special considerations must be taken into account well before the plane tickets are purchased. Fortunately, the task is not impossible. With a little bit of research, homework and proper planning, you can rest easy knowing your cerebral palsy child will have a fun and relaxing experience during your family’s vacation.
 

How to Prepare

There are many things you should keep in mind when deciding on a destination for your family vacation. Perhaps the most important step you can take when planning your vacation is to call your destination in advance and make sure they can accommodate your child. This includes potential hotels, restaurants or any attractions you are considering.

For example, will your hotel have adequate wheelchair accessibility? What about allergy risks? Are there hospitals nearby in the event of an emergency? All of these questions should be answered by calling your hotels or destinations ahead of time, well before you book your rooms. If the accommodations aren’t satisfactory, you’ll want to consider a different location.

Being in a new place may be disorienting for your child. You’ll want to be prepared in the event that your child panics or becomes upset. Some families combat this by trying to stay true to routines that their child is used to. If your child takes a nap in the afternoons, make sure you set aside time to allow him or her to do so. Of course, if your child is taking special medications, you’ll want to bring these along and have them take the medications at the appropriate time. Make sure you bring extra pills or dosages, just in case.
 

Where to Go

In today’s world, vacation destinations have proven to be much more accommodating towards special needs families than in decades past.

Some destinations are specifically designed with special needs families in mind. One such location is Morgan’s Wonderland, located in San Antonio, Texas. This amusement park’s mission is to provide an environment where all children can have fun together, regardless of their disability (or lack thereof). Activities include fishing, carousels, playing musical instruments, watching shows performed hourly and taking part in more traditional park activities, such as swing sets, sandboxes and slides. All of these activities are fully accessible for both children and adults with a variety of conditions.

Resort vacations aren’t out of the question, either. Some families with special needs have enjoyed visiting the National Ability Center in Park City, Utah. The center has many different active and outdoor activities for you and your family to enjoy year round, such as horseback riding, hiking, skiing, swimming and more. The center prides itself at offering these activities to children of all ages and ability levels, with the hopes of improving self-esteem, confidence and physical strength in the process.

Even famous resorts, such as Disney World, are renowned by special needs families for their excellent accommodations. Lodging at one of Disney’s many resorts are fully equipped for children or families with special needs, including text-to-speech devices, detachable showerheads and safety bars. Many of their biggest attractions have accommodations for special needs families as well.
 

Join Our Family

Sign up for our free e-newsletter for more blogs, articles and news about CP kids and their families.

Obama Administration Looks To Improve Transition Outcomes

By Michelle Diament

In an effort to identify better strategies to help young people with disabilities transition from school to work, a handful of federal agencies are seeking public input.

Starting Monday, the U.S. Departments of Labor, Education and Health and Human Services as well as the Social Security Administration are kicking off a two-week so-called online dialogue.

The agencies are asking policymakers, educators, service providers, families and youth with disabilities themselves to share their thoughts through a Web interface on how to improve transition outcomes.

Federal officials say they hope to learn about regulatory and legislative barriers that young people with disabilities are facing in accessing employment, education, Social Security and health and human services. Ultimately, the input received on the website may help shape future policies and practices, they said.

“We must ensure that our federal programs and resources support our nation’s youths and young adults with disabilities in reaching their dreams of economic empowerment and independence, and we need to hear from many people,” said Kathy Martinez, assistant secretary of labor for disability employment policy. “Speaking up online can help us identify barriers as well as opportunities that may exist at the federal level and also help us develop solutions.”

View original article.
 

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

Cerebral Palsy Doesn't Stop This Girl From Dancing!

Jenn Solomon sent us this video of her daughter, Rachel, participating in a dance at her summer camp!

"Here is a video of my little girl Rachel, 7 years old. She made a wish at her summer camp this summer (Double H in NY) that she would be able to be in a Hip Hop recital and be on stage like a regular kid. Well, here she is! And if I do say so myself she is better than a regular kid."

http://www.youtube.com/watch?v=eRmzMCrO8OI&list=LLo60IQwMxS6xminBbofb83g&feature=mh_lolz

Is Constraint Induced Therapy Right for Your Child?

You may have heard the term Constraint Induced Therapy (CIT) in a special-needs moms’ circle or during a therapy session with your child. Perhaps you’ve heard of its potential benefits in recent news stories. How much do you really know about CIT, and how do you determine if it’s right for your child?
 

Constraint Induced Therapy Defined

Pediatric Constraint Induced Movement Therapy or CIT is a type of treatment that teaches the brain to “rewire” itself following a brain injury. The focus is to restrict a child’s good extremity (arm, hand, leg, etc.) in order to force usage and improved function of the extremity needing rehabilitation. CIT often involves intensive training of the more-impaired extremity for a certain number of hours per day for a designated period of time. Children with a more severe level of spasticity or mobility impairment may require more daily hours of constraint and a longer period of intense therapy.

The CI Research Institute states that Constraint Induced Movement Therapy is the only rehabilitation technique shown to markedly change the organization of activity in the brain. Various studies have shown favorable outcomes suggesting that CIT may be a useful tool in the treatment of upper-extremity dysfunction in hemiplegic CP and other forms of CP.

Depending on the specific goals and level of achievement, it may take multiple sessions to realize the intended benefit.  Remember, you’re re-training the brain!!! Be patient.
 

Is Your Child a Candidate?

CIT is not appropriate for every child with cerebral palsy. Talk with your pediatrician, therapists and orthopaedic specialist to discuss whether or not your child could achieve positive results from Constraint Induced Movement Therapy.

Your child will need to be monitored throughout the course of treatment to check for any complications. Discuss with your therapist what “trouble signs” you need to look for, such as chafing, rash or skin breakdown with the restrained limb. Check fingers and toes to make sure there’s no impediment of blood flow as a result of a cast or restraining device that is too tight.
 

Goals

Your therapist should have a Care Plan mapped out, detailing the specifics of your child’s therapy plan, including hours per day, additional therapies being implemented and the overall duration of the CIT sessions. Request a copy of the Plan. You may want to create a chart or journal tracking and annotating your child’s daily sessions. Detail the length of time the constraint device is used and what skills your childed work on during the session.  Make notes of improvement and struggles.  This will give the therapist a better picture of your child’s progress or need for additional assistance.
 

Coping Mechanisms

What is CIT like for a child? Here’s an analogy. If you’re right-handed, imagine someone casting that hand, forcing you to do everything with your left! Keep in mind, you probably have normal abilities and range of motion in your left hand. What if you didn’t? What if you had no good function in your left hand and now your right hand is immobilized! While adults you have the maturity and psychological skills to cope with frustration, many children do not. Couple that with a child’s immaturity and possibly an inability to communicate and you can imagine the reaction your child may have to this type of therapy.

There will be tears! Ask your therapist how to help your child establish coping mechanisms and ways to help your child get past the frustration. Make it fun! Incorporate play therapy in your CIT sessions! You want these sessions to be productive and fun, not a screaming match between you and your child. For children with developmental disability and cognitive delay, discuss with the therapist the best ways to introduce this therapy to your child.

For children with the cognitive skills to understand, have your therapist help you explain to your child the concept and goals of the therapy. Explain the number of hours per day the constraint session will last and try to set a schedule that everyone can agree with. Be sure to consider whether or not any of the constraint hours will overlap hours your child is in school. You may want to start out small and work up. Also try to schedule hours when you can play an active roll in your child’s session. Pediatric therapy based on stringency is unrealistic. You need to be consistent but flexible. There may be days when your child just isn’t being cooperative, and you find yourself skipping an hour here or a day there. Discuss with your therapist some ideas that will give you flexibility for the unexpected.
 

Conclusion

As with any new therapy, consult your child’s doctors and care providers before embarking on a treatment plan. Do your research and weigh the benefits and risks before deciding whether or not Constraint Induced Therapy is right for your child.

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

Selective Dorsal Rhizotomy: The Right Treatment for Spastic CP?

By Lee Vander Loop
CP Family Network Editor
View similar stories.
The surgical procedure known as Selective Dorsal Rhizotomy (SDR) has gained considerable public attention within the cerebral palsy community. It is a neurosurgical procedure performed with the goal of improving motor function by decreasing spasticity in children with spastic cerebral palsy. Numerous news articles have published stories of children who have experienced life-altering benefits from SDR surgery, such as regaining the ability to walk after being confined to a wheelchair since birth.

What is Involved?

Spastic cerebral palsy, left untreated, can have a severe impact on a child’s development and can lead to serious musculoskeletal deformities. Spasticity is caused by abnormal nerve impulses traveling down the spinal cord. Selective Dorsal Rhizotomy aims to correct this through neurosurgery at the spinal cord level.
During an SDR procedure, surgeons identify and cut selected dorsal nerve roots in the spinal cord that are responsible for abnormal movement in the lower extremities. These nerve roots are identified using electrical stimulation. Identifying the correct nerve roots is vital. If nerve roots coming into the spinal cord from the skin, bladder or bowel are cut, then the patient may develop numbness or bladder or bowel incontinence.
Just as every child’s level and severity of spasticity is unique, every child’s surgery is also unique. Some children may only need 10% of the designated nerves cut where another may require a higher percentage for positive results.

Eligibility

There are strict criteria used to determine a child’s eligibility for Selective Dorsal Rhizotomy. A multi-team assessment is made which typically includes a physiotherapist, a pediatrician and surgeons. The procedure is usually recommended for young children with CP spastic diplegia without dyskinesia or ataxia. Additionally, children who are without significant cognitive disability and those with a walking capacity within reach are considered candidates. This is an extremely complex surgery, and like all surgeries, presents risks. Parents need to be made aware of all the factors involved in this potentially life-altering procedure.

Benefits of SDR

• Reduces or eliminates the need for long term pharmacological intervention, such as muscle relaxants and antispasmodic medications.
• May offer immediate reduction in muscle tone in adductors, hamstrings and dorsiflexors with no recurrence of spasticity.
• Reduced need for other orthopedic surgeries to correct joint contractures.

Risks of SDR

• The procedure is irreversible.
• Post operative weakness and loss of some motor ability have been noted.  Intense physical therapy is required to regain strength and mobility.
• May lead to deterioration in walking ability or bladder function, or later complications including spinal deformity.
• Commonly reported post-op side effect includes abnormal sensitivity of the skin on the feet and legs lasting up to 6 weeks.
• Prolonged physical therapy (specifically physiotherapy) and aftercare is required.
• Additional surgery may be required.
• The full benefits of SDR may not be realized until up to a year after the surgery.
• Possibility of excessive weight gain. (I found this weight gain side effect to be true with my own daughter. As a result of significantly reducing her spasticity with ITB therapy (Intrathecal Baclofen Pump) she gained 40 lbs in the first year after the pump placement!)

Is SDR Right for Your Child?

If you believe your child may be a candidate for SDR surgery, speak with your child’s pediatrician, therapists, orthopedic specialist and neurologist.  Be prepared for the long haul.  Gather all the information you can.  Make lists of every question that comes to mind.
As with any major surgery, there are risks and threat of complication. Do the research to ask the right questions!As you research, write down questions and concerns that you encounter in your reviews. Think of all the details of pre-op, the initial surgery, post-op, long term rehab, therapies, pain management, educational needs and adaptations, mobility, assistive technology needs post-op, and other issues of importance that may come to mind. Remember the only “dumb question” is the one you don’t ask!
Further Reading:
Long-term Outcomes Five Years After Selective Dorsal Rhizotomy
Selective Dorsal Rhizotomy
Growth in Children with Cerebral Palsy during Five Years After Selective Dorsal Rhizotomy: A Practice-based Study
About Selective Dorsal Rhizotomy

Join Our Family

Sign up for our free e-newsletter for more blogs, articles and news about CP kids and their families.

Learning to Embrace Life’s Little Moments

By Julie Ufema
View similar stories.
The holidays brought me an unimaginable gift this year. One that I never could have anticipated.
My Mom drove in from Maine and was able to join me as we volunteered to be ‘room mothers’ for my son Dane’s Christmas party. She was thrilled. I, admittedly, was apprehensive to say the least.
Earlier this year I was able to spend a day in the life of a kindergartner when my son’s home health aide called off sick, and although an invaluable experience, by the end of the day I was exhausted and happy to head home. But this would only take a couple of hours, and was a party to boot! I love a good party. How tough could it be?

Let the Party Begin

We walked into the classroom and all heads turned in our direction. Everyone now knew that I was Dane’s mom, an avid, amateur photographer and always willing to do something slightly unorthodox to meet my son’s special needs – two things that five-year-olds find highly entertaining.
The ‘head’ room mom announced that we would be making a Christmas ornament, reading a story and then playing some games. That seemed easy enough.
My mom and I set about opening up Popsicle sticks, squirting glue and sticking googly eyes where they belonged. Dane’s snowman looked like it was melting, but he’s never been one to follow the rules and I have never been one to make him.
The story was delightfully uneventful. The children all sat ‘crisscross-applesauce’ and listened with bated breath to find out if ‘Grumpy Santa’ would snap out of his funk and finish delivering his toys to all the good little girls and boys.

Game Time

Next up – the games! Dane squealed with delight and clapped his hands. A moment of terror swept over me. What games? How hard could they be? Dane has cerebral palsy, limited use of his hands and is in a wheelchair. It just hadn’t dawned on me that these ‘games’ might fall slightly outside of his wheelhouse. I so often forget that Dane is any different than anyone else that reality sometimes sneaks up on me.
And boy was this one a doozy! We were to push a Styrofoam ‘snowball’ the length of the classroom (and back!), with a wooden spoon, in an all-out, head to head relay race. When it came time to split into teams, I tried inconspicuously to hang back with Dane. Not a chance. The excited students pleaded with us, “Come on Dane!” “Dane, come be on our team!” “No, he’s closer to our side.  He should be on our team.”
As it had time and time before, my heart sank. I thought quickly, grabbed a piece of paper, rolled it up into a cone and handed it to Dane. “Here,” I said confidently.“You can be the director!”
My mother and the aides looked relieved. That should work for sure! Dane had definitely inherited my bossy pants gene and this should totally satiate his need to participate.
No dice. Out came the lip.
Before the first tear could fall I hurriedly unbuckled him from his wheelchair, mustered up all the strength I could, grabbed my 4-foot, 50 lb. baby boy and carried him over to the end of the line.

Part of the Team

Our turn came. I grabbed the wooden spoon, swooped down towards the ‘snowball’ and gave it all we had. I managed to give the ball one pretty decent whack, and with a couple more awkward and labored dips to the floor, we were just able to stumble across the finish line, dead last, to a raucous round of applause.
As I looked around the room I saw laughter, empathy and maybe just a little disbelief. I looked down at Dane and he grinned ear to ear. Panting, I trudged back over to my mom who quickly pushed Dane’s chair into position. She was smiling too.
She leaned into me, “We could see your bum.” She giggled.
“Won’t be the last time!” I laughed.
And it won’t be. I decided that from that day forward, I would attend all of Dane’s parties, not to protect him from disappointment, but to celebrate the moments that pass too quickly, often unseen by the adult eye. And if I have to show a little bum in the process, so be it. I’d rather teach my kids that to participate and risk looking foolish is always better than not participating at all.

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows. Find her at www.julieufema.com and www.facebook.com/JulieUfemaWriter.

Join Our Family

Sign up for our free e-newsletter for more blogs, articles, and news about CP kids and their families.

Urge Congress to Fund Cerebral Palsy Research

Cerebral palsy affects more children than muscular dystrophy, multiple sclerosis, cystic fibrosis or childhood leukemia. But CP receives only a fraction of the government research funding these other disorders receive. I wish I knew why. I only know it isn’t right.

Not that these organizations deserve any less research support. I just believe cerebral palsy should warrant more attention. In the U.S., 1 in every 303 eight-year-olds has cerebral palsy. The odds are 1 in every 270 among African-American children. Yet, the cause of 80% of CP is still unknown.

I work with families of children with cerebral palsy on a regular basis. I know what kind of challenges they face, and what it costs to provide children with the kinds of therapies and services they will need the rest of their lives. I present these numbers in courts and around settlement tables. I am well aware that science has not found a way to prevent most cerebral palsy, or to cure it.

Without more research funding, it is unlikely this will occur anytime soon, which is a travesty. Dedicated research funding is practically nonexistent, according to the Academy for Cerebral Palsy and Developmental Medicine. The Centers for Disease Control and Prevention (CDC) has no specific funding for CP, and funds dedicated for CP by the National Institutes of Health (NIH) (only $22million for this year) is not for innovative, curative research, the academy notes.

Today is National Cerebral Palsy Awareness Day. Do your part to urge Congress to dedicate more funding to preventing, curing and developing effective therapies for cerebral palsy. Contact your elected officials. The 800,000 Americans who are living with CP today are counting on you.

For more information about the causes of cerebral palsy, read my blog “Your Child’s Cerebral Palsy: Preventable Mistake or Not?“

When Raising a Special Needs Child, Keep it Fun!

By Denise D. Aggen

View similar stories.

When someone becomes a new parent, having a healthy and happy child is the first thing on their mind. Being a parent of a child with cerebral palsy can sometimes make a parent question themselves or their abilities to raise someone with special needs. I know when I became a parent at the age of 21, I thought maybe I had done something wrong in my life to be given a child with cerebral palsy. It was not until a stranger told me that I was not being punished, but I was actually chosen to be this special child’s parent because I was also the special one. I was going to be the rock for this child and help them become the best that they could be. Looking at my baby at that time, I saw no disabilities; I only saw her love for me.

Appreciate the Little Things in Life

My daughter has taught me to appreciate the little things in life. Many parents take for granted the different skills that a child learns as they develop, such as putting on their socks, or brushing their teeth. In my house, if my daughter learns a new thing, we celebrate with a happy dance with a lot of hooting and hollering. It takes a lot for someone who has cerebral palsy, depending on the case, to learn a new task or skill.

Currently, I am trying to get my daughter to stay in her own bed all night long. Now mind you, she is very cute coming into my room in the middle of the night with her little doll in her arm and her pillow in the other saying, “Mommy, I had a bad dream. Can I sleep with you?” That is just so precious. I need to be strong and put her back into her room and be stern with her, because a good habit is much easier for her to learn than a bad habit is to break.

Make It Fun

When trying to teach your child with cerebral palsy a new skill or task, make it fun for them. Create a calendar with a box full of stickers that they can pick from when they reach their goals. Go shopping together to pick out the calendar or the materials to make a calendar. Let them pick out the different stickers that they will be using to put on their special calendar. This will be a great treat for them and this will help them become even more excited to reach their goals.

In our house, my daughter can put a sticker on the calendar when she goes potty on the toilet, when she brushes her teeth and when she stays in her own bed all night. After so many stickers, she can choose from a list of prizes, such as going shopping for a new doll or new clothes. Everyone likes to have something to look forward to, and it can be exciting and fun for everyone in the family. Make it fun and enjoy the little things in life.

About the Author

Denise D. Aggen is the proud mother of two and an avid blogger. She writes both a personal blog and a blog called A Parent’s Precious Moments, which chronicles her life as the parent of a child with cerebral palsy. 

Join Our Family

Sign up for our free e-newsletter for more blogs, articles and news about CP kids and their families.

Navigating the World in a Wheelchair

By Crystal McClure

View similar stories.

One of the greatest challenges an individual with a disability faces is the issue of accessibility. Even today, there are still many places that are not fully accessible to those with disabilities; specifically those who use wheelchairs. Wheelchair-friendly establishments continue to be the exception rather than the rule.

Accessibility in the Home

As a child, I was often unaware of how often my wheelchair made it difficult for me to visit certain places. My parents did everything they could to ensure that my wheelchair did not cause me to be left out of many life experiences. They made modifications where necessary so places and things were accessible. My dad built ramps into our house so I could enter and exit the house on my own. When I reached my teen years, he made sure the bathroom was modified so I could do things on my own. Each time my grandfather built a new home for himself and my grandmother, he always made sure that I could get through all doors and hallways inside the house. I am very grateful to my family for always keeping an eye out for accessibility issues, whether in the home or out in public.

When I became an adult and had the privilege of purchasing my own home, only minor modifications had to be made. A ramp was installed to allow me to enter and exit. My dad installed a new high rise toilet so I would be able to use the bathroom without the need for a toilet chair over the commode at all times. This has made living on my own so much easier.

Challenges of Public Restrooms

Often, one of the biggest frustrations for those who use wheelchairs is public restrooms. During my childhood, my mother had to lift me on and off the toilet. Most times we would use a regular stall, which meant the door would not shut because of my wheelchair. This made me very nervous and I would hold it or not be able to use the restroom even though I really needed to go.

Many times, public restrooms are not big enough to accommodate larger-than-average wheelchairs, and in some cases, are not even designed to accommodate a regular size chair. This has been my experience in restaurants and hotels. Just as when I was a child, I have been in restaurants where my wheelchair barely fit into the stall and I could not close the door. When faced with this obstacle, I request to speak to the manager and am often told the restroom meets the required code.

While I understand public places meet code by having the handrails and a wider stall, that does not always mean that it is accessible for someone in a wheelchair. In my personal experience, the handrails are of no use to me as they are up too high and too far away from the toilet. When I do try to use them, I end up pulling my wheelchair under them instead of being able to pivot my body as needed. This has also caused me to jam my knees under a toilet paper holder.

Another issue I have with restrooms is my wheelchair sliding across the floor when I transfer. I have fallen many times because of this. It is very difficult to transfer when the toilet is standard height. Hotel showers are also not wheelchair accessible in many cases. This means that unless the person has someone with them who can lift them safely in and out of the bathtub, they have to sponge bathe and wash their hair in the sink.

Simple Steps to Improve Wheelchair Accessibility

There are some things that can be done to help improve accessibility for wheelchairs in public restrooms. First, persons building the restroom should make sure the stall is big enough to accommodate any size wheelchair and even scooters. Next, place rubber non-skid mats in front of the toilets. This will help secure the wheelchair into place so that it does not roll out or away from the user when he or she is transferring. Finally, all toilets in handicap stalls should be higher than a standard toilet. This will also help with the ease of transferring and reduce the chance that a handicapped person will fall.

Often times, the main door to the restroom is heavy and difficult to open in a wheelchair. I have been in some restrooms where the main door had a push button for opening. This would benefit accessibility for the disabled in all restrooms. If these steps were taken to ensure accessibility for those in wheelchairs, more issues such as these would likely be noticed and addressed.

Speak Up

As the caregiver of a child with a disability, you have the right to speak up and bring accessibility issues to the attention of management. Do not be afraid to be that voice your child needs you to be! As they say, it only takes one person speaking up to make a change. So, let’s speak up and see a change made for the benefit of the wheelchair community.

Have you or your child had frustrating experiences with wheelchair accessibility? Do you have any creative solutions or suggestions? Let us know in the comments!

Join Our Family

Sign up for our free e-newsletter for more blogs, articles and news about CP kids and their families.