4/28/12
4/26/12
Sports and Recreation: Utah
National Ability Center
It is our philosophy at the National Ability Center to offer a broad range of sports programs and outdoor activities for individuals with both physical and developmental disabilities.
It is our philosophy at the National Ability Center to offer a broad range of sports programs and outdoor activities for individuals with both physical and developmental disabilities.
Camps: Utah
The National Ability Center
The National Ability Center offers a variety of camps year round for people of all different abilities. Our camps provide a plethora of varied activities which challenge campers' abilities and focus on developing self esteem and building friendships.
The National Ability Center offers a variety of camps year round for people of all different abilities. Our camps provide a plethora of varied activities which challenge campers' abilities and focus on developing self esteem and building friendships.
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4/25/12
4/24/12
The Blue Rose
Having four visiting family members, the wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent, and Clorox. So off I went.
I scurried around the store, gathered up my goodies, and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."
It was obvious now, he was mentally challenged, and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?" "My name is Denny and I'm shopping with my mother," he responded proudly. "Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve." "Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?" "How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.. "You're fifteen-years-old Denny; now be a good boy and let the man pass by."
I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles, and school. I watched his brown eyes dance with excitement because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.
Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him. I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit.
I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.
She was silent for a second, then with a tear in her eye she asked, "Who are you?" Without thinking I said, "Oh, I'm probably just a dandelion but I sure love living in God's garden." She reached out, squeezed my hand, and said, "God bless you!" and then I had tears in my eyes.
May I suggest that the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, just think how this mother or father have felt so many times...how so many folks have rejected their child. This could be your child, grandchild, niece, or nephew. What a difference a moment can mean to that person or their family. From an old dandelion!
Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God. "People will forget what you said, People will forget what you did, but people will never forget how you made them feel."
4/12/12
Once Your Child Turns 15, Begin to Look into Transition Services
Transition Services involve preparing your child for a life of maximum independence once they become an adult.
Transition Services are required by law to be provided by the school system to eligible students at age 16 and can continue through age 21 for qualified individuals.
Government-funded Transition Services can also be provided through a Center for Independent Living such as the following:
Access to Independence is an independent living center, a nonresidential, cross-disability, non-profit corporations that provide services to people with disabilities to help maximize their independence and fully integrate into their communities. Access to Independence is one of 391 independent living centers across the country and one of 29 serving Californians. Like all independent living centers Access to Independence offers required federal and state programs and services to people of all disability types and ages at no charge.
4/10/12
Home Accessability
Handi Ramp Grants
The Handi-Ramp Foundation assists the disabled and their families in choosing a home suited to their needs and customizing it provide those in wheelchairs with easy access in and and around their houses.
For more home accessibility resources, check out the Home Accessibility section of this website.
The Handi-Ramp Foundation assists the disabled and their families in choosing a home suited to their needs and customizing it provide those in wheelchairs with easy access in and and around their houses.
For more home accessibility resources, check out the Home Accessibility section of this website.
Sports and Recreation: Colorado
Challenge Aspen
Challenge Aspen is dedicated to impacting lives by presenting meaningful recreational, educational and cultural experiences to individuals faced with cognitive or physical challenges.
Telluride Adaptive Sports Program
TASP’s main activities include the adaptive ski program operating daily during the winter at the Telluride Ski Area and a mix of focused summer sports programs. We also conduct clinics and special events including the Expand Your Horizons! Ski Camp-for advanced skiers with disabilities, cycling clinics, Nordic and snowshoe clinics and more.
Challenge Aspen is dedicated to impacting lives by presenting meaningful recreational, educational and cultural experiences to individuals faced with cognitive or physical challenges.
Telluride Adaptive Sports Program
TASP’s main activities include the adaptive ski program operating daily during the winter at the Telluride Ski Area and a mix of focused summer sports programs. We also conduct clinics and special events including the Expand Your Horizons! Ski Camp-for advanced skiers with disabilities, cycling clinics, Nordic and snowshoe clinics and more.
4/7/12
Camps: California
Ability First Youth Sports Camp
Since 1985 Ability First Youth Sports Camp has provided sports and recreation opportunities for youth with physical disabilities. Ability First was founded by Eric Snedeker and Bill Bowness, masters students in the Therapeutic Recreation department at California State University, Chico. The camp runs for one week every summer on the campus of California State University, Chico and has served well over 700 youth since its inception.
Camp Paivika
Kids, teens and adults with mild to severe physical and developmental disabilities come to Camp Paivika in the summer and winter for horseback riding, swimming, adaptive sports, campfires and cookouts, arts and crafts, performing arts and other enjoyable, enriched activities. With a sense of freedom inspired by time spent outdoors in natural surroundings, campers learn, develop new interests and confidence through guided play, social skills building and exploration.
Each August SDASF offers a unique opportunity for children, ages 4-18, with a physical disability, to attend a five-day adaptive sports camp. Sports offered include basketball, hip hop dance, tennis, archery, rugby, soccer, physical conditioning and more.
Since 1985 Ability First Youth Sports Camp has provided sports and recreation opportunities for youth with physical disabilities. Ability First was founded by Eric Snedeker and Bill Bowness, masters students in the Therapeutic Recreation department at California State University, Chico. The camp runs for one week every summer on the campus of California State University, Chico and has served well over 700 youth since its inception.
Camp Paivika
Kids, teens and adults with mild to severe physical and developmental disabilities come to Camp Paivika in the summer and winter for horseback riding, swimming, adaptive sports, campfires and cookouts, arts and crafts, performing arts and other enjoyable, enriched activities. With a sense of freedom inspired by time spent outdoors in natural surroundings, campers learn, develop new interests and confidence through guided play, social skills building and exploration.
Apply for Respite Care
Respite Care is designed to give care-givers a break. The idea is that the government pays someone to come to your home and watch your child for a few hours so that you can get out of the house and do whatever you need to do.
In some states, such as California, you can have a family member or friend as your respite care provider. Your friend just needs to register with a qualified Respite Care provider. The state pays the provider, the provider pays your friend / relative and you get a break. Everybody wins.
Respite Care is coordinated through your Early Intervention Case worker.
Parent's Note:
When our Annie was an infant, we qualified for 8 hours of respite care every 3 months. This seemed totally pointless so we never took advantage of it. Now that we have no-cost Medi-Cal we qualify for 12 hours a month which makes more sense. For us, that's one afternoon a week where I can do yard work or run errands or go to work.
Further Reading:
4/6/12
4/5/12
Camps: Canada: Alberta
Camp Freedom
Are you a teen with Spina Bifida? Do you like to have fun and hang out without your parents or siblings? Then you don’t want to miss Camp Freedom this summer! Held at the fully accessible Camp HeHoHa on Lake Isle, one hour west of Edmonton. Just for 12 – 18 year olds with Spina Bifida
Are you a teen with Spina Bifida? Do you like to have fun and hang out without your parents or siblings? Then you don’t want to miss Camp Freedom this summer! Held at the fully accessible Camp HeHoHa on Lake Isle, one hour west of Edmonton. Just for 12 – 18 year olds with Spina Bifida
Bald Barbie
Dislocated Hips
It is not uncommon for a child with SB to be born with one or two dislocated hips. Oftentimes this is caused by the hip sockets not fully forming which allows the ball of the femur to "pop" in and out of the socket.
While it sounds counter intuitive, standard medical practice is to leave the hip(s) dislocated rather than correct it with surgery. Anytime surgery is done, scar tissue is left behind. When you develop scar tissue in an area of the body that is involved in dynamic movement (such as the hip), scar tissue reduces range of motion and increases discomfort.
Unless the dislocated hip(s) is interfering with with the child's development and abilities, it is better to leave it as is.
Parents Note:
Our Annie was born with two dislocated hips. It was a real shock to us when the doctors did not want to correct them but now we fully understand. Annie's hips being dislocated does not cause her any discomfort and they don't hold her back in any way. Of course, she does get her legs in some pretty wild positions from time to time! Here she is at 25 months:
But is has just become one the unique and endearing things we love about her.
Further Reading:
4/4/12
Urinary Tract Infections (UTI) Causes and Cures
UTI's can be divided into two categories: Lower (bladder) and Upper (kidneys). Upper infections usually stem from a previous lower infection. Children who are following a regime of Intermittent Catheterization are more likely to develop UTIs. Females are also more likely than males to develop UTIs.
Causes:
Most UTIs (80-85%) are caused by the bacteria E. coli which is present in fecal matter.
Cures:
Most UTIs can be treated by a course of antibiotics.
Symptoms (from Wikipedia):
The most common symptoms are burning with urination and having to urinate frequently. Some pain above the pubic bone or in the lower back may be present. People experiencing an upper urinary tract infection may experience fever, nausea and vomiting. Rarely the urine may appear bloody or contain pus in the urine.
In young children, the only symptom of a urinary tract infection (UTI) may be a fever. Because of the lack of more obvious symptoms, when females under the age of two or uncircumcised males less than a year exhibit a fever, a culture of the urine is recommended by many medical associations. Infants may feed poorly, vomit, sleep more, or show signs of jaundice.
In young children, the only symptom of a urinary tract infection (UTI) may be a fever. Because of the lack of more obvious symptoms, when females under the age of two or uncircumcised males less than a year exhibit a fever, a culture of the urine is recommended by many medical associations. Infants may feed poorly, vomit, sleep more, or show signs of jaundice.
Prevention:
The best thing you can do for an infant or toddler to prevent UTIs (particularly with females) is to make sure their diaper stays clean. The longer fecal matter stays in their diaper, the higher the risk for UTI's
If your child is Intermittently Catheterized, it is very important to use best practices to ensure cleanliness so that the insertion of the catheter does not introduce E. coli bacteria into the unrinary tract.
Further Reading:
4/3/12
Can Children with SB be Potty Trained?
The short answer is , "Yes. Some can be potty trained in a typical fashion, many will have to be potty trained with some adaptations."
At its core, the definition of "potty trained" is not going when you shouldn't and going when you should. When a child has diminished sensation and/or control over their bladder and bowels this requires some unique approaches that can result in some unique advantages.
BLADDER:
Not Going When You Shouldn't:
Many children with SB do not have the ability to "hold it" and so medication such as Oxybutynin (ex; Ditropan) is prescribed. Essentially what Oxybutynin does is relax the bladder and allow it to fill without emptying.
Going When You Should:
Since a bladder on Oxybutynin is not emptying on its own, a regular habit of intermittent catheterization is prescribed to empty the bladder at regular intervals (3-4 hours).
This combination of medication and catheterization allows the child to remain dry. Potty training essentially comes down to teaching a child how to catheterize themselves. This usually occurs sometime between age four and early grade school years.
BOWEL:
Not Going When You Shouldn't:
Because most children with SB have slow bowels, they usually struggle with constipation. This is often managed through a combination of diet and the use of Polyethlene Glycol (such as Miralax) as a supplement.
Going When You Should:
The bowels can be emptied in a number of ways including various enemas, digital stimulation (in the case of infants and toddlers) or high doses of Polyethlene Glycol which takes effect over a period hours or days.
One of the most popular ways to manage bowels is through a Malone Antegrade Continence Enema or "MACE" procedure. The MACE procedure creates a hole through the abdominal wall which connects to the appendix. A hole is left in the abdominal skin which can be covered up by a small band aid. When it is time to flush the bowels, a small tube is inserted through the hole and saline solution is administered. This works exactly like an enema except that the fluid is coming from the top-down and flushing the bowels instead of from the bottom-up which is less effective.
4/2/12
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