12/20/12
12/13/12
10/16/12
10/15/12
Sports and Recreation: Ohio
Dancing Wheels
If dance is an expression of the human spirit, then it is best expressed by people of all abilities. That is the fundamental belief behind the Dancing Wheels Company & School. Considered one of the premier arts and disabilities organizations in the U.S., Dancing Wheels is a professional, physically integrated dance company uniting the talents of dancers both with and without disabilities.
If dance is an expression of the human spirit, then it is best expressed by people of all abilities. That is the fundamental belief behind the Dancing Wheels Company & School. Considered one of the premier arts and disabilities organizations in the U.S., Dancing Wheels is a professional, physically integrated dance company uniting the talents of dancers both with and without disabilities.
9/24/12
9/19/12
9/12/12
9/10/12
9/5/12
8/25/12
2012 Para-Olympics
"You're STRONG. You're FAST. You're BEAUTIFUL! Nothing can stop you. You are made of metal!
http://youtu.be/y5whWXxGHUA
http://youtu.be/y5whWXxGHUA
8/21/12
8/13/12
8/2/12
Natalia Partyka
What's impressive about Natalia Partyka is not that she qualified for the Olympics for the second time running -- scores of athletes have returned for the 2012 London Summer Olympics -- but that she is able to compete with her able-bodied peers despite her handicap. Partyka was born without a right hand and forearm.
http://youtu.be/TttqfX-v4u4
7/26/12
7/25/12
7/13/12
7/11/12
7/7/12
6/29/12
6/25/12
6/22/12
6/21/12
All You Were Intended to Be
Things don't go wrong and break your heart so you can become bitter.
They happen to break you down and build you up so you can be all that you were intended to be.
- Charles "Tremendous" Jones
They happen to break you down and build you up so you can be all that you were intended to be.
- Charles "Tremendous" Jones
6/20/12
6/19/12
6/4/12
Jim Hughes
http://www.cbsnews.com/8301-18563_162-57445821/n.y-blind-high-school-teacher-sees-students-like-no-other-educator/?tag=showDoorLeadStoriesAreaMain;ENLeadHero
6/2/12
In Rat Experiment, New Hope for Spine Injuries
Rats with a spinal cord injury that left their hind legs completely paralyzed learned to walk again on their own after an intensive training course that included electrical stimulation of the brain and the spine, scientists reported on Thursday.
5/21/12
5/10/12
Sports and Recreation: Central California
Axis Dance Company
AXIS Dance Company has become one of the world’s most acclaimed and innovative ensembles of performers with and without disabilities. Founded in 1987, they have paved the way for a powerful contemporary dance form called physically integrated dance.
Project Surf Camp
Project Surf Camp uses surfing, the beach, and other ocean activities as an educational modality to build self-confidence, self-esteem, and self-efficacy in individuals with special needs. We further provide opportunities to build social skills, improve physical fitness, develop healthy outlets for stress reduction, and foster independence.
Shared Adventures
Founded on the belief that recreation, fun, challenge and access to the outdoors are an essential part of a healthy and fulfilling life, Shared Adventures is a non-profit organization dedicated to improving the quality of life of people living with disabilities.
AXIS Dance Company has become one of the world’s most acclaimed and innovative ensembles of performers with and without disabilities. Founded in 1987, they have paved the way for a powerful contemporary dance form called physically integrated dance.
Project Surf Camp
Project Surf Camp uses surfing, the beach, and other ocean activities as an educational modality to build self-confidence, self-esteem, and self-efficacy in individuals with special needs. We further provide opportunities to build social skills, improve physical fitness, develop healthy outlets for stress reduction, and foster independence.
Shared Adventures
Founded on the belief that recreation, fun, challenge and access to the outdoors are an essential part of a healthy and fulfilling life, Shared Adventures is a non-profit organization dedicated to improving the quality of life of people living with disabilities.
5/9/12
Stronger
The patients and staff on the hemoncology floor of Seattle Children’s Hospital lip-sync “Stronger” by Kelly Clarkson for inspiration.
http://youtu.be/ihGCj5mfCk8
http://youtu.be/ihGCj5mfCk8
5/5/12
5/3/12
Hellen Keller
"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us."
- Hellen Keller
5/1/12
Camps: Kentucky
The Center for Courageous Kids
A world class medical camping facility in the rolling hills of Scottsville, Kentucky providing a cost-free, safe, and fun camping experience for seriously ill and disabled children and their families.
A world class medical camping facility in the rolling hills of Scottsville, Kentucky providing a cost-free, safe, and fun camping experience for seriously ill and disabled children and their families.
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
3/31/12
Don't Be Afraid to Get Second Opinions
SB is a complex condition and while each of your doctors will address their specific discipline (Orthopedics, Neurology etc) you, as a parent, will juggle them all. It was a surprise to me when I finally came to the realization that I am in charge of what is best for my daughter - not the doctors - they work for me.
If your aren't feeling good about what a doctor is telling you, ask questions - challenge them even. Doctors make a decent living - they should be able to explain and defend their recommendations to a parent in a way that makes sense. If you are not satisfied with the information you are receiving, get a second opinion and don't apologize for it.
No one is going to ultimately look out for the best interests of your child better than you. Don't be afraid to get second opinions.
Parents Note:
Here are some examples of when we have sought out second opinions:
Perinatologist: The perinatologist we were initially referred to creeped us out. We did not like the way she approached us and got the clear sense that she was actually pushing her values on us - values that we did not share. We asked everyone we knew for recommendations and found a WONDERFUL medical group that ultimately delivered our daughter.
Urologist: The urologist we were initially sent to rubbed me the wrong way. She seemed "put out" by my gentle (really) questions and at one point snapped at me during an exam. We asked our pediatrician for a new referral and ended up with a Urologist whom we greatly admired.
Orthopedics: We really like our orthopedic team however we want to explore all options when it comes to treating Annie's spine. Our orthos seem to have "their way" of doing things so we have made an appointment to take Annie to Shriners in LA for a second opinion. Again, we have no problem with our ortho team but for the sake of our own consciences we feel we need to get a friendly second opinion.
The Thorn
by Martha Snell Nicholson
I stood a mendicant of God before His royal throne
And begged him for one priceless gift, which I could call my own.
I took the gift from out His hand, but as I would depart
I cried, “But Lord this is a thorn and it has pierced my heart.
This is a strange, a hurtful gift, which Thou hast given me.”
He said, “My child, I give good gifts and gave My best to thee.”
I took it home and though at first the cruel thorn hurt sore,
As long years passed I learned at last to love it more and more.
I learned He never gives a thorn without this added grace,
He takes the thorn to pin aside the veil which hides His face.
Special Needs Marriages
It is no secret that marriages involving a special needs child are under an additional amount of stress but, just like the way pressure creates diamonds out of coal, that added stress can make a marriage tighter, strong and more resilient going into the future. If marriage were a sport, then special needs marriages are performing at the Olympic level. The challenges are hard but the glory is immense.
With all that in mind, here are a few articles (and one or two of my own) that have been an encouragement to me. I hope they are an encouragement to you as well:
Thoughts on Life
While not marriage-related precisely, here are some of the ways in which being a special-needs dad has impacted me:
3/29/12
What is a Latex Allergy?
Latex products are made with natural rubber. Hospitals used to rely heavily on latex products (such as rubber gloves) until they began seeing an increased allergic reaction to the use of latex with patients. Allergic reactions to latex come not only from contact with the latex product but also from inhalation of the latex powder that is usually present such as inside a rubber balloon.
Patients who spent the most time in hospitals and had the greatest exposure to latex seemed to develop the most severe reactions. Since children with SB spent a significant amount of time in hospitals by comparison to the typical population, the incidence of latex allergy in the SB population was high. For that reason, all children born with SB are presumed to have a latex allergy.
Most hospitals no longer use latex products and so there is a decrease in the number of SB children reporting allergic reactions to latex. While most hospitals are now safe, latex balloons are still prevalent and many dentist offices still use latex gloves. In addition, certain fruits (such as avocados) contain natural latex.
Further Reading:
How Does SB Effect Cognitive Abilities?
People with Spina Bifida run the full range of typical cognitive abilities . Some are straight "A" valedictorians and some are not. Special attention does need to be given to early development and special education if needed.
Children outside the womb develop abilities very similar to how their bodies develop inside the womb. First comes trunk strength and control, then arm, leg (crawling and walking) and head motor development followed by hand, feet, mouth and eye motor development.
Children have a hard time just skipping over these milestones. For instance, if a child does not have the trunk strength and control to sit up independently and they are constantly gripping their high chair for support, they are going to have a hard time developing the fine motor skills involved in feeding themselves (they don't have a free hand!).
Speech and sensory issues are also common in children with SB but with attentive parents and proper therapeutic and educational services many delays can be minimized if not overcome completely.
Recommended Reading
A Very Special Critter
In this wise and funny picture-book adventure, a special student joins Little Critter's class at school. The new student uses a wheelchair, and Little Critter is worried. Will his classmate be very different? Will the class know how to act around him? It's an honest, realistic look at ways kids deal successfully with the unknown -- mixed with a big dollop of Mercer Mayer humor for good measure.
For Speech and Language Issues
Special Education
Travel: Virginia
Clemyjontri Park
Children with and without disabilities can play side-by-side sharing the fun, excitement and thrills in a playground unlike any other in Fairfax County.
Children with and without disabilities can play side-by-side sharing the fun, excitement and thrills in a playground unlike any other in Fairfax County.
Wheelchair Accessory List
For More Wheelchair Accessories, browse the Wheelchair Accessories topic
Cup holders and more!
Accessories for Snow
CoolHubcaps.com
Spoke guards for wheels.
Frog Legs
Frog Legs is the world-wide expert in wheelchair suspension. with over 14 years experience we manufacture the original and best wheelchair shock abosrbing caster forks avalible.
Volcanic Wheels
Frog Legs is the world-wide expert in wheelchair suspension. with over 14 years experience we manufacture the original and best wheelchair shock abosrbing caster forks avalible.
Volcanic Wheels
Light-up front casters
Robotic Wheelchair that Follows You
Latest Technology List
GTcompello Wheelchair
The GTcompello wheelchair is a human powered tilting trike which allows paraplegics and quadriplegics with adequate hand and arm function to access road terrain for activities such as touring and racing.
No Limits Trike
The No Limits Trike is an add on to a manual wheelchair.
The GTcompello wheelchair is a human powered tilting trike which allows paraplegics and quadriplegics with adequate hand and arm function to access road terrain for activities such as touring and racing.
No Limits Trike
The No Limits Trike is an add on to a manual wheelchair.
Therapies
There are many types of therapeutic approaches to dealing with developmental delays and/or deficits. Here are some of the therapies commonly utilized by people with SB:
Physical Therapy deals with gross motor development. Some examples would include trunk strength, crawling, walking movement of arms and range of motion.
Occupational Therapy deals with fine motor skills. Some examples would include self feeding, eating, drinking, movement of the head, grasping with the hands, and writing.
Speech Therapy deals with not only expressive speech (speaking) but receptive speech as well (hearing and understanding).
Hippo Therapy uses horseback riding to address Physical Therapy, Occupational Therapy and Speech Therapy all at the same time.
Sensory Integration Therapy deals with sight, sound, touch, taste and smell. Some of examples of Sensory Integration Therapy would be exposing the child to different tastes, textures, sights, sounds and smells.
National Expos and Conferences
Abilities Expo
For the last 30 years, Abilities Expo has been the one show dedicated to educating and improving the lives of Americans with disabilities, senior citizens, families, caregivers, healthcare professionals and professional therapists. It has been the nation’s foremost event for companies to demonstrate their products and services to the largest community of end-users and industry professionals.
For the last 30 years, Abilities Expo has been the one show dedicated to educating and improving the lives of Americans with disabilities, senior citizens, families, caregivers, healthcare professionals and professional therapists. It has been the nation’s foremost event for companies to demonstrate their products and services to the largest community of end-users and industry professionals.
Independence Expo
Spina Bifida Association of America National Conference
Through exceptional medical sessions, practical workshops, and memorable social events, the SBA National Conference is an exciting and informative event that has truly earned its place as the world’s premier conference serving the Spina Bifida community.
Imagine having access to the most valuable resources and innovative products available to improve your independence and achieve your goals. United Spinal Association’s Independence Expo offers just that–– all under one roof and free for you to explore!
Spina Bifida Association of America National Conference
Through exceptional medical sessions, practical workshops, and memorable social events, the SBA National Conference is an exciting and informative event that has truly earned its place as the world’s premier conference serving the Spina Bifida community.
What Causes Spina Bifida?
The short answer is, "We aren't sure". Presently, there is no known cause for spina bifida although there are theories.
While women who give birth to a baby with SB are slightly more likely to give birth to another baby with SB, it is unclear whether SB has a genetic component making one woman more susceptible than another. Other factors include diet, medications and environment.
It is believed that certain medications present in the body during the first weeks of pregnancy may contribute to SB. The medications most cited are anticonvulsants and diabetes medications.
Additional possible causes often cited are: Obesity, being too hot during the first few weeks of pregnancy (such as a hot tub, hot shower, fever, electric blanket), and binge drinking during the first few weeks of pregnancy.
How can women decrease their chances of having a baby with SB?
1) Take at least .4mg of folic acid a day - even if you are not planning on getting pregnant.
It is estimated that the chance of spina bifida occurring can be reduced by up to 70% if women take folic acid supplements. It is for this reason that in 1998 the FDA began requiring that all enriched grain products in the US be fortified with folic acid.
The standard recommended supplement is .4mg (my wife's pre-natal vitamins contained .8mg - twice the recommended dosage). That being said, women who have had a child with spina bifida in the past are encouraged to take up to 5mg a day - more than twelve times the normal dosage.
For folic acid to be effective in reducing the occurrence of SB, a woman should be taking supplements at least three months before conception. For this reason, the Spina Bifida Association of America encourages all women of child bearing age, regardless of sexual activity to take Folic Acid supplements.
It is believed that certain medications present in the body during the first weeks of pregnancy may contribute to SB. The medications most cited are anticonvulsants and diabetes medications.
Additional possible causes often cited are: Obesity, being too hot during the first few weeks of pregnancy (such as a hot tub, hot shower, fever, electric blanket), and binge drinking during the first few weeks of pregnancy.
How can women decrease their chances of having a baby with SB?
1) Take at least .4mg of folic acid a day - even if you are not planning on getting pregnant.
It is estimated that the chance of spina bifida occurring can be reduced by up to 70% if women take folic acid supplements. It is for this reason that in 1998 the FDA began requiring that all enriched grain products in the US be fortified with folic acid.
The standard recommended supplement is .4mg (my wife's pre-natal vitamins contained .8mg - twice the recommended dosage). That being said, women who have had a child with spina bifida in the past are encouraged to take up to 5mg a day - more than twelve times the normal dosage.
For folic acid to be effective in reducing the occurrence of SB, a woman should be taking supplements at least three months before conception. For this reason, the Spina Bifida Association of America encourages all women of child bearing age, regardless of sexual activity to take Folic Acid supplements.
Some women have shown an inability to properly absorb Folic Acid. If you suspect you may have a problem absorbing folic acid, consult with your doctor.
2) If you are on any medications, find out now from your doctor if any of them may pose a threat to a pregnancy (even if you are not planning on becoming pregnant). By the time you realize you are pregnant - it may be too late.
3) Avoid extreme heat when possible. If you are lightheaded in the jacuzzi, shower, tub etc., you have over done it.
4) Of course, binge drinking is never a good idea - and now you have one more reason to add to the list.
5) Pay attention to your body - if you think you might be pregnant, start acting as if you are until proven otherwise. Those first three to four weeks are intensely critical to your baby's development.
2) If you are on any medications, find out now from your doctor if any of them may pose a threat to a pregnancy (even if you are not planning on becoming pregnant). By the time you realize you are pregnant - it may be too late.
3) Avoid extreme heat when possible. If you are lightheaded in the jacuzzi, shower, tub etc., you have over done it.
4) Of course, binge drinking is never a good idea - and now you have one more reason to add to the list.
5) Pay attention to your body - if you think you might be pregnant, start acting as if you are until proven otherwise. Those first three to four weeks are intensely critical to your baby's development.
Fetal Surgery
The Management of Myelomeningocele Study (MOMS) was a study completed in 2010 which determined that in-utero fetal surgery to repair SB could be beneficial. As you can imagine, it is not without risks.
The procedure is very new, so only a few hospitals in the United States perform it.
Your best source for information on fetal surgery is other parents who have had the procedure done.
This is a Facebook Group for those who have undergone fetal surgery for spina bifida, or are considering it... to offer support, answer questions, or just connect!
Here is a video from the Today Show regarding the MOMS study.
During Pregnancy
When expecting parents get the news that their child might have SB, one of the first thing parents want to know is what they can do RIGHT NOW to help their child. In terms of medical intervention, the only option is fetal surgery. Other than that, treat your pregnancy just as you would a typical pregnancy; eat right, get lots of rest and take care of yourself.
Outside of medical interventions, there are some other things you can do to begin preparing for your little one's arrival:
Have your OB/GYN Refer you to a Perinatologist
SB pregnancies are considered "high risk" and as such, many OB/GYNs do not have the training or equipment to properly manage an SB pregnancy. Perinatologists are specialized doctors who work with high risk pregnancies.
It is a wonderful community that will give you the support, encouragement and answers you need and want.
Chances are, you will want to start applying for various government programs once your little one has arrived. It is far easier to start assembling that information now than trying to scramble once your wee one is here.
Frequently Asked Questions
Will I be able to have a natural childbirth?
Due to the nature of Spina Bifida, most babies with SB are delivered via cesarean, usually a week or two before their due date.
Will I be able to see my baby once he/she is born?
Most likely. The hospital's main concern is to stabilize the mother and stabilize the child. That usually means mom gets a quick look and kiss before the baby is taken to the Neonatal Intensive Care Unit (NICU). Once mom is stabilized in her hospital room, she can be wheeled down to the NICU.
Will I be able to breastfeed my baby?
Most likely. Because the mother can't be down in the NICU 24 hours a day (she needs her rest too), most likely they will have you pump breast milk which will be given to the baby by bottle when mom is sleeping / eating etc.
Will we be able to have visitors in the NICU?
Maybe. Each hospital has different rules so you will want to check with them.
How long will my baby be in the NICU?
That depends on the severity of the baby's condition. Most likely mom will be discharged a few days before the baby is.
We live far away from the hospital, how will I be able to visit my baby once I am discharged?
Check with your hospital. Many hospitals (especially children's hospitals) have facilities where out of town parents can stay. Ronald McDonald Houses are a perfect example.
Parent's Note:
Our Annie was delivered via cesarian around 1pm . Mommy got a quick look and a kiss while the Drs were closing her (my wife) up. I (dad) walked with a team of nurses down to the NICU as they carried the wee one. Once my wife was closed, they wheeled her down to the NICU on a gurney so she could see the wee one once more. Then my wife was taken to her room where she was required to wait twelve hours before she could eat solid food. Once she proved she could eat solid food (she crammed a handful of crackers in her mouth around 1am) and keep it down, she was allowed to be wheeled to the NICU (in a wheelchair) to hold the wee one.
It was a good lesson: If you don't first take care of yourself, you won't be able to take care of anyone else.
Parent's Note:
Our Annie was delivered via cesarian around 1pm . Mommy got a quick look and a kiss while the Drs were closing her (my wife) up. I (dad) walked with a team of nurses down to the NICU as they carried the wee one. Once my wife was closed, they wheeled her down to the NICU on a gurney so she could see the wee one once more. Then my wife was taken to her room where she was required to wait twelve hours before she could eat solid food. Once she proved she could eat solid food (she crammed a handful of crackers in her mouth around 1am) and keep it down, she was allowed to be wheeled to the NICU (in a wheelchair) to hold the wee one.
It was a good lesson: If you don't first take care of yourself, you won't be able to take care of anyone else.
Quality of Life and Longevity
What is the Quality of Life Like for People with SB?
The Spina Bifida and Hydrocephalus Association of Northern Alberta has put together a series of videos to answer that very question.
For encouragement, check out the Inspirational Stories section of this website.
Something to Think About:
When people talk about quality of life, they are really asking, will my child be happy? Isn't that what a good life comes down to? Being happy? If that's true, disability has nothing whatsoever to do with quality of life - its attitude that matters. Does disability provide challenges? Of course. But there are plenty of miserable people in this world who do not have a disability. Is their quality of life better just because they don't have SB?
For more information on quality of life issues, get connected with other SB families, check out photos of children with SB, look up famous people with SB, check out this great video at Life Rolls On.
This video by Aimee Mullins is worth 20 minutes of your time.
What is the Average Lifespan of Someone with SB?
The short answer is, "No one knows". Consider this: Anyone born with SB in 1985 was born into a world without personal computers, dvd's, the internet or cell phones. Medical technology is moving so fast that studies on longevity simply can't keep up. It sounds odd but one thing is for sure: in the history of the world there has never been a better time to be born with SB.
Parent's Note: Due to the level of my daughters SB, she is a paraplegic in a wheelchair. I am sometimes asked, "Will she ever walk?", and my answer is, "Not until medical technology catches up with her. But some of the smartest people on the planet are working on it."
Sports and Recreation: North Carolina
The Adaptive Sports and Adventures Program is designed to challenge youth and adults with physical disabilities to develop skills that will lead to and enhance an active and productive lifestyle - one without barriers or limits.
The Charlotte Rollin’ Bobcats Wheelchair Basketball program exists with the purpose of giving individuals with physical disabilities an opportunity to be part of a team, learn about life, basketball and that a physical disability does not have to mean your disabled from doing what you want.
3/28/12
Fashion
With various disabilities can come some unique fashion opportunities. From easy-on-easy-off, custom fit clothing to bling for your mobility gear.
Children
Shoes to go over AFOs
Shoes to go over AFOs
SmartKnit
SmartKnit Seamless AFO and KAFO socks for adults and children provide a protective foot and leg interface designed specifically to help AFO and KAFO wearers maximize skin health, successful compliance of orthosis use, and all-day comfort
SmartKnit
SmartKnit Seamless AFO and KAFO socks for adults and children provide a protective foot and leg interface designed specifically to help AFO and KAFO wearers maximize skin health, successful compliance of orthosis use, and all-day comfort
Adults
Mum's Victory Over Spina Bifida
After a 22-year battle with spina bifida, Amanda Richter says she is ready to declare victory.
Amanda said the joyous birth of her first child, Hailee, last November finally extinguished the mindset that she was handicapped and would not lead a normal life.
During Amanda's infancy it was believed she probably would not go to school, marry, have children or be able to live independently - but today the beaming mum has accomplished it all.
LINK HERE
Amanda said the joyous birth of her first child, Hailee, last November finally extinguished the mindset that she was handicapped and would not lead a normal life.
During Amanda's infancy it was believed she probably would not go to school, marry, have children or be able to live independently - but today the beaming mum has accomplished it all.
LINK HERE
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