Parenting & Family

A Mother Harnesses Her Love and Entrepreneurial Spirit To Help Her Son and Others

Tue, 01 Jul 2008 15:30:00 GMT

In 1999, Laquita Conway was in the midst of purchasing a farm out of state when she received the news she’ll never forget: Her son Aaron had been in a severe motocross accident and was potentially paralyzed for life.

Laquita jumped on the next plane to California to rush to her son’s side. When she arrived, the doctors gave her a grim prognosis for Aaron’s future. Aaron was a C-6 quadriplegic, and the chances of him ever functioning again were “one in a million.”

“I personally slid down the hallway after yelling at the doctors and felt that there was no way that I could get up again,” Laquita said. “Then I realized that I wasn’t the one who was in need. It was Aaron.”

While Aaron began inpatient rehabilitation, Laquita scoured for more physical therapy options for her son. What she found shocked her; resources for those with new SCI injuries were few and far between.

Aaron chose a rehabilitation program at a kinesiology lab at Cal State Northridge run by personal trainer and former professor Taylor Issacs. There he had massive improvements, regaining the ability to walk and eventually even biking the L.A. marathon.

Meanwhile, Laquita pursued the idea of “creating a non-profit rehabilitation center that would serve special populations.”

“It’s still inconceivable to me that people have no place to go once their hospital stay has been exhausted,” said Laquita.

Aaron and Laquita came up with idea of C.O.R.E. (center of rehabilitation exercise), and in 2007 the duo decided to take off on a cross-country tandem bicycle tour to promote their venture.

Departing from San Diego and eventually arriving in Florida, the tour attracted attention and brought in funds to the CORE concept. Further fundraisers and promotions have increased CORE’S presence, and this June Aaron and Laquita took off from San Francisco on another cross-country venture that they plan to complete in Washington D.C. in September

“This year's tour is really set to solidify and get the media attention and all of the networking with the various foundation alliances,” said Laquita, who added that the goal of the tour is to raise a $1,000,000 with which to open the first CORE branch by the end of the year.

Laquita, who formerly worked as an importer and in sales, has always been an innovator and an entrepreneur, and has utilized her business skills to help the CORE model grow.

“I have a double-sided ambition. One is that it [CORE] is such a great need for so many people. I mean, we’re really talking about millions of people because we aim to go way beyond SCI, so with that my entrepreneurial spirit gets to go wild,” she said.

Laquita said that CORE is building their brand with a strategy called “reverse development,” in which an organization becomes a known entity before it actually exists in the physical sense.

“Our idea of this concept of reverse development is actually quite brilliant for this type of venture, in that we are breaking boundaries and creating something that doesn’t exist, and we’re creating it so that when those doors open they will open with success,” she said.

Laquita stresses that CORE will be affordable to all, and hopes to utilize community volunteering resources to help cut down on costs.

And while she plans on handing over the day-to-day operations of the facility to other professionals, she will continue to work actively on the project: marketing, networking, and ensuring that CORE can offer all of its clients the services they need.

Although the ride for her and Aaron has been a long and arduous one, Laquita credits their emotional and physical success to their involvement in service as a compliment to Aaron’s rehabilitation.

“Going into the larger picture of service is when you feel like you’re the most alive,” she said.

Read More
Read Part I of Laquita and Aaron's story, Mother and Son Bike Cross-Country to Raise Funds and Awareness for Rehabilitation.

Disability and Pregnancy

Tue, 01 Jul 2008 00:04:00 GMT

I’ve made it through my first trimester and now feel comfortable sharing with the world that I am finally pregnant. It’s been a long road just to get here, more than two years of “trying” and hundreds of dollars on ovulation and pregnancy tests that I was sure were faulty! But, I guess it was all worth the struggle, because now we are finally into that wild and scary new place, the world of eventual parenthood.

Funny thing is that everyone assumed our challenges getting pregnant were because of me and my disability. Actually, we finally discovered that I was not the problem, but rather that my husband was the one with the issues. Don’t worry, he is a strong man and can handle that I just “outed” his fertility issues to the whole world!

This is our first pregnancy. I have been a T5/6 complete paraplegic for more than 19 years. I’m 35 and have always been very active and athletic. I was a member of two Paralympic Alpine ski teams, have traveled around the world and lived a fun and full life. But now I am entering a world of the unknown and for the life of me, I have not been able to find much good, reliable information about being disabled and pregnant. The one book I have found, The Disabled Women’s Guide to Pregnancy and Birth by Judith Rogers, is pretty informative and a good resource, but unless your disability is exactly like the women featured in the book, there are lots of questions that still go unanswered.

The best resources I have found are my fellow disabled girlfriends who have been there before, who have already had to problem solve things like how to find a crib and changing table that will enable me to safely handle the baby from my wheelchair. It has been these girlfriends who have shared with me the ups and downs of being pregnant and disabled and helped me to prepare and know what to expect in the upcoming months and years.

I guess I should be thankful, because if I hadn’t had a doctor confirm to me that I was actually pregnant, I would have never known. I suppose the extreme fatigue - some days I could barely get myself out of bed - should have told me something was up, but I just figured I was being lazy or that my body was just really tired, which it was!

Thankfully, I never had any morning sickness, perhaps a little queasiness a couple of times, but never anything that had me rolling to the bathroom as fast as possible. Other than the extreme fatigue, which lasted the first two months, I really had no indication that I was actually pregnant. But right about at two months, my leg spasms, which are generally pretty strong, became insane. Not all the time, but once they did start, it was just ‘hold on for the ride.’ One time I was rolling into the kitchen to put down a plate and my hips spasmed so forcefully I almost fell out of my wheelchair. I was lucky to catch the plate before it crashed to the ground.

This being the case, my doctor decided to leave me on my baclofan throughout the pregnancy. My doctor’s take on the situation is that while the baclofan cannot be stopped cold turkey (which means that the baby, once born, will have to be weaned off the medication), it shouldn’t cause any harm to the baby. But, if I were to go off the baclofan now, my spasms could get much worse and cause more harm to me and the baby if they were to make me to fall out of my wheelchair. So for now, I am on all my same medications: baclofan, macrodantin, and ditropan. I have tried to get better about my stretching and yoga, but I am by no means doing it regularly.

So far I’ve gained three pounds, which I guess is right on track. Let’s hope that continues, but somehow I doubt it; I’m just starting to get various cravings which I will write about next week.

I hope all you who have “been through it” or are hoping to “be there someday” will join me and share your experiences, your challenges, your hopes, and successes. I know we have much to share!

I am starting a weekly column throughout the rest of my pregnancy to share my experiences, questions, and excitement and to increase the information out there about disability and pregnancy.

Knowing there are many more of you girlfriends and out there on Disaboom, I thought wouldn’t it be cool to have a column where we can share experiences of being pregnant and disabled. Where we can share our hopes and our fears and help each other through this new and uncharted territory. Where the experts are the ones who have “been there and done that” and we can ask you for insight, support and resources. This is a place where we can all share, learn, and enjoy the exciting experience of becoming a parent.

It is my hope that those of you who have been through a pregnancy, even raising kids, will share your experiences here and we can all start a great conversation and learning process. I know there are thousands of women with disabilities out there who have been down this road and have much information to share, not just with me, but with any others who might be or hope to one day become a parent.

The Family-Centered Approach: Easing Anxiety Before a Medical Procedure

Mon, 30 Jun 2008 23:43:00 GMT

Children with disabilities demonstrate impressive courage when facing medical procedures that would frighten most adults. As parents marvel at their strength, it can be easy to miss telling signs of anxiety and distress in children. It’s important to identify these symptoms and teach effective coping strategies.

Some children are able to confide their worries through words spoken to someone they trust. Many, however, show their anxiety in other ways. Nightmares, the development of new fears, and irritability are common signs that a child cannot cope with his/her current level of stress. Somatic complaints, like headaches and intensified pain, can also indicate your child needs support lowering the anxiety level. Children may express their worries in the form of drawings or play instead of words.

Communication can be a powerful tool to make children feel more comfortable, secure, and prepared for an upcoming event. Encourage your child to ask questions and share concerns. Use your child’s developmental level (age and maturity) as a compass to guide your responses to his/her questions. Answers should be easily understood, but should also be honest explanations of what the child can expect. These challenging times offer parents the unique opportunity to build trust and strengthen the bond they share with their child by serving as a consistent source of support.

There are a number of tools available to help children decrease their anxiety. These tools can be presented in a way that serves the added benefit of assuring them that they are not alone in their experiences. Prepare for a hospitalization or surgery by reading age-appropriate books with your child. Schedule a tour of the hospital before the procedure appointment in order to meet the staff and establish the area as a familiar environment.

Teach, practice, and model deep, slow, diaphragmatic breathing to use before a potentially painful experience. Whenever possible, give your child choices during the process to instill a sense of control in his life. These choices can be as simple as selecting which pajama pants to wear to the hospital or which stuffed companion will travel with him to the doctor’s office.

Positivity also packs a powerful punch in lowering your child’s anxiety levels. Research shows that children with negative self-statements (like “I can’t do this; I’m too scared”) have more difficulty coping with stress and dealing with anxious feelings. Help your child to reverse negative thinking by teaching ways to reframe the experience (“I know I can do this. I’ll be stronger than before”).

Visual reminders can make it easier to focus on the positive aspects of challenging and even painful experiences. Create a deck of “coping cards” for your child with personalized inspirational messages. Friends and family can pitch in with supportive notes that can also serve as a distraction moments before or during a painful procedure.

Finally, decreasing anxiety is a family affair. Children with disabilities are usually adept at sensing worry in others. Involve everyone—including siblings and grandparents—in the preparatory process and communication about what everyone can expect. Develop a plan for when updates will be provided and family visits will commence. Working together to harness the uncertainty of frightening events can serve to lower everyone’s anxiety

Bloggers, Mother's Group Band Together to Support Postpartum Depression Legislation

A. Kairi — Wed, 25 Jun 2008 17:18:00 GMT

According to a press release, the MOTHERS ACT (The Moms Opportunity to Access Help, Education, Research and Support for Postpartum Depression Act) recently introduced in Congress is receiving some high profile support from mother's groups and bloggers.

The legislation was sponsored by Democratic Senators Robert Menendez (D-NJ) and Richard Durbin (D-IL). The legislation aims to increase support, education, and screening for postpartum depression. The legislation also has a broader goal of increasing research into the causes of postpartum depression (PPD) which currently remain mostly a mystery.

The legislation hopes to increase the likelihood that mothers afflicted with PPD will be discovered early by providing two grants for health care providers.

The woman's support group Postpartum Support International, the largest non-profit organization that is solely dedicated to improving perinatal mental health announced on Sunday that it will be collaborating with BlogHer which is a large group of female bloggers, and with Postpartum Progress, which is the main United States blog devoted to issues concerning postpartum mood disorders.

The groups hope to galvanize support for the MOTHERS Act legislation by placing calls to senators on October 24th. The groups also plan to blog about the legislation on that date.

The president of Postpartum Support International made these comments regarding the legislation and call for action: "The good news is that perinatal mood disorders are preventable and easily treated once detected. The MOTHERS Act legislation is key because its initiatives are preventive, educational and treatment oriented. PSI urges you to participate in this important campaign."

The author of the Postpartum Progress Blog Katherine Stone went on to say: "Postpartum mood disorders are a disease of motherhood - they can affect any woman who becomes a mother, regardless of who she is. If we don't do something to better educate and treat the mothers who may suffer, we are doing a disservice to all mothers, children and families everywhere. All it takes is a phone call to let the Senate know that the women of America want the MOTHERS Act to pass."

Postpartum depression was once a little talked about condition that has hit the mainstream media in recent years due to a rash of afflicted mothers, such as Andrea Yates, who horrified the nation by murdering their children. There have also been many highly publicized cases involving mothers afflicted with PPD making the tragic decision to commit suicide.

The BlogHer Co-founder and CEO, Lisa Stone commented: "The BlogHer community has chosen Global Health as the focus for our year-long blogging activism initiative, BlogHers Act. Blog Day for the MOTHERS Act is exactly the kind of project where BlogHer's community can make a difference on legislation that will save women's lives."

The groups are urging any interested parties to show their support by blogging about the legislation and joining the day of action on October 24, 2007 by placing calls to their senators to show their support for the MOTHERS Act. Anyone interested in participating may also find more information by visiting the following link: www.postpartum.net.

DS/USA Youth Mentoring Sports Program

Mon, 23 Jun 2008 21:08:00 GMT

There are many youth that enjoy sports of all kinds. At times, the idea of sports can seem a little overwhelming to anyone. The good news is that, through the DS/USA Youth Mentoring Sports Program, you can make a difference in the lives of youth with a disability. It is through the DS/USA Youth Mentoring Sports Program that youth with a disability are paired with mentors in the area of sports. You should consider becoming a part of this organization.

Advantages to Youths with Disabilities
There are numerous advantages to youth with disabilities through the DS/USA Youth Mentoring Sports Program. This organization is more than just a group of people getting together to do a few simple sports. The DS/USA Youth Mentoring Sports Program enables youth to feel empowered.

Children of all ages and even adults benefit from sports. There is the advantage of exercise and the benefits to the body in general. It is important to be active in your life to reduce certain health risk potentials. Through the DS/USA Youth Mentoring Sports Program, youth with a disability are able to participate in exercise through active sports.

Participating in this organization allows youth to feel a sense of accomplishment. In fact, the group's motto is: "If I can do this! I can do anything." This attitude toward accomplishment and attempting sports is carried over into other areas of our lives. Stop and think about how much better the world would be as a whole if everyone lived by the motto that is part of the DS/USA Youth Mentoring Sports Program.

Socialization and connecting with others on a deep emotional level should not be limited to only youth without disabilities. The DS/USA Youth Mentoring Sports Program enables adolescences and kids to really connect with their mentors. This is an excellent way to meet other kids, adolescents and adults.

Advantages of the Program to Mentors
Not only does the DS/USA Youth Mentoring Sports Program provide advantages to the youth involved in the program, but it affords wonderful opportunities to the mentors. Being a mentor is a commitment of time and compassion. Children with disabilities do not want pity but seek to connect with the world just as other children their ages. Mentors of the DS/USA Youth Mentoring Sports Program have the opportunity to connect with a youth who has a disability on very personal and deep emotional level.

Part of being a mentor for the DS/USA Youth Mentoring Sports Program means that you help to train the youth in particular sports. You are with the adolescent or child the entire process. You get a chance to be an active part of the entire program and to help mentor and encourage. Everyone in life needs a chance to have a true friend. You not only become a friend to the youth but you have a chance for them to befriend you as well.

There is plenty of training for mentors and help to be in local chapters. You can participate in Wounded Warriors, Paralympic Athletes and even Other Elite Athletes. Being a mentor to the DS/USA Youth Mentoring Sports Program gives adults the chance to give back to the community and to help where there is a need. It is a huge sense of personal accomplishment being part of the DS/USA Youth Mentoring Sports Program.

Contact Information for DS/USA Youth Mentoring Sports Program:
Adam Scott
DS/USA Youth Sports Mentoring Program Manager
240-268-1250
ascott@dsusa.org

National Assessment of Education Progress

Mon, 23 Jun 2008 17:43:00 GMT

The National Assessment of Educational Progress (NAEP) is a program designed to provide statistical analysis of the progress and performance of America's educational system. For this reason, the NAEP is often referred to as the Nation's Report Card. The NAEP was initiated in 1964 and the very first assessments were released in 1969.

What is the purpose of NAEP?
The purpose of the NAEP assessments is to provide a broad range of information about student achievement and teaching goals using finely tuned demographic breakdowns and analysis. These assessments are not based on results from individual schools, but rather are extrapolated from representative samples of students across the country.

The primary long term assessments of the NAEP are determined from test results conducted in 4th, 8th and 12th grades, focusing on students who are 9, 13, or 17 years old. These specific grades and ages were singled out after research indicated these were the most critical and decisive points during the average student's academic career.

Goals of NAEP
Although the NAEP is used to determine short term goals, the primary purpose is to establish a long term commitment to education excellence by supplying information on what instructional goals are working best. Assessment material is therefore gleaned from testing conducted across a comprehensive range of disciplines including, reading, writing, mathematics, science and U.S. history.

Essentially, the NAEP seeks to meet two overriding goals: facilitating the ability to compare student achievements by state, and to measure fluctuations in those achievements. As with all standardized methods of assessing educational progress, the NAEP has been subject to criticism that special and individualized needs of certain segments of the student population simply cannot be addressed by the system's reliance on mainstream sampling.

What does this mean for students with disabilities?
Students with disabilities and special education students have traditionally been underrepresented from such comprehensive assessments. A 1997 report from the National Center of Educational Outcomes estimated that half all of students with disabilities had been excluded from taking part in the NAEP.

The passage of the Individual with Disabilities Education Act (IDEA) in the same year addressed this failure and mandated that all students participate fully in the assessments. Students with disabilities are today encouraged to take part in the NAEP assessments if they have already taken part in a state assessment test, and if they are capable of meeting the NAEP accommodations required for a special education student.

In an effort to allow all students to be assessed even these requirements have become more flexible. When a student with disabilities or special needs does not meet the above standards, special accommodations can be requested as long as they still meet the NAEP regulations. An example of a special needs accommodation that would violate these regulations would be if a student's disability required that the testing process be spread out over several days since the NAEP mandates that its administrators can be present in each school for just one day during the assessment.

What the inclusion of students with disabilities and special needs in greater numbers than ever means is that a far more comprehensive portrait of the performance and achievement gains of this vital segment of the student population is available for analysis.

Proponents argue that since future educational policies and decisions regarding both curricula and teaching methodologies will be based on the statistical analysis measured by the NAEP, students with disabilities and there special needs are being addressed with greater accuracy and attention to detail than ever before.

Deaf Mom Shares Her Views on Parenting, Role Models, and Acceptance with a Slice of Real Life

Wed, 11 Jun 2008 21:19:00 GMT

Reading the honest Technicolor life shared by Karen Putz in her Web site www.deafmomworld.com often brings tears to readers' eyes. The tears are from laughing, not crying. Many moms can identify with Karen and the trials she shares so openly in parenting. One of her blog entries discusses the search for a missing hearing aid before a trip. Another blog entry is entitled "Twenty Teenagers and the House is Still Standing."

There are times when Karen turns off her hearing aids for a little quiet at home, "Oh yes, my hearing aids are off right now. Sometimes I play music when I write, and sometimes I prefer the total silence without my hearing aids. My kids can still bother me, because they come in and start signing. Hmmm, maybe I should develop some custom-crafted blinders for those times?"

While her writings are tongue-in-cheek and entertaining especially to parents, her other blog entries have resulted in worldwide attention.

When she was mistreated at the hands of an employee at a fast food drive thru that offered no accommodation for someone who was deaf, there was an Internet revolt against the Steak 'n Shake. Instead of serving her as a customer, the fast food employee threatened to call the police if she didn't leave. Why? Because she couldn't hear the intercom system in the drive thru as she is deaf. Her battle against Steak 'n Shake is far from over as she's encouraging long-term change for every drive thru.

"I am meeting with the Steak 'n Shake attorney in July. At this meeting, the manager will be there as well, supposedly to offer an apology in person. I am hoping that the corporation will install a system that provides access to deaf and hard of hearing customers beyond just slapping up a sign (which does nothing)."

While her supporters vow to fight the fast food debacle at other drive thru locations, Karen's intent on starting the Web site was not to incite an entire community. The way she writes, her stories create a bridge of acceptance as they connect far beyond people who are deaf and hard of hearing.

"I started the 'A Deaf Mom Shares Her World' in August of 2006, totally on a whim. I just wanted to share snippets of my life with family and friends and it blossomed into something more. I started the 'Jobs, Careers and Callings' Web site for my kids. I didn't have deaf and hard of hearing role models when I was growing up, so I wanted a place where they and other deaf/hard of hearing students could explore careers with deaf and hard of hearing people in various jobs."

Karen is a Deaf Mentor in the Illinois Early Intervention System, while she also is a freelance writer for www.disaboom.com and www.parentingsquad.com as well as her own Web sites www.deafmomworld.com and www.deafhhcareer.com.

She grew up hard of hearing but became deaf at the age of 19.

"It was actually very sudden. I was barefooting (waterskiing on my bare feet) and I turned to cross the wake. My foot got caught on the wake and I slammed into the water sideways, instead of doing a normal tuck and roll. For days, I thought I just had water in my ear, but I had gone profoundly deaf at that point. It was rough at first. I didn't share my story with many people. One afternoon, I started crying and my roommate was asking me what was wrong. 'I can't hear anymore,' I told her. But I didn't explain how it happened and she didn't understand why I was crying about it. Shortly after that, she moved out and I had another roommate who was much more empathetic. I didn't grieve much after that and that was because I was living on a co-ed floor with lots of other deaf and hard of hearing students. I was having fun connecting with so many people and embracing a new way of life. Classes were hard, because I didn't know American Sign Language. I tried using an FM system to understand the teachers, but it was useless. I ended up lip reading the interpreters and picking up signs."

When it comes to acceptance of people with disabilities, Karen has seen some things change while others have stayed the same.

"I see my kids having an easier time of getting their education with the use of interpreters, FM systems, better hearing aids and technology. But I see that we still have a long way to go to break down the worse barrier of all: attitudes. I still see my kids coming up against other kids who shun them because they are deaf or hard of hearing - or they develop some friendships that are merely surface friendships," Karen explains.

"This is why I feel so strongly that we need to do a better job educating kids in elementary school so that they grow up among people with disabilities and learn to value them as equals. At the same time, I recognize the importance of my kids having peers just like them, to communicate with and identify with. That's why we are always having sleepovers with deaf and hard of hearing kids from all over - those friendships are very important to my kids."

Karen's long-term hope for diversity is, "to find ways to overcome the attitude barriers. I want my three kids to experience life to the fullest and know that they can pursue any dream that they want to."

In sharing her life with the world, Karen also recognizes the importance for people who are hard of hearing or deaf to share their stories. "The more we share our stories, the more we can connect with one another and understand each other's unique perspectives."

For people in the hearing community, she simply wants them to, "Spend some time with us, get to know us and see the person-- the whole person and not just the disability."

With life as a mom, Karen looks back on many experiences with pure pride.

"I have several moments that stand out, but one that I really cherish is that I was able to help a friend give birth at home to her third baby. She had her two other children via cesarean and she asked me to be her doula for this birth. She labored all night off and on. By the morning, her labor finally started to pick up and the husband called the midwife. She moved into the birthing tub and I could see that the baby was moving down. The midwife walked in just as I asked the husband if he was ready to catch the baby. A few pushes later, she had a beautiful baby girl. I will never forget the look on her face as she brought her baby up and out of the water. Definitely a cherished memory for me."

As a parent, when it comes to tips on organization for other busy moms, Karen answers that issue with a direct, "Oh lordy, you're asking the wrong person!"

For a healthy dose of reality visit Karen Putz at www.deafmomworld.com, or visit her Disaboom member profile.

Fitness for Kids with Disabilities: What Things Can Parents Do?

Wed, 04 Jun 2008 20:02:00 GMT

Physical activities and games are highly important for children, including those with disabilities. Parents play an important role in making sure their children have a variety of physical fitness options. Each child's flexibility and aerobic capacity will be different. Therefore, it is up to the parent to research different types of exercises and decide along with the child's physician, which are appropriate. It helps to make the physical activities enjoyable to the child. Below are a few ideas to get started with.

As with many physical activities for children, close supervision and sometimes parental assistance will be required for these activities. Keep in mind that kids with disabilities may sometimes require extra help and supervision. It is also important to check with any child's physician before starting or stopping any physical routine.

Interactive Reading
A love of books is important for all children, as is exercise. Some children with disabilities are only able to move certain parts of their bodies. This physical activity will accommodate kids who are limited in their movement, but can move some areas of the body.

For this exercise, simply have the child use their body, such as arms, legs, or facial expressions to act out a story they will read aloud from a book. If the child is too young to read or unable to read, someone else can read the story and the child can act it out with various bodily motions as they hear it. If known by the kids, sign language can also be incorporated into this, along with more physical movements. This activity creates strength and exercise in any areas of the body used for it. It can also be a great warm-up or cool-down exercise.

Tummy Scoot
This exercise can be done in a couple different ways. One way to do the tummy scoot is by use of a gym scooter. The child can lie on his tummy on the gym scooter and use either the arms or legs to propel the scooter forward. Skateboards can also be used for this exercise in the same way as the scooter. This physical activity should be done in an open area with a smooth and safe floor surface. An alternative for children who will not be lying on their stomachs is to have those kids sit on the scooter or skateboard and maneuver it with either their arms or legs.

Swing Switch
For this activity, the child will use a swing in different ways, depending on physical abilities. One way for the child to swing is by standing in the swing and using the entire body to propel the swing. This method can increase strength and provide exercise to most areas of the body. Another way to utilize the swing is to have the child lie on the stomach in the swing and and use the body to propel the swing.

Some kids may need a starter push for this one. Having the child lean back in the swing and stay leaning back the entire time, while causing the swing to move is a great way to increase strength in the arms, abdomen, and back. Straightening the legs during this motion adds further benefit by exercising the legs.

How Fathers of Children with Disabilities Cope with the Diagnosis

Fri, 30 May 2008 21:22:00 GMT

"Be brave as your fathers before you!" - Thomas Edison

Thomas Edison’s admonition for dads applies particularly to those with a disabled child.

Researcher Barry Carpenter—with a Down syndrome daughter—contends, “Fathers who can discuss concerns with similar fathers help decrease isolation.” What do other dads say?

James Keating, president of Developmental Enterprises Corp. in Norristown, Pa., has a son at a DEC center, who “benefitted from support, occupational therapy, and socialization."

Devastated
Mike was “late hitting milestones (without) evidence of his problem until he was 3 years old,” Keating recalls. On a brother’s birthday, Mike fell for no reason.

Keating’s doctor requested tests. “The wrist X-ray said Mike’s bone development wasn’t up to chronological age. I was devastated at raising a child that would never do things we think of as ‘normal’.”

Mike, 41, is “happy in a group home attending a daily workshop. Our family emerged with greater feeling for developmentally disabled persons.”

Jim and Mary Keating “didn’t let Mike’s disability be the defining family characteristic. We lived as a family. When he and I are together, we listen to music, weed landscaping. When I run errands, he rides `shotgun’.”

Keating credits DEC for “infinite patience. They’ve helped me cope.”

DEC founder
Bud Kohn’s son Rob has his vocational/habilitation needs met at a DEC center. Bud, a former DEC president, was a DEC founder in 1971. When Kohn knew Rob was disabled, all he knew of Down syndrome was college psychology textbook “names like idiot. At his birth there were few, if any, services for him.”

Help came from the Montgomery County (Pa.) Association for Retarded Children. “Of utmost importance was a wife of understanding, maturity, and support.”

Kohn emphasizes fathers MUST: Accept their child; obtain the best available services appropriate for him/her, and help other families and individuals with a disability.

You’ll cry a lot
In Chicago, Dan Thompson’s 18-year old daughter has Cerebral Palsy. “The day I visited a school solely for kids with disabilities was when our challenges hit. We cope trying to maintain a sense of humor. You’ll be frustrated with doctors/therapists, hate insurers, miss work, be envious of dads who have it easy—you’ll cry a lot.”

Coral Gables (Fla.) Police Lt. Bart Barta couldn't believe Daniel, an “apparently normally infant, would be diagnosed with autism at 3 years old. Fathers of a child with autism go into denial, withdrawal. My first question to Daniel's neurologist was, ‘What can we do to help’?”

Daniel “motivated me to help others. I speak with fellow officers about interacting with people with autism. Daniel has made me a better person. Every day I’ve seen tremendous progress (from) therapy.”

Backup is “knowing God will not let me bear more than I can handle. There’s something about helping others going through similar struggles that can help heal oneself.”

What they are
Lt. Barta’s counsel is:

Having a disabled child doesn’t make them any less of a person.
Their ability to make meaningful and significant contributions to our world is endless.

Most of all, he adds, "Love your children for who they are, not for what you want them to be."

Then, there’s Arthur, a psychologist, with an anorexic daughter. His advice is: “Be prepared for the long haul. However, limits are necessary; you’ll have to make choices for the good of your family.”

Try “to disengage emotionally somewhat for more reasoned decisions,” including a good clinical team with “advice that makes sense to you. Understand your child will do whatever he/she can, including lying and manipulating.”

Validate needs
Mel Flitter blamed himself for passing poor genes to son, Sandor. “It was the luck of the draw. The father/parent must explore every avenue to help his child, short of self-destruction, but recognize your best effort is the most you can offer.”

In his wheelchair in Jacksonville, FL, Herb Drill heads Able Me & Associates. His e-mail address is herbdrill@ableme.com. He has Muscular Dystrophy.

The Gift of Solidarity: How to Teach Children About Their Disability Culture

Thu, 29 May 2008 22:53:00 GMT

Identifying as a member of a cultural group has important psychological benefits for people with disabilities of all ages. More parents are making the shift from seeing their child’s disability from the medical model (which focuses only on physical impairments and barriers) to the social model of disability (which recognizes that attitudes and acts of discrimination are the real culprits blocking their child’s full participation in society).

Embracing this new way of thinking can lead to a harsh encounter with reality on the depth of oppression that still exists for this newest generation. The perfect anecdote for this shared feeling of hopelessness from parents is an exploration of the meaning of disability culture.

While disability culture includes an unmatched understanding of discrimination based on abilities, it surpasses the boundaries of just a unified experience of oppression. Increasingly, people with disabilities are developing their own forms of art, communication, symbols, and events that celebrate our rich history and promising future. Learning about the past of people with disabilities is one important part of understanding our identities as individuals in a group.

Recognizing the present and future of people with disabilities also provides the unique opportunity to learn through living and enjoy the examples of leadership provided by others. Lessons like maintaining a sense of humor and resilience in the face of challenges, accepting interdependence as a way of life, and being flexible and adaptable are important skills to be honed for children from every cultural background.

It’s not uncommon for parents to be the first to recognize their child’s beauty and potential. Many parents work to strengthen their offspring’s identity as an individual with a disability, but it can be uncomfortable facilitating membership to a culture to which they don’t personally belong. This is a unique challenge, but it can be spun into even greater rewards for the entire family by embracing disability culture together.

Many new parents of children with disabilities have been comforted by the story Welcome to Holland, in which the discovery that your child will be atypical is compared to the shock of landing in a foreign country you didn’t plan for or expect. Disability culture is the positive, supportive, motivating, and empathetic, but also unexpected gift that you get upon arrival to Holland. It’s the part of disability that’s never explained with a diagnosis but will be much more helpful to one’s identity than any medical intervention.

There are several ways you can open the doors to your child and your family to learn about and enjoy the solidarity offered by disability culture.

Here are a few options to get you started or further your journey:

Teach age-appropriate aspects of history regarding the oppression of people with disabilities. For example, young children can learn that many older people with disabilities weren’t able to attend schools with their siblings and friends. Adolescents are better equipped to learn about the horrors of the Holocaust for people with disabilities.
Check on your state’s progress on including mandatory curriculum on disability culture in all public schools. Contact your child’s teacher and/or librarian to include books and learning materials that portray disabilities in a positive and accurate manner.
Explore these amazing resources with your family: The Disability History Museum, and the Museum of Disability.

Keeping Your Family Fit

Fri, 16 May 2008 19:35:00 GMT

“A family that plays together stays together.” That’s what one of my patients once told me. While I was a therapist at a rehab hospital, I had a patient who was very eager to find new ways of exercising and playing sports. He was newly injured with a C-6/7 spinal cord injury, and his family was there every day participating in his therapy. They were truly his motivation for returning to a normal life. He and his family were very active before his accident, and he wanted to continue to live that active lifestyle.

He was a fun patient to have because he wanted to try it all. We tried tennis in a sports chair, taping his hand around the handle to help with his grip. I put him in a racing chair and told him to imagine crossing the finish line at Peachtree Road Race. We smashed each other in rugby chairs while his kids cheered and his wife cringed. He was determined to continue to be a positive role model for his children and show them how to live a healthy and active life.

For me that’s where it started, with my parents. I saw how active they were, playing tennis kayaking, hiking, and camping and it just made sense for me to participate with my parents. My interests may have changed, but my love for fitness and activity is still around as a priority in my life. Here is an easy guideline to help make fitness a priority in your family.

1. Have your family doctor approve everyone for exercise. If there are specific conditions like asthma, your physician can help you think of ways to safely modify activities.

2. Parents should set the example. If children see you eating healthy and exercising, they will most likely follow in those footsteps.

3. Aim for 30 minutes of outdoor activity three days a week. You can do anything from raking leaves to building a snowman or walking the dog; just get out and get moving.

4. Keep it simple and fun.

5. Go to a park, play horseshoes, take a walk, or make an obstacle course and time each other through it.

6. Ride your bikes (or handcycles).

7. Sign up for a 5K and train for it together. There are plenty of walk/run/push races out there to choose from. By training together, you are more likely to stick with the program.

8. Have a Family Fitness Night. Each week one member of the family gets to choose which fun family activity to do, whether playing tag, swimming, or Frisbee golf.

Some of my favorite childhood memories came from our family activities: kickball games, Mom teaching me how to water-ski, watching my little brother get dragged along the lake (priceless). Keeping your family fit helps everyone remain (or get) healthy, makes exercise more fun, and it helps build strong family connections. Start today!

California State Senator Introduces Bill to Restrict Restraint and Seclusion of Students with Disabilities

Tue, 13 May 2008 23:08:00 GMT

California State Senator Sheila Kuehl has authored and introduced a bill aimed at addressing concerns that students with disabilities are being unnecessarily secluded and restrained at school. The bill is a reaction to a report released in June of 2007 by the disability group Protection and Advocacy Inc.

The report, the result of a year-long investigation, documented a pattern of mistreatment of students with disabilities including: a 10-year-old boy with disabilities tied to a wheelchair and left in a school van for much of the school day, the construction of a seclusion room where an 8-year-old boy with psychiatric and developmental disabilities was locked away, and other repeated incidents of students with disabilities being restricted or restrained. According to the report, despite their damaging nature, many of these practices are not prohibited under state law.

The bill, introduced on February 21, 2007, would prohibit seclusion of pupils in California schools and restrict the use of restraint to “clearly defined emergency situations.” Additionaly, it would mandate that educational providers who use restraint have annual training, and that a data system be created to track the use of behavioral restraints.

“I was surprised and outraged to discover that these dangerous and damaging practices are still in use in California schools,” said Kuehl. “I’m proud to author what will be the first state law in the nation to comprehensively address the situation,” she added.

Playing with the Grandkids: Ageless Activities

Mon, 12 May 2008 20:27:00 GMT

There have been several studies conducted that have shown how beneficial it is to remain active throughout your life. Staying active while aging helps to not only keep your body healthy, but it also helps to keep your mind and emotional state healthy. One fun and easy way to stay active is to play with your grandchildren.

Active Activities
The type of activities that you do with your grandkids is going to depend a lot on your current fitness level. If you are still active and able to participate in more physical activities then consider: hiking, biking, playing ball games, swimming and playing tag. The more of these activities you do now, the longer you will stay healthy and active. If you are working on your fitness level, then you can work your way up to modified versions of these fun activities.

Moderately Active Activities
Grandparents who are still moderately active, but have a disability, mobility, strength or endurance issues to contend with, don't have to sit things out. They can try modified versions of the above active activities, or they can try some lower key activities. Some moderately active activities that grandparents can do with their grandchildren include bowling, miniature golf, fishing and Wii games.

Sit Down Activities
Older grandparents, or grandparents with health concerns, can also have fun with their grandkids. Just shift the focus on activities that are less physical. Board games, arts and crafts, telling stories and reading stories are all activities that grandparents can do with their grandkids. These activities will keep all of your minds active, which will not only help you to reduce your risk for neurological disorders like dementia and Alzheimer's disease, but it will bring you all together as a family.

Making Modifications
As mentioned above, you can modify some of the more physical activities listed above so that you can participate in them even with a disability. Simple modifications include things like playing on a surface that is easy for a wheelchair to navigate over, lowering the volleyball net or using adaptive equipment. Modifications can also be made to the game, such as using a larger ball, using a beach ball and reducing the amount of time or points needed for a round.

Quality Time
No matter what your physical condition is you can have fun with your grandkids. Most grandkids are just thrilled that you are spending time with them. If you can't be out in the field playing baseball with them, go to one of their school or team games. Cheering them on and offering your support are both great ways to have fun with your grandkids.

Playing With the Grandkids
Staying mentally and physically active is going to provide you with many extra years of good health and viability. Playing with your grandkids is one way that you can stay active. This option not only strengthens your mind and body, but it also strengthens your relationship with your grandkids.

Leading a Balanced Life for Families of Children with Disabilities

Mon, 05 May 2008 21:00:00 GMT

The balancing act of keeping a busy family with special needs on track through school, therapy, doctors’ visits, and fun can feel like walking a tightrope during a hurricane. Parents are under exceptional pressure to maximize their children’s early years, which are thought to hold the greatest potential for rehabilitation and skill development.

Families of typical children are overwhelmed by today’s jam-packed schedules, but the addition of daily disability-specific demands especially requires parents and children to master the art of organization. By staying focused on priorities, tapping into resources for planning, and supporting each other with communication, families can successfully lead well-balanced lives.

There is no single solution to managing these hectic times, but providing a structured lifestyle can improve efficiency and relationships in the home. Children and parents benefit psychologically from predictability that allows everyone to play a role in accomplishing important household tasks. Knowing what to expect allows children to build confidence as they master routines.

More than 50 years of research confirms that even infants and preschoolers are healthier and exhibit better behavior when provided the security of routines. With decreased stress, family members of all ages can reap the benefits of a more relaxed home. The underlying message of setting and following a schedule as a unified group sends an important message: We are a family that works, learns, and plays together.

Implementing effective routines for children with disabilities requires parents to consider the 3 Cs: creativity, consistency, and commitment. Getting dressed, loading the car, and eating meals can take substantially more time for children with disabilities. Parents must integrate flexibility into family schedules to offer structure flavored with opportunities to practice independence. Traditional time allowances might not work for your family, but children can learn valuable benefits of teamwork and planning ahead to meet their goals. It’s never too late or too early to establish routines in the home, but many parents struggle with the challenge of consistency when calling order to the home.

Planning family schedules together and posting age-appropriate versions of routines allows everyone to present a united front against the unnerving prospect of chaos. Once structure has prevailed, allow at least a week before tweaking scheduling details. Children with disabilities and their parents can use their well-practiced skills of adaptation to convert readily available organization tools to meet more unique needs:

• Create a launching pad by the front door. Portable containers can corral medical equipment, backpacks, and medications for smooth transitions to and from the family vehicle.

• Inject fun and motivation for independence into activities of daily living by keeping kitchen timers near areas where children dress, put on prosthetics, or brush their teeth. Chart children individually to encourage improved efficiency and productivity.

A commitment to achieve structure in the home is the most essential key to unlocking the benefits of organization for the entire family. Too often parents are initially overwhelmed with the process of implementing a schedule, and routines fall by the wayside. With flexible diligence, parents of children with disabilities can lead families through the hectic hurricane of expectations to the realization of a fulfilling and well-balanced life.

Download and personalize this sample schedule to meet the unique needs of your family.

Photo by: Anotonio Omar Pinate

Education and Disability Acts Yield Positive Impact

Thu, 01 May 2008 20:30:00 GMT

In February 2008, the National Council on Disability (NCD) released a report analyzing the progress of the No Child Left Behind (NCLB) Act and the Individuals with Disabilities Education Act (IDEA) that indicates students with disabilities are no longer ignored. Put simply, that means NCLB and IDEA have had a significant and positive impact.

According to NCD Chairperson John R. Vaughn, "Thanks to NCLB, with its push for improved student outcomes, as well as the IDEA, educators across the United States are reexamining their practices to find ways to close the achievement gaps between groups of students. Students with disabilities are a focus of this attention as schools and states work hard to improve their academic outcomes. Policymakers are studying the ongoing implementation of both NCLB and IDEA to determine the most effective means for serving students with disabilities."

NCD commissioned the study, entitled “The No Child Left Behind Act” and “The Individuals with Disabilities Education Act: A Progress Report,” to assist policy leaders and stakeholders in assessing the impact of NCLB and IDEA on schools, including student outcomes produced as a result of changes mandated in the laws. This report provides a detailed analysis of such key questions as: (a) How has student achievement status changed since the laws were (re)authorized? (b) What impact have the laws had on assessment systems, accountability systems, and systems of personnel development? And (c) Which barriers are impeding the achievement of students with disabilities, and how can those barriers be overcome?

"In our evaluation of NCLB and IDEA, students with disabilities appear to be doing better academically, and they also appear to be graduating with diplomas and certificates at higher rates than in prior years. Data suggests, however, that there is still cause for concern about the dropout levels of students with disabilities nationwide. Regardless of whether that concern is definitional or real, we need a better understanding of the manifestations of new rules and regulations on these students. According to our analyses, one of the most important results of NCLB and IDEA appears to be that students with disabilities are no longer ignored. To that end, NCLB and IDEA have had a significant, positive impact. Teachers, administrators, and the community are becoming aware of what students with disabilities are capable of achieving if they are held to the same high standards and expectations as their peers," Vaughn stated.

"It is also important to provide flexibility with regard to student performance while holding on to the idea of meeting a high standard. High expectations with differentiated learning and instruction should be the twin foundations for the law. We are confident that the nation can continue to fight against low expectations for students with disabilities, and can continue to win," Vaughn concluded.

NCD is an independent federal agency and is composed of 15 members appointed by the President, by and with the advice and consent of the Senate. NCD provides advice to the President, Congress, and executive branch agencies to promote policies, programs, practices, and procedures that: (A) guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and (B) empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.