Mormon Life - Disabilities tag

Church’s Disabilities Website Released in Nine Additional Languages

Fri, 23 Mar 2012 09:11:00 -0600

source: news.lds.org

When lds.org/disability first launched in 2007 in English, it brought together information that had previously been scattered across handbooks, manuals, and other websites, making helps and ideas more accessible in a central location.

Now, during 2012, those resources (which include information about 10 different categories of disabilities and a variety of other helps) are being made available in nine additional languages: Chinese, French, German, Italian, Japanese, Korean, Portuguese, Russian, and Spanish.

Many hands help with not-so-typical baptism

Mon, 19 Mar 2012 10:23:00 -0600

source: deseretnews.com

Mormon Life says: I absolutely love this. It took nine priesthood holders, each dressed in white, as well as several others on the side, to help a man who uses a wheelchair enter a special pool on Sunday to baptize his disabled roommate.

Clifton Russell Jr., 57, is an elder in the Lincoln Ward, Washington Tacoma Stake, of The Church of Jesus Christ of Latter-day Saints, who used to work in the Bremerton, Wash., naval shipyard. He progressively lost both legs below the knees to diabetes during the past 15 years, started dialysis in 2006. Six months ago, he also lost his eyesight.

Though he spends most of his waking hours in a wheelchair, his disabilities have not prevented him from helping spread his broad smile and loving spirit to everyone he meets.

Young Church Service Missionaries: Elder Wyatt

Mon, 12 Mar 2012 10:13:00 -0600

source: radio.lds.org

Mormon Life says: Love this video. What an incredible young man (and family).

Primary: 'Every child is precious'

Tue, 06 Mar 2012 12:27:00 -0700

source: ldschurchnews.com

Every child is precious and every child is capable of feeling the Spirit. It is as Joseph Smith said, "All the minds and spirits that God ever sent into the world are susceptible of enlargement" (Teachings of the Prophet Joseph Smith, p. 354).

Primary leaders are learning to make accommodations and adaptations for children with disabilities in their wards and branches, creating a welcoming atmosphere that allows these unique children to be included in classes, sharing time and activities where they can grow in the gospel along with their peers. Not only are children with disabilities blessed by these efforts, but also families are strengthened and additional blessings are realized by the children, teachers and leaders who love and serve with these children.

Made with LOVE

Thu, 12 Jan 2012 04:29:00 -0700

source: youtube.com

Mormon Life says: A beautiful story of how one BYU grad student has worked with special-ed students to develop marketable skills THEY want to develop - and how they have risen to her high expectations.

Meeting the Need: Helping Children with Developmental Disabilities in Primary

Tue, 03 Jan 2012 00:04:00 -0700

by Julie Christensen
source: MormonLife.com

Mormon Life says: Children with disabilities can be found in every Primary. How can we meet the needs of all the children in our ranks? Here are a few resources, with insight from those with experience, for members looking to help.

Sundays at the Staples’ home were anything but restful. As soon as 6-year-old Jon realized it was Sunday, the crying, tantrums, and pleading started. During Sacrament Meeting, Jon, who was recently diagnosed with a developmental disability, fidgeted and squirmed. At Primary, he rocked back and forth, swung his feet, poked his friends, or got up and walked around. Occasionally, he became so frustrated that he had meltdowns or lashed out at friends and teachers. The Primary leaders and teachers were patient and loving, but they wondered how to help Jon while still meeting the needs of the other children in their large Primary. Heather Staples, Jon’s mom, recalls, “By Sunday night, we were exhausted and discouraged.”

Most LDS parents have experienced some of these feelings after a long day of trying to help children be reverent at church. Sundays are particularly challenging, though, for parents of a child who has a developmental disability. For children like Jon, Sunday is often the most difficult day of the week.

Many children with developmental disabilities have difficulty sitting still for more than a few minutes. Primary lessons may lack the visual cues or stimulation needed to keep a child who has autism or attention deficit disorder engaged. Small, overcrowded classrooms are often overwhelming to a child with a sensory processing disorder. Primary teachers and leaders may lack the necessary knowledge and skills to deal effectively with these children.

Yet, meeting the needs of all children must be the first goal of any Primary. Seek for understanding first, and then actively look for solutions. Consult parents, priesthood leaders and church disability resources for information and support.

Observe the Child

Become aware of all the children in your Primary. On average, between 12 and 17 percent of the children in a ward Primary may have some type of disability, according to lds.org. Disabilities that display physical symptoms, such as Down’s syndrome or cerebral palsy, are fairly obvious, but identifying and meeting the needs of children with developmental disabilities is more difficult. These children are often labeled as “naughty” or “difficult” and may not receive the help they need.

Objectively observe a child who is struggling. Take note of the child’s preferences, as well as situations that seem to trigger challenging behaviors. Try to see the world through the child’s eyes and gain an understanding of what motivates behavior.

For example, a child with a learning disability may be disruptive in an effort to hide the fact that he can’t read. A child with a sensory processing disorder may seem withdrawn, or, conversely, may continually touch his friends as a way to master his environment.

Communicate with Parents

Schedule a time to talk privately with the parents. Express your love for the child and your desire for the child to be happy and successful in Primary. Describe the behaviors you have observed, and ask for the parents’ input in finding effective solutions.

Leaders often feel nervous about approaching a parent or worry that they will offend the parent. Parents may initially respond with defensiveness but will appreciate your sincere expressions of love and a desire to help. Many children with developmental disabilities and behavioral disorders aren’t diagnosed until age five or older; Parents may be struggling to find information and help, just as you are. Together, though, and with the inspiration of the Lord, you can implement changes that will benefit the child.

Heather Staples met with her ward Primary president to uncover possible reasons why Jon was so unhappy in Primary. As the Primary presidency spent more time observing Jon, they noticed that he had no friends. The Primary president said, “We can start by fixing that.”

Jon’s primary teacher made a concerted effort to develop a relationship with him and help him form friendships with the other children. Although Jon still finds Primary challenging, he no longer dreads Sundays.

Strengthen Relationships

All children respond positively when they feel loved and accepted. Seek to develop genuine love and appreciation for each child in the Primary. A child with a behavioral disorder or developmental disability may not always be able to control his behavior. However, when she feels loved, she is more motivated to try. A child who feels disapproval or disdain from others will likely become discouraged and give up.

Visit the child at her home or invite her to your house with a classmate to make cookies or play a game. Help her develop strategies to relate to the other children.

Make a Plan

In partnership with the child’s parents, develop a plan based on the child’s strengths and needs. Think creatively and be willing to make adaptations to the schedule and lessons. For example, if a child has trouble sitting through sharing time, allow him to come a few minutes late. Go for a walk or provide some physical outlet. If a child seems overwhelmed by the noise of a large group, allow him to wear headphones.

Experienced teachers know that a productive, effective lesson time is the result of careful planning. The following strategies can help not only children with special needs, but all Primary children, participate more successfully.

Look for opportunities to utilize the child’s strengths. A child with a learning disability may not want to read aloud, but he may have a vivid imagination and love acting out stories. Shawna Hodges, whose son Grady has Down’s Syndrome, stresses the importance of making small efforts to help each child feel included. She says, “Children with special needs or disabilities have feelings like we all do. They want to be involved. Allowing them to hold a photo or pass something out or answer a question will build their self-esteem and help them to really know that they are a part of the group.”

Maintain a predictable schedule, and give advance warning of schedule changes. Many children with special needs have difficulty with transitions. A predictable schedule helps them feel safe and secure.

Prepare the classroom ahead of time. Put away extra chairs and keep the classroom uncluttered, since a cluttered space can be over stimulating. Bring small posters or pictures to make the classroom more inviting.

Use visuals, music and actions to engage children and keep their interest. Use the most active, hands-on method possible to teach a concept. For example, rather than just retelling a scripture story, bring pictures, props, or best of all, act the story out.

Provide variety. Although some repetition can help children master concepts, children become bored when the same game, song, or activity is repeated over and over. Plan for a new activity every 10 to 15 minutes, depending on the ages and needs of the children.

Making adaptations for a child with a developmental disability may seem like a lot of effort, but leaders and teachers who take on this challenge are richly rewarded. Primary leaders who effectively meet the needs of their most vulnerable children gain a greater understanding of Christ-like love, develop an increased capacity for empathy, and deepen their ability to effectively teach. Children with developmental disabilities often have unique and interesting perceptions of the world and can contribute in many ways to Primary.

Visit lds.org/disability for more information.

Autistic Boy Scout earns all 132 merit badges

Mon, 17 Oct 2011 12:41:00 -0600

source: MormonTimes.com

Mormon Life says: Even without the merit badges, he's an awesome kid. Nate Christensen seems like a typical almost-18-year-old boy. Now in his senior year at Bingham High School in South Jordan, he plays the trumpet in the marching band. He took a longtime friend to the school’s homecoming dance. He loves popular music artists from Justin Bieber to Owl City. He enjoys playing “Just Dance” on his family’s Nintendo Wii and writes a blog in his free time. He admits that his favorite class at school is his sports class.

But two things set him apart. One is that he’s earned 132 merit badges — every possible Boy Scout merit badge he could earn. The other is that Nate is autistic.

Nate's mother, Sandy Christensen, said that Nate tests somewhere in the middle of the autism spectrum. One wouldn’t easily guess that when talking to him.

The Priesthood and the Disabled

Mon, 01 Aug 2011 12:35:00 -0600

source: millennialstar.org

Mormon Life says: A touching look at something remarkable that many of us have witnessed. Picture in your mind, and it shouldn’t take much imagination, a young boy participating in the priesthood function of the Sacrament. He lowers his head during the prayers and then gleefully hands out the water and bread to the congregation. Just like what happens every Sunday, he returns to the cloth covered table and sets down the silver trays he passed around the room. There is nothing unusual about the actions.

What is relatively different is the boy. He is far from unable to perform normal tasks, but his mental capacity is abnormally limited. During any other time he won’t sit still without trying to talk to whoever will lend him an ear. Despite his age, his thoughts and actions are far closer to a person younger than Priesthood age. Often he has to be kindly reminded his behavior is not appropriate, although lacking any serious disruptive nature.

Young Women Lesson 49: Valuing and Encouraging People with Disabilities

Fri, 17 Dec 2010 00:03:00 -0700

source: MormonLife.com

Mormon Life says: Jesus Christ is our greatest example. He was surrounded by multitudes and spoke to thousands, yet He always had concern for the one. Discussion Questions

What character traits or skills do I have or need that will help me serve those with disabilities?
What could I do to help someone with a disability feel useful and needed, appreciated and wanted?
What have I learned from those who have disabilities?

Concern for the One

... I remember when I was young, there was an older boy who was physically and mentally disabled. He had a speech impediment and walked with difficulty. The boys used to make fun of him. They teased and taunted him until sometimes he would cry.

I can still hear his voice: “You’re not kind to me,” he said. And still they would ridicule him, push him, and make jokes about him.

One day I could bear it no longer. Although I was only seven years old, the Lord gave me the courage to stand up to my friends.

“Don’t touch him,” I said to them. “Stop teasing him. Be kind. He is a child of God!”
My friends stepped back and turned away.

I wondered at the time if my boldness would jeopardize my relationship with them. But the opposite happened. From that day onward, my friends and I became closer. They showed increased compassion for the boy. They became better human beings. To my knowledge, they never taunted him again.

Brothers and sisters, if only we had more compassion for those who are different from us, it would lighten many of the problems and sorrows in the world today. It would certainly make our families and the Church a more hallowed and heavenly place.

*To read the full article, click here.

Dealing with Difference

Mon, 14 Sep 2009 18:00:00 -0600

by Leisha Maw
source: MormonLife.com

Mormon Life says: As a mother of two disabled children, I have learned that most people want to include those of differing abilities, but they don’t know how. Here are some suggestions to help put everyone at ease. I pushed the cart through the crowded aisles, shaking my head at the squeaking whine coming from the left front wheel. All around me people turned to stare. I pasted on a smile and tried to convince myself they were staring at the anguished grocery cart, but I knew - they were staring at my children.

My two boys were crying, tears streaming down their red faces like the first trickle of a dam about to burst. There was too much stimulation in grocery stores. Too many noises, smells, sights, and people.

I pushed my whining cart and weeping children more quickly so we could get the most necessary items on my list before they had a complete meltdown. I knew it was coming. Soon.

We didn't make it. I abandoned my cart, my groceries, and my pride in the middle of the checkout line when a woman asked, "What is wrong with your children?" Perhaps she had never seen a six- and four-year-old throw a synchronized tantrum.

I have to admit, it was a good one, complete with head-banging. The other shoppers were lucky I didn't start screaming as well. I wanted to - that or cry - as I carried both my rather large children out to the car, one under each arm. In fact, I did cry. I sobbed all the way home.

A Kinder Way

Most parents, at one time or another, have had the dubious opportunity of accompanying a screaming toddler through a checkout stand, or fielding the curious looks thrown their way when their children misbehave in public. For me, it isn't an occasional episode to be laughed about over dinner later that night - it is an ever-present threat.

I am the mother of two disabled children. This sets me apart from most mothers. It can distance me from the comfortable playground chatter, the proud comparing at the doctor's office, and the friendly waves in line at the store. Other parents may want to include me, but they don't know how to bridge the gulf that separates our lives.

Many try, but awkwardness usually results. One of the most common attempts to span the gap is that question - "What is wrong with your child?" Most of the time this is a well-meant, uncertain query intended to bring my world and theirs together. Occasionally it feels like a cold condemnation implying that my parenting is somehow responsible for my children's behavior.

I also abhor the word wrong. It is a word that should never be applied to children, especially if they are present. No child should have to hear his or her parent confirm that something is wrong.

Several years ago a woman who worked at my children's school taught me a kinder way to broach the subject. As she approached me, I recognized the curiosity in her eyes and braced myself for that question.

But what actually happened with this woman surprised me.

The woman simply smiled warmly and said, "Tell me about your boys." It took me a moment to respond. Frankly, I was overcome with relief. This had never happened before. I had grown so accustomed to defending my children that I hadn't realized how desperate I was to talk about them.

Almost all parents enjoy talking about their children. They yearn to brag about a new accomplishment or complain about a messy room. I did, too. And now, like a gift, this woman had given me the opportunity to do so with no strings attached.

I love that woman. I don't know where she is now, but I love her because she opened a door to my soul. She gave me the opportunity to share my joy and concern for my little ones without having to defend them.

When To Ask about Disabled Children

There are three groups of people: strangers; acquaintances and co-workers; and close friends, family, and professionals who work with children.

While I'd like to think that the woman in the grocery store meant the best and only wanted to help, as a stranger, she had no vested interest in my family. It was inappropriate for her to inquire about my children in such a manner. Strangers shouldn't ask. If you see someone with disabled children, treat them exactly the same as you would anyone else. Kindly curb your curiosity, and keep the conversation light and neutral.

When you are acquainted with a child with disabilities or his or her parents, you do have a vested interest in them. It is natural to feel concern for the family. Asking about the disability in a polite, caring, non-threatening manner, at an appropriate time, shows genuine interest in your friend or co-worker.

If you are a close friend, family member, or professional to someone with disabled children, you hold a unique position. You are part of their support system. The more you know about the disability, the better you can help them. Seek out reliable information about the disability from the Internet and books. Sincerely ask how the family is doing. Show an interest in their lives, but be sensitive to the grief the parents may be experiencing, and let them grieve. Be perceptive, understanding, and patient.

Addressing the Disability

People generally respond in one of two ways when encountering those with disabilities: they stare at or they overlook the individual. The latter is a common and understandable reaction stemming from a desire to not offend. While I understand this, ignoring a person with a disability is as offensive as saying the wrong thing. When dealing with individuals with disabilities, ignore the disability, not the person. Meet their eyes; don't pretend they don't exist.

A good example of this is my dear friend Melissa. She has dedicated her life to teaching children with severe disabilities. To her they aren't different; they are simply children with distinct personalities, interests, and talents. She tempers her expectations to the unique abilities of each child, but treats them like everyone else. She has learned to see past the disability to the child. She focuses on what they can do. That, I think, is the secret.

In learning to approach and interact with those who struggle with outward differences, we must recognize that inwardly, we are all the same. When we focus on what we have in common, the disabilities fade to the background, leaving only the person and all their glorious abilities.

Gaining the Appropriate Skills

I have learned that most people do want to include those of differing abilities, but they lack the knowledge of how to approach either the individuals themselves, or, as in my case, the parents. This lack of experience leads to uncomfortable, even painful encounters. You will need practice in ignoring the disability and focusing on the individual. Being aware of your actions and attitude is the first step.

But inclusion is a partnership that works only if both parties are trying. Parents share in the responsibility of assimilating their children into society, which I recognize with my boys. It has taken me years to school my feelings and reactions. I have learned to see the intent behind the overture.

As you strive to perfect your skills, keep in mind that every parent of a child with a disability has bad days. Sometimes even the most carefully worded, genuine inquiry may be met with tears or anger. Remember, they are learning, too; it takes a lot of practice to face the world with a cheerful heart when your most prized possession, your child, is hurting.

Be courageous as you meet and befriend people with disabilities and their families. Never forget that your words and actions have immense power; carefully craft them to avoid injury. Always think of how your message could be received. Be friendly, genuine, and honest, and you will be remembered for enriching lives.

I will always be grateful to the many dear friends, family, and professionals who treat me and my family as equals and grant us the blessing of acceptance - this, along with abundant blessings from above, fills my heart with hope.

Dos and Don'ts Do

Say hello Smile Be friendly Treat disabled people like everyone else Act naturally Make eye contact Be genuine Ask appropriate questions Teach your children how to ask appropriate questions Include the disabled

Don't

Point Stare Laugh Ask what is "wrong" Ignore Avoid Whisper Label people with disabilities as "special" Say you understand Joke about the disability

Autism in Our Primary

Mon, 31 Aug 2009 18:00:00 -0600

by Wendy Green
source: MormonLife.com

Mormon Life says: Working with autistic children in a church setting, when you may not be trained in how to work with the disability, can be a great challenge. But with patience, the right attitude, and some essential tools, it can be a tremendous blessing. "A new family is moving into our ward!" This statement always brought an air of joy and excitement to our small congregation. Our Primary wasn't very big, so the thought of more children and potential leadership help was pretty exciting.

During the next meeting, *Brother Johnson, an older member of our ward, shared information about the new family - his family. The husband, Chad, was Brother Johnson's son. Chad and his wife, Anne, had five children. The family was wonderful, Brother Johnson explained, but a few of the children had special needs. One boy was autistic and two other children had Asperger's syndrome. I wondered, what this would mean to our ward, to our Primary. Because our ward is very kind, I knew the next question most people would ask was, "What can we do to help?"

Brother Johnson asked for our patience and understanding as a ward. He explained that his son's family was amazing, though the children could be a challenge. What an understatement that turned out to be!

The Johnson family's first Sunday in sacrament meeting was rough. Their six-year-old son, Gavin, had the hardest time. He made a lot of loud noises, slapped his legs and yelled whenever his mother tried to correct him. His little sister and older brother also caused a commotion. The congregation tried to ignore the distractions, but it was difficult to disregard the loud outbursts from the back of the room.

Primary was worse. Gavin jumped from chair to chair and talked so loudly that whoever was speaking would have to stop until Gavin could be quieted. The older primary children tried to ignore his behavior while the younger ones kept asking why Gavin acted as he did.

The next Sunday, Anne took a few minutes during Sharing Time and explained autism to the children using terms they could easily understand. She talked about the different way Gavin's brain functioned compared to a regular person. Anne explained the noises he made and the leg slapping as the ways his brain made sure he was okay. This helped both the children and the teachers understand more about him. From that point on, the kids were much more accepting of Gavin and more tolerant of his behavior.

Some of the adults in our ward weren't as accepting. I learned that more than one person had complained about the children's disruptive behavior; one woman even said she might stop attending our ward.

My heart went out to Gavin's family. The family itself struggled, partly because Chad also had Asperger's and struggled with his roles as father and provider. I knew that the other auxiliaries were involved with helping the family, so I decided to focus my efforts on helping Gavin.

I was nervous about offering to help because I didn't know much about autism. But I was willing to learn. I approached our Primary President and said, "I'd be happy to sit with Gavin during Sharing Time." A look of relief swept over her face. From that point on, my unofficial calling was to be Gavin's friend, and I learned as much from it as I have from any other calling.

Be patient.

The first Sunday, Gavin wouldn't talk to me or look me in the eye. I had to corral him just like the secretary had before. I had to block the cabinet doors to prevent his climbing in them, and gently lift him off the chairs he jumped across every week.

I tried to keep my voice calm and offered positive statements like, "Let's keep our feet on the floor," and "Chairs are for sitting." I refrained from scolding him or telling him what not to do. After making the same statements in a calm voice, carefully setting him back in his seat, and modeling appropriate behavior, Gavin began improving and his outbursts lessened.

Keep it simple.

With my children, I often gave detailed instructions with accompanying explanations. I'd say things like, "Please don't climb on the furniture. It isn't polite, it makes the furniture dirty, and you could get hurt." I found Gavin responded better to simple gestures like shaking my head when he did something wrong or clucking my tongue to get his attention instead of repeating his name over and over. Also, using simple phrases like "feet down" to remind him not to kick chairs yielded a better result than lengthy requests.

Be genuine and specific with praise.

Children are perceptive and can tell when praise is patronizing. I made sure to praise Gavin when I noticed him trying to follow instructions. "Thank you for remembering to use a soft voice," brought a bigger smile than, "Thanks for being good."

Gavin was also a very talented artist and would draw amazingly realistic pictures for his age. A specific comment like, "Your dinosaur has super sharp teeth" showed I was really looking at his work more than statements like, "That's nice," or "Good job."

Create predictability.

We went through a ritual each Sunday. It started when I saw Gavin in primary; he would look me in the eye and say, "You're Wendy. You have green eyes." Then we would enjoy our time together drawing, whispering, and quietly playing with the stuff from my "church bag" in the back of the Primary room.

Gavin had favorite items that I was sure to bring in the bag every Sunday: farm sticker books, crayons, Legos, and Smarties. He'd take careful inventory of my bag each week to be certain nothing was missing. One Sunday I left a particular book he liked at home, and he threw a kicking fit on the floor. I learned quickly to maintain a consistent inventory.

Be consistent and reliable.

Along the same lines as creating predictability, make sure you yourself are consistent when working with special needs children. If I was late to Primary, Gavin's screams of, "Where's Wendy? I want Wendy!" would echo down the hall. I learned that to keep the peace, I really needed to be on time.

One Sunday, I went to a baby blessing at a different ward. I'd found a great substitute to be with Gavin and made sure she had "the bag." I shared a few of the tricks I'd learned to help Gavin manage his behavior. I thought as long as she knew the routine and had the all-important bag, Gavin would be fine.

I was wrong. Gavin threw so many fits that the primary president had to have his mother Anne come and take him.

Occasionally you may need to change the schedule, but make sure to account for the repercussions when you do. In my case, notifying Gavin's mother and Gavin himself and making arrangements more fitting to his needs might have ended better.

Love the spirit within.

Over the course of our time together, Gavin and I had become friends. I thought our key to success was the toys and candy I brought, but after the problems that resulted when I wasn't there, I learned my presence meant something.

The week after I missed primary, Gavin ran up to greet me. He climbed onto a chair so he could stand eye-level with me. He'd never touched me before, so I was surprised when he gently placed his hands on my cheeks. He looked me in the eyes and said softly, "You're Wendy. You have green eyes." This time, he added, "I missed you." Then he gave me a big hug - the first hug he ever gave me.

It also turned out to be the last hug we ever shared. Gavin's family situation had worsened, and the next week Anne unexpectedly took the children and moved.

It's been a few years since I've seen Gavin, and I still miss him. Working with him was a challenge, but it was also a tremendous blessing. He taught me patience. It was a different kind of patience than I'd learned from dealing with my own children, a more thorough patience discovered through kindness, compassion, effort, and understanding.

Several months after Gavin had moved, my six-year-old asked, "Do you miss Gavin?" I answered that I did. He asked, "Did you love Gavin?" I answered that I most certainly did. "I already knew that," he said before running off to play.

I'm glad my son knew how I felt about Gavin. I hope Gavin knew I loved him then, and I hope he still knows it now.

*Names have been changed.

It Was Claire's Life

Mon, 28 Oct 2002 08:25:00 -0700

by Marianne Jennings
source: MormonLife.com

Mormon Life says: On a seemingly normal February day, the perfect storm arrived. The storm consisted of influenza. A fever, pneumonia, and a wheezing episode- all merged in the lungs of our severely disabled daughter. There are no forecasting methodologies or advance warning systems for such pulmonary disasters, so paramedics broke suburbia's monotony with the lights and sirens of a Code 3 ambulance trip to our home. Being the parent of a medically fragile child means coping with the unnatural reality that your child will likely leave this life before you do. Doctors feel compelled to discuss this defiance of chronological order. I call these Hippocratic insights "The Death Lectures."

The neurologist's death lecture in December was particularly harsh, for it featured a bell curve. "Claire," he explained, "has lived years beyond her life expectancy. You can't expect to have her much longer." Ah, the stuff of dreams. In addition to the death lectures, we've long grappled with what we thought was our selfishness in wanting Claire here with us.

Her life is one filled with indignities, the pain of an uncontrollable seizure disorder, endless medications, and painful stares from outsiders. She had charmed us from the moment of her birth, and we didn't want to lose the anchor of our lives. She has been our touchstone, a check on priorities.

But, feeling that we were her will to live and that- left to her own devices- she would choose to be free from the shackles of a body that has never been whole, we signed a "No Code" order. This is a lawyerly document that forbids use of extraordinary efforts to keep Claire alive. Claire's "No Code" specified: no intubation.

Three of us now battled in that emergency room: Claire, the perfect lung storm, and I. Her heart rate was 230, her temperature hovered near 105, and her oxygen "sats," as the ER crowd says, were at 80 despite the 100% oxygen she was breathing. She was slipping away. A doctor, who seemed to be about 12, told me so.

He gave me an ultimatum, with minutes to decide whether the "No Code" held. I needed a little help with life and death, and tried to reach my husband. The caller ID at home registered the ER phone as "unavailable," and my young son, enamored of telling off telemarketers, was doing what he had been taught to do: Answer, "Please put us on your 'No call' list," and hang up. He did so five times. Home communication lines were down, foiled by hawkers of time-sharing RV resorts and vegetable choppers.

Alone, I cuddled Claire, searching for an answer. Her struggle was a mother's nightmare. The only justification I could muster was that it wasn't right for her to leave us on a Thursday evening! I'm not sure what evening would be right, but Thursdays were out. I needed something to confirm: No "No Codes" on Thursdays.

Then a little tear drifted down Claire's right cheek. She hasn't shed a tear since she was eighteen months old. Fourteen tearless years through unimaginable pain. Now came a tear of sadness. I had my sign and my answer from a child who has never spoken.

I called in the 12-year-old resident and asked if Claire's perfect storm was reversible. His wisdom bellied his young years. "We’ll never know of we don't try."

It was not my decision to make. It was Claire's. Claire's life. Claire's choice. I gave the young doc the American thumbs up, "let's roll." I stood to one corner and watched the intubation. Its very violence made me quiver and doubt. That thin, tiny body with porcelain skin convulsed. That moment still flashes through my mind and I experience the same weak legs and heavy heart I felt then.

But the perfect storm met the perfect response. She battled her way back from the brink. Claire, the outlier, defied the odds. Foolish doctors! She has no bell curve. Claire will live her life on her own terms. She wields power on its length.

As she fought and I sat helplessly by, eventually matching my breaths with those of her respirator, I had an epiphany. Claire's life has meaning and purpose, and she knows it. She brings out the very best in every life she touches. Through her, I saw the compassion and dedication of the doctors, nurses, and therapists at Phoenix Children's Hospital who fought as hard as Claire did. Claire showed me the selflessness of a sister who took over my children for that week. My daily conversations with my parents about Claire had a spirituality I shall cherish forever. Claire allowed me to see my colleagues, who stepped up to cover for me, in a whole new light. From deans to staff, they helped and they cared. Claire showed us neighbors putting out our trash as we coped at the hospital. Claire's teachers, school nurses, school staff, and bus drivers were with us. There were so many prayers for this being, far too tiny for her fifteen years; their power was felt in her hospital room.

Decisions about life and death are not ours to make. They are made by a higher Authority who works for the good of the whole, and who knew the good the whole can show. Yielding to the power and wisdom of that higher source is the humbling lesson of Claire's life. And she knows it. Finally, her mother knows it, too.