My Child is Ill Archives 2009

Alexander was 16 years old when he became my student. Wheelchair bound with a severe case of cerebral palsy, he was functioning at an 18 to 24 month level. His school program 'had not worked out', I was told, so depite his age, Alexander came to be in my classroom. I was assured that he would be no trouble, that he would just sit quietly in his chair and do nothing at all. I did my best to prepare my class of thirty 5 and 6 year olds for Alexander's arrival.  We talked about his disabilities, his wheelchair and the fact that he could not talk. We read stories about children with handicapping conditions and tried to find the common ground that might exist between this 16-year-old boy in a wheelchair and my children. The first day Alexander was wheeled into my room, most of my children were ready. Although they stared, they tried to smile and did not seem stressed by Alexander's presence. However, one little girl ran crying and hid in the back of the room. After much comforting, she was able to join the group but she avoided being anywhere near Alexander. At first, Alexander did sit quietly wherever we put him. He did not move, he rarely vocalized, and he did not look at anyone or anything. He was, for all intents and purposes, not really there. Then one day, I noticed that Alexander had begun tracking the children's movements with his eyes as they crossed in front of his chair. I found out he had never been in a group situation with such young children before and I wondered if the activity level of the 5 and 6 year olds in my room had stimulated some part of his brain that had previously gone unstimulated.  We moved Alexander out from his corner and put him right in the middle of the room. The tracking behavior increased. Soon he began to move his head to try to follow the children's movements. Not long after that, he began to vocalize more frequently. Then his vocalizations seemed to take on a pattern. One day, one of my girls approached me and said that she thought Alexander wanted to draw. I watched him as he sat in the art center and it did seem as though he was interested in the drawing activities going on there. So we rigged a board up to his wheelchair and taped a large crayon to his hand. Alexander drew! He scribbled all over that paper! When he seemed done, I took the paper from him and told him how wonderful I thought it was. Suddenly he vocalized loudly and threw both arms up in the air. It was hug time, and hug we did! From that day on, Alexander blossomed. He seemed to like being in the center of the hubbub as the children moved around him. He vocalized a lot, and loudly too! He smiled and even seemed to laugh. The children became his coaches and his most enthusiastic cheerleaders. The day that Alexander suddenly tried to move his wheelchair on his own, I almost lost control of my classroom as we jubilantly celebrated. From that day forward, Alexander was unstoppable. We rearranged the room to make it easier for him to maneuver his way from one center to another. The children learned how to push his wheelchair, as he was not strong enough to move it very far on his own. As Alexander blossomed, my children blossomed too. They learned that they were capable and creative and kind and strong and tolerant and a million other things as they helped Alexander throughout the day. Alexander became my best buddy. He would enter the building, and as he passed the front desk, the receptionist would say, “Are you going to see Ms. Jeanie, Alexander?” His vocalizations as he reacted to that question could be heard all the way down the hall to my room. The children would look up from their activities and say “Alexander's here, Ms. Jeanie”. When Alexander entered our room he threw up his arms for a big hug every day. One day, we were all out on our large playground. Alexander was, I thought, safe under the porch overhang occupied with the large blocks we had put out for him. Suddenly I heard a loud scream. You know how children have different kinds of screams? This one was the “come right now before someone dies” scream, and I went running in the direction of the sound. I was amazed by what I saw. Alexander had managed to, on his own, maneuver his wheelchair out from under the overhang and onto the sidewalk that circled our play equipment. He had started to fall off the sidewalk into the sand, the only thing preventing him from going over, face first, into the sand was this: Phillip had seen Alexander wheeling around on his own. He had seen him start to fall off the sidewalk so he grabbed on to the wheelchairs handles and tried to pull Alexander back. Alexander was heavy, and he was stimulated by this new situation so he was waving his hands around like crazy. His weight and hand movements were causing the chair to tip forward toward the sand. This caused Phillip's feet to leave the ground as he hung from the back of the chair, legs flailing, screaming his head off. He was the counterweight keeping Alexander from being tumbled out into the sand. I pulled them both back and made sure both boys were okay. Then we all just burst out laughing, including Alexander. From that day on, a child stayed with Alexander at all times to make sure he remained safe as he wheeled himself around the sidewalk. Yes, the children took care of him. They were capable, they were able and more importantly, they cared. Alexander stayed with us for nine wonderful months, and then his family moved from the area. We learned so much from him during that time, and we saw that he was learning too. No huge miracles--he did not suddenly just start walking and talking. However, small miracles happened every day as Alexander became more aware of his surroundings and began to interact with his environment. He did more in those nine months than he had ever done before. The day he left us we all cried. That little girl who ran crying the first day Alexander arrived soon became accustomed to him, then befriended him and, after that, was one of the first to volunteer to push his wheelchair around the room. You could always find her leaning over the arm of Alexander's wheelchair as she showed him a new toy or book. Alexander taught her tolerance and kindness; attributes she will carry with her the rest of her life.  by Jeanie Herrod http://www.lehman.cuny.edu/faculty/jfleitas/bandaides The American Heart Association says that nearly twice as many children die each year from congenital heart defects as die from all forms of childhood cancers combined! Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths. About 40,000 infants are born with heart defects each year in the United States. Congenital heart defects are the most common group of birth defects, occurring in approximately 8 in 1,000 newborns The defect may be so slight that the baby appears healthy for many years after birth, or so severe that his life is in immediate danger. There are many types of defects that may occur with congenital heart disease and a child may be born with one or several of these defects. In fact, some chidren may survive due to a second or third defect such as the case when a valve didn't develop and "holes in the heart" were formed that enable the blood to circulate through the heart. Some of the defects include: Defects in the valves: Stenosis (doesn't open completely), Atresia (didn't form), Regurgitation (doesn't close completely) Septal defects (holes in the heart between the upper and lower chambers) Heart muscle thickening. Underdeveloped aortas, ventricles (single ventricle). Defects, misplacement, transposition or obstructions in the main arteries; the aorta and pulmonary There can also be a combination of these defects in one indiviual. Other children may develop acquired heart disease, rather than being born with defects. This includes... Arrhythmias. The projected incidence estimate for supraventricular tachycardia alone is 1–4 per 1,000. Cardiomyopathies. Kawasaki disease. Rheumatic fever. Familial hypercholesterolemia will affect the future of an unknown but probably large number of children. Acquired immune deficiency syndrome (AIDS) with its myocarditis. It's Not Just Heart Disease Because more severe congenital heart disease prevents the heart from pumping efficiently and the normal circulation is disrupted, children will develop various medical problems that may or may not be heart related, but may be initially caused by a diseased heart. Also the surgeries and medications, themselves, may have adverse on the body and wreak havoc on the body. Other problems these children may have in their youth or as they grow into adulthood: Strokes, blood clots Heart attacks Right pulmonary vein compression/obstruction Organ disease such as the kidneys, liver, lungs, etc. Heart failure resulting in damage to other organs, breathlessness, fatigue, nausea. Skin problems due to poor circulation. Excess bleeding due to medication. Sleeplessness. Underweight or overweight due to excess fluid. Dry mouth, continual thirst due to medications. Dehydration due to heart failure. Gastrointestinal problems. Arrhythmias, heart block and various problems in the electrical system of the heart Difficulty breathing Protein Losing Enteropathy Cardiomyopathy Deterioration of the ventricle Pulmonary hypertension Feelings of anxiety or depression due to heart/brain connection or medication. Emotionally having to deal with the ups and downs of heart disease. Surgeries which bring their own present and future problems. Blood transfusions. Gallbladder problems. Inability to absorb nutrients well due to excess fluid in body. Venous problems due to slow circulation. Changes to blood such as lower platelets, overproduction of red blood cells Thyroid disease and various problems due to heart meds. Headaches. Virtually every part of the body may eventually be affected due to poor circulation and oxygenation of the body. Significant morbidity and mortality Heart Disease is on the Rise and It's a Blessing (Adult congenital heart disease, that is) Advances in diagnosis and surgical treatment have led to dramatic increases in survival for children with serious heart defects. In the United States, about 1.4 million children and adults live with congenital heart defects today. From 1994 to 2004 death rates for congenital cardiovascular defects declined 31.6  percent, while the actual number of deaths declined 25.4 percent; there are now more adults living with congenital heart disease than children.  . I found the following poems on a congenital heart group website; they were written by Tracey True, who passed away in 2001. My New Heart By Tracey True Take away my broken heart, please do what you can. Let me wake in the morning, to watch the sun hit the sky. Let me listen to the birds, as they fly on by. Let me wake to the new fallen dew, and give me the chance to do the things I want to. And at the end of each day, when all things are said and done, Let me watch it change from moon to sun. Take my broken heart, Please do what you can. As I Sit and Wait By Tracey True As I sit and wait, I wonder, who will have to die so I can live? As I sit and wait, I wonder, why does someone have to die so someone can live? As I sit and wait, I wonder, why? . A SPECIAL TRIBUTE TO ADULTS WITH CONGENITAL HEART DISEASE So much knowledge has been gained over the years and more babies and young children are surviving because of you; cardiologists and surgeons have learned what works and what doesn't work. Most of you, if any, have not received recognition from your doctors and are even pushed aside at times because the medical world was not prepared for your survival. But you did survive! Along with the doctors, you and those who have gone before you are pioneers of a new generation of hope. Thank you. Lung Injury from Second Hand Smoke CHICAGO, Nov. 26 /PRNewswire-USNewswire/ -- It's not a smoking gun, but it's smoking-related, and it's there in black-and-white images: evidence of microscopic structural damage deep in the lungs, caused by secondhand cigarette smoke. For the first time, researchers have identified lung injury to nonsmokers that was long suspected, but not previously detectable with medical imaging tools. The researchers suggest that their findings may strengthen public health efforts to restrict secondhand smoke. "We used a special type of magnetic resonance imaging to find these structural changes in the lungs," said study leader Chengbo Wang, Ph.D., a magnetic resonance physicist in the Department of Radiology at The Children's Hospital of Philadelphia. "Almost one-third of nonsmokers who had been exposed to secondhand cigarette smoke for a long time developed these structural changes." Formerly at the University of Virginia, Wang collaborated with radiology researchers at that institution, where they acquired the MRI images from adult smokers and nonsmokers. Wang presented the team's findings in Chicago at the annual meeting of the Radiological Society of North America. Although the participants in the research study were adults, Wang said the results have implications for the 35 percent of American children who live in homes where regular smoking occurs. The researchers studied 60 adults between ages 41 and 79, 45 of whom had never smoked. The 45 non-smokers were divided into groups with low and high exposure to secondhand smoke; the high-exposure subjects had lived with a smoker for at least 10 years, often during childhood. The 15 current or former smokers formed a positive control group. The research team prepared an isotope of helium called helium-3 by polarizing it to make it more visible in the MRI. Researchers diluted the helium in nitrogen and had research subjects inhale the mixture. Unlike ordinary MRIs, this MRI machine measured diffusion, the movement of helium atoms, over 1.5 seconds. The helium atoms moved a greater distance than in the lungs of normal subjects, indicating the presence of holes and expanded spaces within the alveoli, tiny sacs within the lungs. The researchers found that almost one-third of the non-smokers with high exposure to secondhand smoke had structural changes in their lungs similar to those found in the smokers. "We interpreted those changes as early signs of lung damage, representing very mild forms of emphysema," said Wang. Emphysema, a lung disease that is a major cause of death in the U.S., is commonly found in heavy smokers. The researchers also found a seemingly paradoxical result among two-thirds of the high-exposure group of non-smokers -- diffusion measurements that were lower than those found in the low-exposure group. Although these findings require more study, said Wang, they may reflect a narrowing in airways caused by early stages of another lung disease, chronic bronchitis. "To our knowledge, this is the first imaging study to find lung damage in non-smokers heavily exposed to secondhand smoke," said Wang. "We hope our work strengthens the efforts of legislators and policymakers to limit public exposure to secondhand smoke." http://www.chop.edu/consumer/index.jsp . Second Hand Smoke and Children's Health ETS (environmental tobacco smoke) is causally linked with a number of adverse health effects in children (under 18), including: lower respiratory tract infections (i.e. croup and pneumonia) increased fluid in the middle ear upper respiratory tract irritation reduced lung function additional episodes of asthma increased severity of asthmatic symptoms in children reduced oxygen flow to tissues, comparable to children with anemia, cyanotic heart disease or chronic lung disease A U.S. analysis of over 100 reports on pædiatric diseases concluded that children’s exposure to tobacco smoke is responsible for up to: 13% of ear infections 24% of tonsillectomies and adenoidectomies 26% of tympanostomy tube insertions 13% of asthma cases 16% of physician visits for cough 20% of all lung infections in children under 5 136-212 childhood deaths from lower respiratory infection 148 childhood deaths from fires started by tobacco products 1868-2708 SIDS deaths Impact of mothers' smoking on the fetus Maternal smoking can affect the fetus and the outcome of the pregnancy. Smoking deprives the fetus of needed oxygen and other nutrients. This may result in: deficits in intellectual ability and behavioral problems low birth weight or intra-uterine growth retardation spontaneous abortion (miscarriage) stillbirth reduced lung function in the baby · complications in pregnancy Why kids are especially vulnerable Young children are especially vulnerable to second-hand smoke in the home because: they breathe more air relative to body weight (and for the same level of exposure will absorb more tobacco smoke toxins) they are less able to complain (either because they are too young, or because their complaints are ignored) their immune system is less protective they are less able to remove themselves from exposure What's in second-hand smoke Tobacco smoke contains more than 4,000 substances, of which more than 40 are known to cause cancer. These carcinogens include: Arsenic, nickel, chromium, cadmium, lead, polonium-210, vinyl chloride, formaldehyde, benz(a)anthracene, benzo[b]fouoranthene, benzo[j]fluoranthene, benzo[k]fluoranthene,benzo[a]pyrene, chrysene, dibenz[a,h]anthracene, dibenzo[a,I]pyrene, dibenzo[a,l]pyrene, indeno [1,2,3-c,d]pyrene, 5-methylchrysene, quinoline, dibenz[a,h]acridine, dibenz[a,j]acridine, 7H-dibenzo[c,g]carbazole, N -nitrosodimethylamine, N -nitrosoethylmethylamine, N nitrosodiethylamine, N-nitrosopyrrolidine, N-nitrosodimethylamine, N -nitrosonornicotine, 4- (methylnitrosamino)-1-(3-pyridyl)-1-butanone, N’-nitrosoanabasine, N -nitrosomorpholine, 2-toluidine, 2-naphthylamine, 4-aminobiphenyl, acetaldehyde, crotonaldehyde, benzene, acrylonitrile, 1,1-dimethylhydrazine, 2-nitropropane, ethylcarbamate, hydrazine. Even if smoking is restricted to a single room, the harmful constituents of cigarette smoke can be dispersed throughout the house. Many of these highly dangerous chemicals are in invisible gas form. http://www.smoke-free.ca/default.htm  . Here's a lesson prepared for children by Janice Trees, a Christian who lives in west Texas. You can find information about her website in the right column of this page. On Teasing and Cruelty December 3, 2008 by Janice Trees Reading: Proverbs 26:18-22 Do you like telling jokes and riddles? I do! What is your favorite joke or riddle? Sometimes we like to tease one another with jokes and riddles. But we should never make fun of each other in order to hurt someone, or try to start fights for our particular enjoyment. It isn’t wise to stir up problems between others. Do you like feeling as if others are laughing at you? Do you like feeling as if everyone is against you? Today’s verses in Proverbs talk about this particular kind of foolishness, the kind that likes to start problems among others. Sometimes people do this so they can feel in control. Sometimes they do it so that they can feel better about themselves. “The Boys and the Frogs” was written by Aesop. You can read Aesop’s Fables free on the internet. THE BOYS AND THE FROGS Some Boys were playing one day at the edge of a pond in which lived a family of Frogs. The Boys amused themselves by throwing stones into the pond so as to make them skip on top of the water. The stones were flying thick and fast and the Boys were enjoying themselves very much; but the poor Frogs in the pond were trembling with fear. At last one of the Frogs, the oldest and bravest, put his head out of the water, and said, “Oh, please, dear children, stop your cruel play! Though it may be fun for you, it means death to us!” Always stop to think whether your fun may not be the cause of another’s unhappiness. For Further Study: Read Ephesians 4:29-32. What kind of words should be coming from our mouths? Read 1 Timothy 5:2. When a group of young men are together, it’s natural for them to jest and” talk tough.” Likewise, a group of girls together might tease each other playfully. However, there is a soberness and gentleness of heart that young people in God’s family must learn to have with others, especially when they are in mixed company. We must remember to shine the light of Christ upon everyone we meet. Good-natured teasing & playful arguing can quickly turn into hurt feelings. We can’t lead others to Christ unless we show them His love. People will not want to be part of God’s family if that family cannot get along. List the names of all your family members. Also list your three closest friends. Now list three children whom you know, but not very well. Next to each person’s name, list three good things about them. Over the next few weeks, how can you compliment these people for their good qualities? http://peregrina1.wordpress.com/  . Check out Janice Tree's website! http://peregrina1.wordpress.com/ If you have children still living at home, if you are a children's Bible class teacher, if you are a babysitter or a grandma Janice has an abundance of Bible lessons on her website. Here's part of her introduction: My name is Janice Trees and I live in West Texas with my husband Jeff, three children, and numerous critters.   I have been teaching children’s Bible classes for almost 15 years. I started writing daily Bible lessons for my children in 2006. I wanted short, simple lessons that could be easily used and adapted to different age levels.  I wanted something that fit with our homeschool, where I use the Charlotte Mason method of teaching.  I decided to put my studies in this blog so that other families could make use of them. .  Coping with Your Child's Chronic Illness What is chronic illness? Chronic illness refers to an ongoing illness that often requires some amount of hospitalization. Congenital heart disease is a chronic illness because, while it can often be well managed, it never goes away. Asthma, diabetes, and arthritis are other examples of chronic illness. About 15% to 18% of children in North America are estimated to have a chronic illness, ranging from mild to severe. Having a chronic illness does not mean that a child will feel unwell all the time. What are the effects of chronic illness on children? Chronic illness means that there will be times when the child feels worse and may need tests and treatment. On top of that, chronic illness can affect a child's ability to participate in common daily activities and can also make it difficult to go to school, make friends, and generally have a normal life. This can make children feel different and isolated. The situation is compounded when other children talk about a child looking different or being afraid of "catching" the illness. Some children cope well with the pressures of a chronic illness while others need special support. How do children cope with chronic illness? How a child copes with a chronic illness like congenital heart disease depends on many factors. Having a simple heart defect that requires only one surgery for correction, for example, will have a different effect on a child than a complex defect that requires many tests, surgeries, and hospitalizations. The latter scenario can make children fearful or withdrawn, and even angry. It also depends on how old the child was when they were diagnosed. For instance, a child diagnosed at birth would have grown up with a different concept of "normal." In contrast, a child diagnosed later in life may have more struggles, although they are also more capable of understanding the nature of the condition and its treatment. Body image is also key; a child with scars or cyanosis, or who needs medical devices to manage day-to-day living, is likely to be more self-conscious. If something about a child changes, it takes a while for self-image to catch up. It's an adjustment, like moving to a new school or home. A child's ability to cope depends largely on a child's personality and upbringing. Some handle stress better than others. Emotional stability is also influenced by family dynamics. If the family as a group is handling the illness well, the atmosphere will be more calming. If there are significant stresses, stress levels will increase for everyone involved, most notably the affected child. What do parents worry about? Seeing your child ill is very hard on parents, as well as all other family members. There are a number of things that parents worry about, including not being in control, not being able to help their child, and concern over not making the right treatment decisions. Some specific issues include: Having to hand over care of their child to other people and having to put their trust in the health care team Stress over making medical decisions for their child and not understanding what's going on The struggle with their own emotions — anger, guilt — and physical and mental exhaustion Figuring out how to support their child Stress on the marriage Spending so much time at the hospital that working becomes impossible and family income is significantly reduced Worrying that everyone is evaluating how you deal with your child Fear of surgery and its outcome Fear of an emergency situation and knowing when to get help Not knowing whether a medical or behavioural problem that arises after treatment is related to a heart condition Stress of not knowing how their child is doing from one clinic appointment to the next Not having access to a doctor who is knowledgeable about their child's condition Knowing how to parent a chronically ill child Not knowing how the condition will evolve and if or when it might worsen What to tell friends and family Monitoring their child's symptoms and knowing a condition may be worsening Learning how to meet a child's needs at home after treatment Meeting the needs of the entire family while caring for a sick child Trying to define a "new normal" How do you cope when your child is sick? Your life will change dramatically once your child is diagnosed with a heart condition. You'll learn a new vocabulary and develop a new way of living. Many parents indicate that while discovering your child may have a lifelong condition is a bit like the "loss of a dream," it also provides the opportunity to see life in a new light and focus on the other good things that can be valued. Make sure you focus on your child as a person and not the illness. Try to be as positive as possible. It’s very helpful to talk to people who are supportive and reliable, and who will be there for you now and in the future. This can be a family member, friend, or support group. (Be aware, however, that not everyone will cope well with the news. Some friends and even family members may not know how to react or what to say, and simply may not be around for you.) Learning as much as you can helps prepare you. This applies whether the condition is acute or chronic, predictable or unpredictable. Keep a diary to record your child's progress, treatments and tests undergone, and key team member names and phone numbers. Build relationships with team members so that you can have full trust in what they are doing for your child. Speaking with other parents whose children have gone through something similar can also be beneficial, because they can share their experience. Your hospital may be able to put you in touch with these parents. You could also get in touch with support groups (like CHASE) and get involved in an Internet chat room. This is a great venue for asking questions, expressing concerns, and learning from the experiences of others. There are also usually health care professionals associated with the hospital who are trained in counselling, such as child life specialists and social workers, who can provide some support. A discharge planner can also help you plan ahead for when your child returns home. Ask the clinic nurse for a referral to these health professionals. If your find later on that it's getting increasingly difficult to manage your sick child at home, arrange for some respite care or occasional nursing support. Accept help from family and friends when needed, and give yourself time away to regenerate. Don't try to be a super hero. In terms of keeping friends and family up to date about your child's condition (without having to make numerous phone calls a day), consider setting up a Web site that people can consult regularly or having a "point person" who can manage a phone tree. Through all this it’s important to look after yourself, by managing your emotions, eating well, and finding some time to exercise and to relax. And it’s equally important to stay engaged with the rest of your family. Continue to nurture your relationship with your spouse or any other children you have. How do you raise a child with chronic illness? Raise them the same way you would another child. They need boundaries, opportunities, encouragement, and support. Overprotecting and spoiling them doesn't instill confidence and won't prepare them well for the future. Cultivating independence and having expectations of a child as he grows speaks to future wellness and the child's overall capability. Having structure also contributes to a sense of security. Also, by giving your child opportunities to make decisions, you give him a sense of being in control of his life (when so much of it is beyond his control). How can you support your child? It's critical to explain to your child, as best and as simply as possible, the origins of the illness. Many children feel guilty, believing that they are sick because they did something "bad." They also feel angry that they may not be able to do all the things their peers can do or not being able to "get well." As a parent, you can support your child by letting them know what's going and what lies ahead in terms of treatment. Help provide as many opportunities for choice as possible. By staying calm yourself, you model calmness to your child. If your child is young, make sure he has a favourite toy to comfort him. Communicate often so your child has a chance to express his emotions about the illness. If he's young, let him express himself through play. If he's old enough, teach him problem solving skills and deep breathing techniques to cope with the effects of the condition on his life. Help him develop special interests that take the focus off the condition and give him something to be proud of. Above all, be loving and make your child a key player in your family's activities. How do you help your child deal with pain? When there will be pain involved with tests or treatment, encourage your child to breathe (some children tend to hold their breath in response to pain), stay calm yourself and don't fuss, help your child think of other happier thoughts (sometimes distracting them works), and hold them or stroke them as appropriate, and depending on their age. How do you help your child get used to being different? Talk with your child about the issues that are important to him. Communication will help ease stress. It will also serve to dispel misinformation that you or your child may be focused on. Encourage your child to live life to the fullest within the context of his illness. Help him develop strengths and areas of interest, things he can be proud of. Helping him grow as a person will build his self-esteem. Self-esteem is how you feel about who you are and what you can do. Sometimes self-esteem takes a hit in a child with chronic illness if they feel they did something to deserve being sick or if the illness stops them from doing certain things. Building self-esteem can have beneficial effects in all areas of life, including making friends, fitting it, and doing well at school. On top of that, people with good self-esteem and a positive outlook also tend to be healthier and take better care of themselves. Also, prepare your child for questions from peers and others about his condition, as well as possible teasing or bullying, which affects children who stand out as being "different." Your child will also need to be prepared to encounter ignorance from people who don't understand their condition. They may think, for example, that your child's heart condition is contagious. Educate your child and help out by informing others as necessary, with pamphlets, meetings, or face to face. There are also health professionals at the hospital who can help your child adjust. These include social workers, child life specialists, and doctors who specialize in adolescent medicine. There may also be support groups or camps for kids with CHD in your area that connect children with common illnesses. In addition, there are lots of wonderful books for children that reinforce the pluses of being different. How can you help your child deal with teasing or bullying? Children often tease if they feel threatened by or are misinformed about someone. They also feel stronger themselves if they can pick on someone who seems weaker or different in some way. Often they pick up this attitude at home. Strategies for dealing with confrontation include: Ignoring it Refusing to express distress Meeting it head on, looking the person in the eye and saying "I refuse to be treated like this," and forcing the confronter to respond Defusing the situation with humour If in a public place, simply walking away If there is threat of assault, alerting people nearby by yelling "fire!" which gets more attention than "help!" How do you help siblings cope? When a child is very sick, it affects everyone in a family — parents, siblings, grandparents. Often, siblings get lost in the shuffle. All the attention is focused on the sick brother or sister. Everything seems to be about them: they get the visitors and the toys. Sometimes special occasions are forgotten when medical emergencies arise. All this can make siblings feel isolated and ignored. When parents are sad and frightened about a child, this can also affect the family dynamic. Siblings may not get a chance to discuss their feelings and what they think about their sibling's illness. As a result, they may act out or be very dramatic (sometimes even faking illness or acting younger than they are, for example) to get their parent's attention. They can also be very emotional — angry, jealous, sad, fearful, guilty. There may also be some embarrassment when their peers start making comments about their sick sibling. Studies show that without proper attention, these children are at increased risk of health problems, as well as psychosocial difficulties. They may suffer depression, anxiety, or other disorders. This can stem from the pressure of the uncertainty of the sibling's condition, the fact that life may be upside down, and the realization that responsibilities will increase in order to manage the household. There are things that can be done, however, and the good news is that sometimes illness brings families closer together. One key thing to do is explain to your other children the condition that your sick child has and explain why it requires so much time away from home at appointments are in the hospital. Maintain structure at home, while also being flexible. Be as organized as you can be, and have a schedule so siblings know who's at the hospital and when, and who's fixing dinner, picking the kids up from school. Be flexible but strive to maintain a sense of balance in your family. Schedule special "family time" together and make a conscious effort not to focus on your sick child's condition during family time. Communicate often and meaningfully to reinforce the family relationship. In terms of attention, get your sick child to share his toys with his siblings, and ask relatives to focus equally on all your children. Be hopeful and encourage your kids to have positive thoughts. If they're old enough, teach them stress management. If a child really seems to not be coping well with their sibling's illness, get them some help by way of a counsellor. You should definitely get help if they are demonstrating destructive or self-destructive behaviours. http://www.aboutkidshealth.ca FROM THE MAIL   . "I have a son who is Asperger's and when he turned 13 yrs. old everything began crumbling down.  It has been a marathon and with Our Lord's help and my faith in Him I have been able to come through this difficult hardship.  He has recovered so much but still has so way to go.  I am glad I found this website. God Bless You." Some Facts About Asperger's from the Autism Society: Asperger's Disorder was first described in the 1940s by Viennese pediatrician Hans Asperger who observed autistic-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development. Many professionals felt Asperger's Disorder was simply a milder form of autism and used the term "high-functioning autism" to describe these individuals. Professor Uta Frith, with the Institute of Cognitive Neuroscience of University College London and author of Autism and Asperger Syndrome, describes individuals with Asperger's Disorder as "having a dash of Autism." Asperger's Disorder was added to the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in 1994 as a separate disorder from autism. However, there are still many professionals who consider Asperger's Disorder a less severe form of autism. Characteristics What distinguishes Asperger's Disorder from Autism Disorder is the severity of the symptoms and the absence of language delays. Children with Asperger's Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger's Disorder may just seem like a normal child behaving differently. Children with autism are frequently seen as aloof and uninterested in others. This is not the case with Asperger's Disorder. Individuals with Asperger's Disorder usually want to fit in and have interaction with others; they simply don't know how to do it. They may be socially awkward, not understanding of conventional social rules, or show a lack of empathy. They may have limited eye contact, seem to be unengaged in a conversation, and not understand the use of gestures. Interests in a particular subject may border on the obsessive. Children with Asperger's Disorder frequently like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowing categories of information, such as baseball statistics or Latin names of flowers. While they may have good rote memory skills, they have difficulty with abstract concepts. One of the major differences between Asperger's Disorder and autism is that, by definition, there is no speech delay in Asperger's. In fact, children with Asperger's Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature, or it may be formal, but too loud or high pitched. Children with Asperger's Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give-and- take nature of a conversation. Another distinction between Asperger's Disorder and autism concerns cognitive ability. While some individuals with autism experience mental retardation, by definition a person with Asperger's Disorder cannot possess a "clinically significant" cognitive delay and most possess average to above average intelligence. While motor difficulties are not a specific criteria for Asperger's, children with Asperger's Disorder frequently have motor skill delays and may appear clumsy or awkward. http://www.autism-society.org Interesting articles on Asperger Syndrome: http://www-users.cs.york.ac.uk/~alistair/survival/ Marc Segar's, "'Coping: A Survival Guide for People with Asperger Syndrome." This is an entire book written by a man with AS, you can read online. http://www.aspires-relationships.com/articles_how_to_love_without_emotions.htm How to Love Without Emotions by Robert W. Murray. This is a helpful article written by someone with AS. http://www.udel.edu/bkirby/asperger/grandparents.html  an excellent article for grandparents of a child with AS... good for the rest of the family and friends as well.  . Picture a mind divided in two parts; not between left and right, but rather, between the ‘real’ world and a completely different world, all meshed into one.  This stark dichotomy is how an autistic mind exists. From what I have gathered both from my own experiences, and from discussing this issue with others having AS, autistic people live in their own world.  This world is marked by routine, structure, and in many ways, complete detachment from people around them.  In this world, I am able to logically deduce issues which come to mind, work out my theories on various issues, and operate in a certain way which enables me to feel at ease.  The autistic world within my mind provides me with great comfort and does not involve emotional, empathetic, or social situations. The break between one world and the other is where many autistic people are classified as being severely or low-functioning autistic, and high-functioning.  Often times we see low-functioning autistic individuals as non-verbal, unable to move physically and generally are considered to have a low IQ.  High-functioning autism is difficult to diagnose, as those that have certain forms of autism may not even know it or seek assistance, and just live as if they are different.  What is also of interest to me is that in some cases, the lower-functioning autistic people live exclusively in their own world; they are unable to make the break and operate in the ‘real’ world when they choose to.  For high-functioning individuals, a major component and defining element of their autism appears to be the ability to move back and forth with some ease, though anxiety is produced when doing so. http://web.mac.com    from A_Not-So_Beautiful_Mind_by_Robert_W._Murray.html  . HONESTY Joan Fleitas, Ed.D., R.N. It's natural to want children to be happy. And it's natural to want to protect them from situations that make them sad, or angry, or frustrated. Because hospitalization has the potential to evoke many negative emotions in children, when seven year old Jeffrey becomes a patient, it's natural to want to protect him from the truth. Natural, but not in his best interests if he is to be successful in this new role. And not to his advantage if he is to continue to trust the most important people in his life. Here are some "reassurances" that parents often give their children; reassurances that backfire, that should be avoided, and that should be replaced instead with the truth and a hug: "We're only going to the toy store.", (when hospitalization is the agenda). "I'll be back as soon as I go to the bathroom.", (when you plan to go home and return the next day). "The shot won't hurt you, don't worry.", (when an injection is necessary). "We'll get to go home as soon as you drink that carton of milk." (when the plan is for four more days of hospitalization). Reassurances like these are common, yet as unfortunate as they are understandable. Part of growing up is learning how to deal with difficulty. It's learning how to cope with frustration, pain, and loss. As parents, we can teach our children effective repertoires for handling tough times. And we can do so with honesty and love. Here are some alternative ways of dealing with separation, pain and treatment regimens:  "Jeffrey, we need to go to the hospital so that you can get better. Remember when we visited Aunt Mary? We'll be staying in a different part of the hospital, a part just for children. And guess what...there's a special room where children get to play." "I need to go home, Amy, but I'll be back after dinner. Dinner comes in the hospital right after 'Mr.Roger's Neighborhood'. Look, I brought your very favorite blanket to keep you company while I'm gone." "It's time for that special medicine, Jeffrey...the kind that you can only get through a needle. Isn't it great that the nurse used that special cream to make your skin go to sleep? Now you'll only feel it a little bit." "You've had a tough time drinking since your operation, haven't you, Amy? Look what the nurse brought us...two tiny cups. We can have a tea party, and each of us can drink two cupfuls of juice. It will be easy because they're so little! What kind would you like?" http://www.lehman.cuny.edu/faculty/jfleitas/bandaides ---------------------------- You may notice some behavioral changes in your child after the (medical) procedure. Some children may regress by acting younger than their age. Others may cling to you more than usual and will not separate from you as easily as they have in the past. These are common reactions that usually disappear with time. Acknowledge your child's frustrations and regressive behavior, but it is important to continue to provide age-appropriate activities and remain consistent with your family's regular routine and behavioral guidelines.  via cancer.net ---------------------------- Your young child may also display anger towards you and this, too, is normal. It's just a temporary coping mechanism and will soon go way. Try not to take it personal. A nurse once told me they were more concerned with the young children who didn't display any emotion. pg . http://www.kaitlynlangstaff.org/index.html This site tells about Kaitlyn Langstaff, a 9 year old girl who had a toxic reaction to Children's Motrin and developed Toxic Epidermal Necrolysis. Kaitlyn developed painful blisters, eye and lung damage, and passed away 20 months later. While this is a very sad story, Kaitlyn's wonderful attitude is displayed in her poetry she wrote during these months. I don't have permission to copy them, but it would be encouraging to go to her parent's site and read her poetry, especially Happy Feelings, Touch is the Sense of Love, I'm a Survivor, and Faithful Father. . Helping Children Under Stress By: Judith J. Bush, MA Children’s reactions to stress vary. Likewise, there are many coping strategies. Children become more resilient, or are able to bounce back from stress, when they live in a supportive environment. This means that adults help children develop a range of coping strategies. An important part in reducing stress is a stress-free environment. A stress-free environment is having people who listen, having the ability to find hope, and finding ways to anticipate stress and learn ways to avoid it.Some ways adults can help: Show how they cope in healthy ways-like staying calm, controlling their anger, and thinking through a plan. Be pro-active - tell children about changes in schedules, - plan activities where children can show their feelings - like books, art, puppets, play and writing Develop children’s thinking skills - ask open ended questions about solutions to problems, like “What could we do about this?” Help children tell reality from fantasy. For example, a child’s behavior didn’t cause his or her parent’s separation. Find time to talk about stressful events and everyday events. Help to develop a child’s special interest. Children will then feel proud about themselves. Teach deep breathing. Ask children to close their eyes and think about a quiet or happy place. Teach ways to solve problems - who else can help? Let children know that it is okay to feel angry, alone, scared, or lonely. Give names for children’s feelings and words to help express their feelings. Have high, clear expectations without being overly rigid. Provide ways for children to contribute to the family in meaningful ways. Show caring and warmth. Research shows that children learn how to cope with stress and life changes when they are supported.Factors that help to support children during stressful times include: A healthy relationship with at least one parent or close adult. Well-developed social skills. Well-developed problem-solving skills. Ability to act independently. A sense of purpose and future. At least one coping strategy. A sense of positive self-esteem and personal responsibility. Religious commitment. Ability to focus attention. Special interests and hobbies.  -from Helping children cope with stress Raleigh, NC: North Carolina Cooperative Extension Service. An apple a day keeps the doctor away Apple in the morning - Doctor's warning Roast apple at night - starves the doctor outright Eat an apple going to bed - knock the doctor on the head Three each day, seven days a week -  ruddy apple, ruddy cheeks .  APPLE RECIPES FOR CHILDREN Let your child help as much as she/he can with following recipes, even if bedbound or in a wheelchair. Bring the ingredients to the child. Remember apples can be a choking hazard for young children. Homemade apple sauce. Just peal and cook slices of apples on stovetop. Add some sugar and cinammon if you like. Blender Applesauce: 3 tart apples 1/4 cup honey Blender Applesauce: (no cooking needed) 6 large apples 3/4 cup water sugar & cinnamon to taste. Peel, core, and cut apples into chunks. Put water & a few chunks of apples in blender. Blend mixture and add remaining apple pieces. Add sugar & cinnamon to taste. Peel apples. Cut each apple into 4 pieces. Remove seeds. Put the apples into blender with honey and a small amount of water. Blend until smooth. Eat applesauce immediately. Can’t get your kids to eat their green beans? Slice an apple and arrange the slices on a plate. Set them down on the table while you get the rest of the meal ready. See how quickly your children will chomp on this finger food while they wait for dinner and then you won’t have to worry if they don’t eat their vegetables. Interlace slices of apple with cucumber, tomato, or fruit such as an orange, or a kiwi fruit and you will be augmenting the apple’s nutrition with an even wider selection of vital minerals and vitamins. Serve them while you wait for the pizza delivery and your kids will have devoured them before the doorbell rings, or set them on the table while you microwave the lasagna and watch them disappear before the dinger dings.  Philip Kustner It is a good idea to eat apples with their skin*. Almost half of the vitamin C content is just underneath the skin. Eating the skin also increases insoluble fiber content. Most of an apple's fragrance cells are also concentrated in the skin and as they ripen, the skin cells develop more aroma and flavor.  -University of Illinois  (*Make sure child is old enough to handle the skin without the fear of choking.) Apple Wheels: A simple apple with a mission will get your children eating the apple slices to get to the middle. Apple cored with skin on Peanut butter Chocolate chips Raisins Mix PB, chocolate and raisins. Core apples and stuff mixture into center. Refrigerate for one hour. Slice into 1/4 inch slices and serve. Core 1 apple. Fill the center with a little butter, brown sugar, raisins and season to taste with cinnamon. Cook for a minute in the microwave. Allow to cool as hot food is hazardous to older children. Core one apple for each child using an apple corer. Then let your kiddos fill the inside of the apple with a mixture of cinnamon and sugar. A medium apple will usually hold 2 tablespoons full. Then they place a pat of butter on the top of the cinnamon and sugar. Next, you wrap the apple up in pre-made pie crusts which you can buy at the grocery store. Make sure that the apple is covered beginning at the bottom and going up. Let the students do this with your help. Make sure they don't completely cover the hole where the cinnamon and sugar is, just up to the edge of the core. Finally, bake your apples in a 350 degree oven for 30-40 minutes on a foiled cookie sheet. The kids will love these! Be sure you let them cool before serving. APPLESAUCE MINI PIZZAS These are really yummy! Kind of an apple Danish taste. Don't worry about exactness here- anything goes! This would be great for a cooking center activity, with picture cards for the children to look at. Per child- 1/2 English muffin 1 Tbs. soft cream cheese 1 Tbs. applesauce 1 shake cinnamon a few raisins Paper plates, plastic knives, toaster or oven. 1. Give each child an English muffin half. 2. Let each child spread muffin with cream cheese. 3. Plop the applesauce on top of the cream cheese, and spread around. 4. Shake on the cinnamon. 5. Sprinkle with raisins. 6. Toast until warm. (Can do a bunch on a cookie sheet in the oven) Cool slightly before serving.  "apple smiles". Give each child 2 apple wedges. Have them (or you) spread peanut butter on one side of both wedges. Next take mini- marshmallows(approx.4or5)and sandwich them between the 2 wedges, creating an apple smile. You can also leave out a marshmallow here or there for some missing teeth or use candy corn for halloween teeth.

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