My Perfect Rose
What to do when your child is born with a rare genetic disorder?

by Michele Aitken

We have traveled down unmarked territory as only true pioneers can. Some of the path was treacherous, and yet I remember those moments of pure joy sent to me with long eyelashes and a toothless smile.

As parents, we all look at our children and think that they are the most beautiful and perfect creatures on earth. I don't think I was prepared for the rare beauty I was to receive with my second child. I'm a true believer that beauty is more than skin deep. Yet, here was that magical combination of physical beauty and a spiritual strength and fortitude that is so rare we sometimes miss it. So it only made sense that we named her after the perfect essence of beauty, a Rose.

My daughter's name is CarlyRose and she definitely is that: a rare and perfect rose, beautiful and fragile with a sweet intoxicating aroma of purity and strength. As I first started writing this article, I realized how much there was to say. How do you put into words something that in a moment changes all you believe to be true? Something that moves your stability and completely puts you onto new ground? It's terrifying and yet exciting to be on a new pathway of life. You sharpen your intuition skills and learn that your inner voice is your only path.

CarlyRose was born with a rare genetic disorder – so rare, in fact, that there is only one other human being who has the same disorder as my daughter. Because CarlyRose has completely unique challenges (even different than the other person who has the same disorder), my husband and I were swept away with genetic bombardment in a maze of information. We became experts in the field.

Physically, CarlyRose had many challenges when she was born. She had a heart murmur and a small hole in her heart. She was missing her right thumb; had no hearing in her right ear; was unable to eat by mouth because of a underdeveloped uvula and small jaw; and had the worse case of reflux the specialist had ever seen. She also had the visual problem of myopia. Because of the terrible reflux, CarlyRose would choke and aspirate, often creating pneumonia. My entire family lived in and out of the hospital for over three months during her first year of life. We were extremely fortunate to be introduced to some wonderful healers here in Anchorage. With the wonderful love and support of these men and women, my daughter is alive today.

Being a massage therapist, I knew the power of natural healing. Yet I also knew that both sides – traditional Western medicine and alternative healing -- were treading on new ground with CarlyRose. One of the greatest challenges of having such a rare child is that no one is an expert on what will support her best. There were no research papers or books written on my daughter's illness, her diagnosis or her prognosis. How could there be? This took me to new heights as a mother. I was – and still am – put to the test using my women's intuition and motherly instinct.

My daughter turned 2 at the end of September. I am so grateful for every moment I have had with her. She is absolutely amazing in every aspect of life. Through her, I have definitely learned the word miracle. We have traveled down unmarked territory as only true pioneers can. Some of the path was treacherous, and yet I remember those moments of pure joy sent to me with long eyelashes and a toothless smile.

My daughter is no longer a baby – we have definitely moved into the toddler zone! New challenges and new directions lay before us. I am in the beginning stages of creating a foundation for my daughter and others who feel they are the "only ones." One of our projects will be based in Anchorage. It will allow children with physical and health challenges to have the privilege of holistic health care. I also have a passion for education and helping to bring awareness to the public of alternative health care.

I have had a dream for many years that someday in the United States, Western medicine and Holistic or Alternative medicine will join hands to create a sense of wellness for all of the body. I believe that CarlyRose and I can make a difference in this area. We will definitely spend the rest of our lives trying!

Instead of fighting against the system as we know it, we need to educate everyone and let the path unfold for all to follow. I love the children and believe that all children need to be given the best possible chance for wellness in all areas of their lives. I'm sure if we look closely, we all have miracle children to teach us unconditional love and beauty in our world. My prayer is that we all do our part to rid this world of ignorance and prejudice – both for my Rose and yours.

Michele Aitken is a massage therapist specializing in cranio-sacral therapy, especially for children in need. For more information on the foundation for CarlyRose and other children with rare disorders, call Michele at (907) 522-4430 (home); 279-4653 (work); or email: aitken@alaska.net

Special Needs Children and Yoga
by Cathy Stingley

 

Those who have applied Yoga to special needs children are finding some surprising and exciting changes.

 

In 1995, Renata, the daughter of Sonia Sumar, founder of Yoga for Special Needs Children, spent four months with Param, a seven-year-old boy who has severe physical limitations related to cerebral palsy. For the time Renata stayed with Param and his family in Virginia, she conducted a one-hour yoga session, three days a week.

As noted in Sonia Sumar's book, Yoga for Special Children, Param's father, Richard Johnson, a registered Nurse for fourteen years, specializing in Adult Physical Medicine and Rehabilitation, related the following changes in his son while working with Renata:

"The effect on his body tone was immediately noticeable. His sitting posture and stitting balance improved. His body tone relaxed, especially in the shoulders, arms, and hands, enabling him to more easily perform tasks requiring upper-extremity dexterity. His head and neck alignment improved, allowing him to hold his head erect for significantly longer periods. Cognitively, he was able to pay attention to conversations for a longer time before becoming fatigued and was more focused while listening. An integrated calmness of body and centeredness developed as the yoga therapy sessions continued. Because of the cumulative benefits of regular practice, his spinal scoliosis diminished. It also became apparent to his physician and therapists that, due to his decreased muscle tone, the surgery contemplated for Param was no longer necessary. This surgery is often performed on the muscle group that causes hip dysplasia."

Current government figures show that one out of every ten children in the U.S. is identified as having special needs. It is an often overwhelming challenge to integrate these children into the home, school and workplace. Yoga is one of many complementary approaches being used to meet that challenge.

Yoga has long been known for its meditative, relaxing and healing qualities. It has been applied therapeutically in many settings with a high degree of success. The same is true with special needs children. Those who have applied yoga to special needs children are finding some surprising and exciting changes.

The specialized breathing exercises and relaxation techniques of yoga have led to improved concentration and reduced hyperactivity. The step-by-step, integrated system of yoga poses have increased cognitive and motor skills in children with learning and developmental disabilities. Social skills also improve. Music and sound therapy, massage and eye exercises are a part of an integrated yoga program for special children. Early intervention with yoga can aid in the formative development of infants and toddlers.

Marvelous progress has been made in the area of Down Syndrome and yoga. Some who have started yoga in the very first months of life have shown little or no delay. In some cases, heart murmurs have disappeared. Some children have been able to join mainstream classes in school. And there have even been reports of shifting from a low to normal placement over the years.

Cerebral Palsy also responds beautifully to yoga, as the above story relates. Children have greater flexibility, range of motion, balance and coordination. They will begin doing things they have never done before.

Other syndromes and disorders can be addressed through the integrative, developmental yoga approach. Classes are available for special needs families and professionals. Knowledge of development, breathing exercises, relaxation and the yoga positions to meet unique needs can enhance physical, mental and emotional development in a safe, gentle, loving way.

Cathy Stingley is the Director of HANDLE of Homer. For more information, readers may call her at 907-235-2978; write P. O. Box 1968, Homer, AK 99603; e-mail handle@xyz.net or visit the website at www.handle.org

Handling Hyperactivity at Home
by Skip Hrin

 

Catching someone in the act of doing something good and acknowledging it is the challenge in affecting behavior changes.

Hyperactive children are the most frequent psychological referral to family mental health and pediatric facilities. In the majority of cases, they receive the diagnosis of ADHD (Attention-Deficit/Hyperactivity Disorder). While this disorder is reported to be diagnosed in about 3 to 5 percent of school-aged children (with reports showing a prevalence of up to 16 percent when all varieties of the disorder are considered), people diagnosed with ADHD do not behave in the same manner. They are, however, almost completely treated with stimulant drugs such as Ritalin, oral antihypertensives and antidepressants.

What happens to the children who take this medication? In the classroom, their actions tend to be more goal-directed and "on task" than before. Things going on around them are often less distracting. They tend to become less aggressive and follow rules better. Psychiatrists, parents, and teachers are often pleased with the changes they see and interpret them as a sign that a child may be "finally settling down."

According to research, however, approximately one-third of the children diagnosed as hyperactive do not become less restless on Ritalin. Some actually become more agitated. At best, the drug can help those who have been accurately diagnosed to focus so they can temporarily absorb information better. Unfortunately, the drug usually does nothing to enhance learning or improve actual academic achievement beyond the short term. Even for those children whose behaviors do respond as intended, the effect is only a temporary suppression of symptoms – not a cure. Not to mention possible meanings attributed by the children (and parents, teachers, caregivers, too), believing they have “something wrong” with their brains that makes it impossible for them to control themselves without a pill! The long-term implications of this type of thinking is concerning, to say the least.

As with any drug, there are inevitably adverse side effects to Ritalin. The Physicians' Desk Reference lists more than 25 symptoms ranging from nausea, insomnia, headaches, weight loss, elevated heart rate, increased blood pressure, repetitive involuntary movements or tics, and seizures.

What about long-term side effects from the drug? This is an important question because children are often placed on Ritalin for many years. It is also a frightening question, because to date no adequate long-term studies have been performed. The children previously and currently prescribed the medication are, unfortunately, the group that will provide the information of long-term effects.

In order to avoid potential side effects of Ritalin, “drug holidays” are often recommended. This abstinence from the drug (often recommended over weekends, holidays, or summer vacations) can also be an opportunity to evaluate a child’s behavior free of medical interventions to possibly determine if the behavior has diminished or is now more manageable.

Alternatives to leading medical treatment are available. This magazine alone is a good source of alternate treatment modalities. Before you begin any treatment plan, however, you should always seek the advice of a trusted, knowledgeable professional. When considering their services, it may help to ask yourself if that person makes himself or herself available to you, and does he or she answer your questions in such a way that you feel you've been heard? What are the available treatments? What is known about the effectiveness of each? Here a couple alternatives to consider:

	Nutritional supplements. Both macronutrients (amino acids, lipids, carbohydrates) and micronutrients (vitamins and minerals) have been proposed as treatment for ADHD.
	Homeopathy. Clinicians using homeopathy for ADHD have reported good results, though overall objective evidence has been lacking. Researching this topic yourself may be helpful.

Children diagnosed with ADHD often have behavior patterns that attract negative responses. When someone is identified as diagnosed with ADHD, the tendency for others to notice ADHD congruent behavior is not only natural but far too easy. One of the most successful techniques to avoid this trap is proactive recognition. Simply put, it is the opposite of finger pointing and criticizing. Catching someone in the act of doing something good and acknowledging it (along with forming a habit of doing both) is the challenge in affecting behavior changes. When parents and teachers point out the positive aspects of children’s behavior and choices, the behavior is more likely to be repeated. Support of positive behavior may also have the unintended effect of reminding the caregiver, too, of the positive aspects to the child’s behavior.

To put proactive recognition into action, concentrate on one or two areas where improvement is needed. After a week of positive feedback in the identified area(s), the child should have made progress towards assimilating the praised behaviors into their daily routine. Move on to different behaviors that need proactive recognition as needed. Ideas that may help:

	Invest equal energy discussing successful, positive accomplishments as reminding of rules and goals.
	Discuss alternate choices that could have been made.
	Reinforce expectations and rules.
	Point out desirable behaviors.
	End discussions on the positive note of complimenting.

Consider, too, that for the entire school day, students are expected to sit still for hour upon hour, and to do whatever they are told. While well intentioned, a good number of schools end up teaching obedience and conformity first, then reading, writing, and arithmetic. There are alternative approaches to learning that involve children as active participants not producing boredom and restlessness (such as Montessori schools).

Among the many factors that shape the lives of children, nutrition often plays a critical role. What children eat has a profound influence over the functioning of their brains, the way they process information, and the way they think, learn, and act. Although most human beings have the ability to tolerate a certain amount of exposure to harmful substances, some of us are more sensitive biochemically than others. For children who are especially sensitive, the three most troublesome – chemicals and synthetic food dyes, artificial flavorings, and preservatives – can cause a host of physical, emotional, and mental reactions, and lead to an ADHD diagnosis.

The argument over nutritional contributors to hyperactive behaviors aside, adherence to a healthy diet free of additives and colorings can certainly benefit your child. When children (and the rest of us, too) are put on a healthy diet based on nutrient-dense foods like whole grains, vegetables, and fruits, and avoid sugar and artificial colors, flavors, and preservatives, the results are predictably outstanding.

Dr. Skip Hrin is a licensed Clinical Psychologist with over 11 years experience helping individuals, families, and couples with a wide range of difficulties experienced in today’s world. Phone: (907) 350-9603.

Chiropractic Care Changed Our Lives
by Paula Willmon

 

Our chiropractor has cared for my son and it is like no other doctor-patient relationship I have ever had in the past.

I used to think that going to a chiropractor meant that one had to actually hear their bones ‘crunch’ to feel better. I now understand that if energy blockages are released from our bodies that there is seldom a need to make a forceful adjustment to one’s body. If you have ever picked up an Alaska Wellness magazine, you are either aware or becoming aware that emotions play a big role in your physical health. I am writing to bring awareness to a form of chiropractic care that has literally changed my life and the life of my son. Let me explain.

When he was 18 months old, my son had a fall that resulted in a concussion. He would not let anyone touch his head for two full weeks. I finally found a chiropractor who made all the difference. When I took my son to see her, I was desperate to find relief for him. However, she told me that she wouldn’t work on him unless he was comfortable with her. Although this was not something I wanted to hear, she was right.

When we go to see our chiropractor, I talk about what has been going on in our lives. Just thinking about these events raises the energy that needs to be cleared from our bodies. Through a method called Toftness, our chiropractor is able to detect where energy needs to be released. She can then make the adjustment needed using an activator. When my son says his tummy still hurts and she is not detecting anything through her instruments, she can use another method called Kinesiology. Kinesiology is a method of muscle testing the body for what it already knows. In order to do this for infants and young children, a parent is used as a surrogate for the muscle testing while holding the child. Based on my own experiences, this method has helped me to better understand my son’s emotional complexities.

Our chiropractor has cared for my son and it is like no other doctor-patient relationship I have ever had in the past. I believe this comes through her gentle personality. However, the type of chiropractic care I am speaking of is also gentle and non-invasive. My son has feared chiropractors in the past because he thinks they are going to cause his body to make noise. I highly recommend the methods of Toftness and Kinesiology as chiropractic alternatives for children as well as for adults. If not for the type of chiropractic care I receive currently, I would not be where I am today in my own journey of personal growth and healing.

Paula Willmon wishes to share her experiences of the wonderful advantages of quality holistic health care. For further information on chiropractic care, look in the Alaska Wellness Yellow Pages or contact Paula at 677-8100.