Caring for a Special Needs Child

Until one is a parent of a child with a chronic medical condition, one can never know the daily challenges and sacrifices under such circumstances. However possible it is to overcome the heartache knowing your child will never have a “normal” life, one lives day to day hoping for some relief and a miracle. What most parents take for granted in healthy children become monumental steps in the chronically ill child. Being able to sit, crawl, walk, or eat without assistance become milestones for such a child.

Faced with a lifetime of caring for a child who is incapable of doing so for themselves, parents struggle to balance work, rest, and in many cases, the care of other siblings. This is especially difficult for single parents with special needs children. The divorce rate in marriages of parents with children with chronic medical conditions is up to 85%. The demands healthy children have are many. The extra pressure children with medical conditions have can lead to despair and giving up. Due to the inordinate amount of stress, sometimes one parent cannot maintain the necessary relationships.  Now and then it is easier to walk away than work to maintain the additional responsibilities.

It is in these exceptional conditions parents may find their limits and strengths. A parent’s hardship in raising a special needs child can turn into its own unique reward and lead to deeper insights into the mysteries of life. What seems like coincidences may be guidance from a Higher Source or simply a parent’s relentless pursuit to find what is best. Being in tune with those moments fortifies one’s faith in life, oneself, and the people one meets along the way.  It is a path in and of itself but feels more like a maze to navigate through without signs or signals. It is uncharted territory. One area specifically is which therapy to use in treating one’s child.

We have what is termed “the standard of medicine,” which is the treatments most often employed in disease conditions. While they seldom work for everyone they are expected to be used. Pharmaceutical drugs have side-effects that often require another drug to quell the side effect. This can lead to multiple drugs “treating” multiple side-effects. Erratic behavior and other psychological problems are usually traceable to the drugs themselves. In fact, if one uses drugs for long periods of time or ingests them in large enough doses, those same drugs are often capable of creating the very same disease symptoms they were designed to treat. Check it out in the Physician’s Desk Reference (PDR) book, a compendium of relevant information on each drug manufactured.

Caution is therefore essential in the world of pharmaceutical drugs and before initiating any course of action for your chronically ill child. Educate yourself about a drug prior to administering it. Try to find the most appropriate medical and/or alternative treatment, and know that there will likely be many different trials and errors along the way while you search for the best solution for your child.

More and more, alternative medical treatments for children with chronic disease are becoming recognized as a safer and healthier way to deal with the child and their condition. Unfortunately, insurance does not cover many of the tests or supplements in alternative medicine so parents are left to cover out of pocket expenses which can be very costly.

More than ever, parents are being exposed to the beneficial effects of amino-acids, botanical medicine, minerals, vitamins and other food nutrients. Again, even in the world of safer, natural therapies, education is necessary for evaluating how effective a therapy might be. Sometimes one must sift through the apparent contradictory statements to find the truth about a study. Arming oneself with solid information regarding a particular therapy may persuade one’s physician to bend a little to try it.

Many physicians do not have the necessary education in alternative medicine to be able to help a parent make a sound decision. Many physicians also have a bias towards alternative medicine simply based on their schooling which never included classes in alternative medicine. As with any health condition, you must educate yourself and become your child’s best advocate. Whether you decide to use conventional therapies, alternative therapies, or a combination, you must inform yourself and find the best, most knowledgeable and experienced resources that can help champion your chronically ill child.

The internet has become the most useful tool any parent with a chronically ill child could hope for. There are countless websites dedicated to educating and verifying how alternative therapies help children of all ages and conditions, recover or ease their medical condition. The opportunity now exists to read about families with children of severe illnesses from all over the world and the treatment strategies they used. Networking within this community allows parents hope and an ability to find a doctor well versed in an exact therapy that is not the “standard of medicine.”

One area that has taken center stage in many children’s disease relates to nutrition, particularly a child’s diet. Many neurological disease’s, including autism and ADD/ADHD are intimately tied to what one eats. Fats and oils must be in the correct balance, protein must be adequately digested and grains and sugars must be limited, if not eliminated altogether. Artificial sweeteners, colorings, monosodium glutamate (known as MSG but many times not labeled or under different names) have a profound effect on the developing brain of a child and should never be given.  These are excitotoxins that are known to cause neuronal (brain cells) death. Other cause and effect relationships in many chronic illnesses are vaccinations and heavy metal toxicity. Tests for heavy metals can be performed through hair samples or urine. Since most vaccines are made with aluminum and mercury, these can be tested for and appropriate detox programs can be implemented.

Again, educate yourself. Just because someone, somewhere advocates a particular treatment does not mean it will work for your child. Dig and dig until you are comfortable with real knowledge about a therapy. Make a list and ask questions, even challenge the physician who is advocating. Ask for a contact list of patients who have tried the therapy or ask they contact you. It takes great effort and time but in the end it may pay off. You and your child may finally find relief. Never give up, not even when someone says your child will never do this or that. Never. There is someone, somewhere in your immediate area and if not, close enough to you that can help. Help and information may come from people you may know, but more often it is from people you do not know and happen to meet by chance. Somehow the universe connects people together at just the right time in their search for mutual help. Help may come from understanding another person’s life and journey through the process. More often it is exactly what you may need.

Because children’s brains develop at a phenomenal growth rate and learning is so essential for them, listed below are some websites that may help other parents who are searching for answers for their child with a chronic medical condition.

www.nacd.org – The National Association for Child Development is dedicated to helping children of all types and levels, learn faster and accomplish more given the opportunity. They are especially adept with children who have been diagnosed with ADD/ADHD, autism spectrum disorder, brain injury, cerebral palsy, Down’s syndrome, dyslexia, and other learning disabilities.

www.jocrf.org – The Johnson O’Connor Research Foundation is a nonprofit scientific research and educational organization with two primary commitments: to study human abilities and to provide people with knowledge of their aptitudes that will help them in making decisions about school and work.

www.amenclinics.com – This site offers information on SPECT brain scans and ways to improve brain function in all ages. Clinic sites around the country are listed.

www.mindeyeconnection.com – This epilepsy site specializes in the relationship between one’s eyes and brain function. Very important site.

www.cureepilepsy.org/home.asp. Epilepsy affects 1% of the world’s population.

www.theneurocore.com- Another useful site about the brain and behavior intervention by using biofeedback.

www.blaylockreport.com – Dr Russell Blaylock’s website. Dr. Blaylock is a nationally recognized, board-certified neurosurgeon, health practitioner, author and lecturer. His book, “Excitotoxins: The Taste that Kills” exposed the dangers of monosodium glutamate (MSG) and many other chemicals found in food as flavorings which disrupt normal brain function.

www.braincures.com – Dr. Jay Lombard’s website and one of the few neurologists incorporating nutrition and alternative medicine.

www.nvic.org/default.aspx – Despite the media’s misinformation about vaccines, most neurological diseases in children are a direct result of the massive vaccinations given in early life. This site is the National Vaccine Information Center.

www.phoenixhealth.me – This site contains valuable information on diet, nutrition, herbs and enzyme therapy.  A number of tests are available through this site. References to clinical studies are available for parents wishing to incorporate other forms of therapies for their children. An excellent resource for parents with links to other sites.

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