Caring for a Special Needs Child

Until one is a parent of a chronically ill child, one will never know the challenges and sacrifices made. It is difficult, if ever, to overcome the heartache knowing your child will never have a “normal” life. One lives day to day hoping for a little relief or miracle. What most parents take for granted become monumental steps in the chronically ill child. Being able to sit, crawl, walk, or eat without assistance become milestones.

Faced with a lifetime of caring, parents struggle to balance work, rest, and care of other siblings. This is especially difficult for single parents. The demands can lead to despair and giving up. Due to the inordinate amount of stress, parents frequently cannot maintain a marriage. In many cases, it is easier to walk away than maintain day-to-day responsibilities. The divorce rate climbs to 85%.

Finding reliance on oneself

In these extreme conditions parents may find their strengths. A parent’s hardship may turn into its own reward and lead to deeper insights. What seems like coincidences may be guidance from a Higher Source or simply a parent’s relentless pursuit. Being in tune with these moments fortifies one’s faith in life, self, and others one meets along the way. At times it is like a maze to navigate through, without signs or signals. It is uncharted territory. One such aspect is deciding which therapy is best to use in treating one’s child.

The “standard of medicine” is the treatment most often used in disease conditions. In most cases, pharmaceutical drugs are said to be the only choice. Yet these have detrimental side-effects often requiring another drug to quell the 1st drug’s effect. This often leads to multiple drugs “treating” multiple side-effects. Erratic behavior and other psychological problems are usually traceable to drugs. Pharmaceuticals are known to create the same symptoms they were designed to supress. The Physician’s Desk Reference (PDR) is a compendium of relevant information on each drug manufactured.

Caution is essential in choosing any course of action for your chronically ill child. Educate yourself about a drug prior to administering it. Research to find the most appropriate medical and/or alternative treatment. Accept there will likely be trials and errors along the way while you search for the best solution.

The Promise of Alternative Medicine and Its Frustrations

Alternative medical treatments for children with chronic disease are often without negative side-effects. Unfortunately, insurance does not usually cover many of the tests or therapies. Parents are often left to cover out of pocket expenses which can be very costly. Some have found GoFundMe – like websites useful in raising funds to cover costs.

Parents are discovering beneficial effects of amino-acids, botanical medicine, minerals, vitamins and other food nutrients. Even in the world of safer, natural therapies, education is necessary for evaluating a potential remedy. Sift through the sometimes contradictory statements to find the truth about a study. Read who sponsored the study. It will show any conflict of interests. Armed with solid clinical information you may persuade your physician to try alternatives.

Most physicians are not educated in alternative medicine and are inept to help a parent make a sound decision. They may also have a bias against alternative medicine. With any health condition, you must educate yourself and become your child’s best advocate. Whether you decide to use conventional or alternative therapies, or a combination, inform yourself. Search for knowledgeable and experienced personnel that can aid in your understanding of treatment strategies.

Use the Internet With Discernment

The internet is a useful tool. There are countless websites offering education and verifying alternative therapies. You can read several family accounts on treatment strategies used. Networking within this community gives parents hope. Parents can find a doctor well versed in treatments not commonly used but are effective.

Many neurological disease’s, including autism and ADD/ADHD are intimately tied to diet. Fats and oils must be in the correct balance; carbohydrates and  protein must be adequately digested for maximum benefits. Sugars and artificial sweeteners must be eliminated. Artificial coloring and monosodium glutamate (known as MSG but many times is not labeled or under different names) have profound effects on the brain of a child and should never be used.  These are excitotoxins known to cause brain cell death. Other cause and effect relationships in chronic illness is heavy metal toxicity. Testing for heavy metals is easily performed. Since most vaccines contain aluminum and mercury, these should be tested for and appropriate detox programs implemented.

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. Make a list, ask questions, even challenge the physician who is advocating. Ask for patients who have tried the therapy contact you. It takes effort and time but in the end it pays off. You and your child may find relief. Never give up, not even when someone says your child will never do this or that. Never. There is someone, somewhere that can help. Assistance may come from people you may or may never know but happen to meet by chance. The universe connects people at the right time and is exactly what you may need.

Significant Resources

Because children’s brains develop at a phenomenal rate and learning is essential, listed below are some websites that may help:

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.

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