WHAT EVERY PARENT SHOULD KNOW

No one will come to you with a manual to tell you how to deal with your disabled child. In the beginning, look to your doctors for information. Your initial guidance and first source of advice will indeed be from your pediatrician. In reality though, further information will come from a variety of sources — from therapists, support groups, professional advocates and other parents.


USE MULTI-PRONGED APPROACH TO TREATMENT
Colin’s parents adopted a multi-pronged approach to his treatment, gathering treatments from the following areas:

 TRADITIONAL MEDICINE: Use traditional medicines as prescribed by your pediatrician. Use antibiotics when needed.

TRADITIONAL CHINESE MEDICINE: This approach includes the use of acupuncture and Chinese herbs. Acupuncture works to restore the interruption of nerve pathways that have been blocked by injury. It is accomplished by stimulating certain points along the pathways (meridians). Tiny amounts of herbs are mixed in Colin’s food, daily. The doctor determines the exact proportions of these natural herbal preparations for Colin.

TRADITIONAL THERAPIES: Have your child evaluated to see which of these traditional therapies may be helpful. From the earliest days after his birth, even while in the NICU, Colin had a physical therapist to help him overcome his birth injuries. This therapy continued at home followed by occupational therapy, vision therapy and, eventually, speech therapy.

 ALTERNATIVE THERAPIES: Explore alternative therapies and augment the traditional therapies with alternatives. Colin’s mother investigated the use of craniosacral therapy and therapeutic horseback riding. Through the use of the Internet, Colin’s father investigated the use of intensive physical therapy and hyperbaric oxygen therapy, even getting into the hyperbaric oxygen chamber when Colin underwent the treatment. Colin’s treatment was and continues to be a team effort, involving his parents, sister Claire, caregivers, doctors and therapists.

RESEARCH: Stem cell therapies and other treatments under study and development may offer significant help to your child. That is our hope for Colin.


CONTACT YOUR REGIONAL CENTER
In Colin’s case, his pediatrician recommended contacting the California State Department of Developmental Services Regional Center in Los Angeles. The Regional Center provides services and supports to individuals with developmental disabilities. These disabilities include mental retardation, cerebral palsy, epilepsy, autism and related conditions. The regional centers serve as a local resource to help find and access the services and supports available to individuals with developmental disabilities and their families.


    ENGAGE SERVICES OF AN ADVOCATE
    Consider engaging the services of an advocate. An advocate is a professional who is aware of all the resources available to your disabled child and how to apply for them. This service is especially helpful when you plan your child’s Individual Education Plan (IEP) with the school district (see below “Reach out to School District”). While the services of the advocate may be costly, the expense may well be justified.

      BE PROACTIVE AND PERSISTENT
      Be proactive and ask a lot of questions. You may get more information from therapists than from doctors. Solicit from and be open to information from a variety of sources. Therapists and other parents can be as significant as doctors or hospitals in the development of a plan for the care of your child. Be persistent! Never take no for an answer.

      MAINTAIN A HEALTHY ENVIRONMENT
      Many disabled children have weakened or compromised immune systems - keep a very clean environment. While your child is young, do as much therapy in home setting as possible. It will be much more comfortable for your child and will minimize exposure to germs from other children. Insist that visitors and family members wash their hands or use anti-bacterial gels often. Keep your child out of crowded locations during cold and flu season.

      PURSUE FINANCIAL OPTIONS
      See if you are eligible for Medicaid. Do not be put off by the financial requirements for Medicaid. Medicaid is available for both financial reasons and also by Medicaid Waiver for those children with specific disabilities - such as, Colin, who was diagnosed with Cerebral Palsy. If your child qualifies, you may receive a wheel chair, seating equipment, physical therapy treatments and other services at no cost.

        REACH OUT TO SCHOOL DISTRICT
        Reach out to your local school district to create an IEP for your child. As an example, Los Angeles Unified School District (LAUSD), Division of Special Education has provided Colin with a home school teacher from the Carlson Home/Hospital School, as well as with some significant therapeutic equipment. See Blogworthy, Rifton Stander, for example.

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