WHAT EVERY PARENT SHOULD KNOW
We have learned that no one will come to you with a manual to tell you how to deal with your special child. Each birth and problem that may arise from that birth is different. Your pediatrician offers the first source of advice. Later comes well meaning friends, other parents, perhaps, support groups. You are so in shock that something could be wrong with your child that you probably will not want to read the manual if there is one, or listen to words of advice. However...there is a positive way to help these kids.
EARLY DEVELOPMENTAL ASSESSMENT
We have learned that early intervention can make a huge difference anytime you have a child that is at risk for mental and physical disabilities due to a difficult birth - perhaps with injuries, a neonatal illness such as spinal meningitis, low birth weight or seem to be lagging in reaching their developmental milestones.
We have learned there are centers, many connected to University hospitals, that provide a team effort to assess these children, detect problems and take actions - early actions - that can prevent or ameliorate problems that arise.
We have learned that there are people - all in one place - that can make the difference. These people include: Neonatologists, Developmental Pediatricians, Neonatal Pediatric Nurses, Social Workers, Dietitians, Psychologists, Physical Therapists, Occupational Therapists, Speech and Language Pathologists.
The Early Developmental Assessment Center at Children’s Hospital of Orange County (CHOC) is an excellent example of a center that provides these services.
USE MULTI-PRONGED APPROACH TO TREATMENT
Though Colin eventually went through an early intervention assessment, it was not until almost a year after he was born. It was a time of not knowing what really was wrong and wanting to do everything that was right. There were evaluations and treatments by many professionals and still no definitive answer as to the path to take. So 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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