|
The question addresses a parent's worst fears, the secret shameful terror that his or her child has autism, a broad-scale developmental disorder with multi-lettered euphemisms (ADHD, PDD-NOS) that add up to an often impossibly difficult, uncommunicative, behaviorally challenging, nay exhausting, offspring whose needs tend to supercede all other family necessities. Having an autistic child can be a lonely, misunderstood path, with blaming and self-blaming parents and relatives on one side and, on the other, professional battalions either curiously eager or frustratingly reluctant to diagnose, pigeonhole, and rush to treatment.
Nancy D Wiseman is the mother of a nine-year-old autistic daughter, and founder of First Signs, Inc. She declares that "The truth remains that no matter how good your pediatrician is, you are your child's best observer and greatest champion. You are the gatekeeper."
Wiseman offers a comprehensive list of developmental milestones for children's development, and red flags for parents who suspect that something is amiss: "no babbling by twelve months, no words by sixteen months, any loss of speech or babbling, or of social skills, at any age." She has generously collected many real-life parent stories such as this: "My daughter had enough normal behavior that she came in under the radar. For example, the doctor asked how many words she had, but he didn't ask how she was using the words. And I told him about how she liked to line up toys, but I didn't think to clue him in to the intensity - that it was 24-7."
The book describes what kinds of tests will be required to arrive at a final diagnosis if you suspect autism, how to prepare for the tests, how to deal with stressful encounters with professionals, what alternative medications and methods other parents are trying, how parent meetings are conducted. It also acknowledges the tremendous toll that an autistic (or any disabled) child can take on family and relationship. The divorce rate among families with developmentally disabled children is notable, and the break-up of families already under stress (generally leaving the mother to fend for herself and the needy child) is another marker for long-term failure for the child.
However, the author's child, Sarah, is a small ray of hope to all parents with autistic children. Progress can be made, change can be brought about by longsuffering and a hard look at the situation. "Whatever you are suffering - whether it's grief over the loss of a perfect child, guilt over your perceived parental shortcomings, or anger at your child - you are not alone. Even if you have never heard another parent share those feelings, they are common."
Wiseman herself has tried, for Sarah, chelation, auditory integration therapy and hippotherapy (horse-back riding). Sarah's needs cost the family "well over $100,000, much of it for experimental biomedical therapies that insurance companies don't cover." Yet she would judge every penny spent and hour of sleep lost to care for Sarah as worth it - as would most parents of disabled children.
Wiseman's
First Signs Inc is a national non-profit organization that concerned parents can
contact with further questions. This and other resources are listed at the end of the book.
|
|
Could It Be Autism?: A Parent's Guide to the First Signs and Next Steps