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Alex does not talk. Essentialfats,
2002. $39.95. Send a check + $5.95 for S&H to PO Box 10187 Gaithersburg MD
20898.
This unique book contains the
experiences of two parents helping Alex grow. We emphasize solutions. No parent
is immune from children’s problems. We do not want to give up. This book is a
How TO Book. Your guide to guerrilla tactics when needed to help you fight the
system and help your child.
Alex’s mother is a young woman with
a college degree in science. She started to speak very early and soon learned
to read and write. She attended a high school for children with special
talents.
Alex’s father is a physician with a
PhD. He started to speak very early. As a teenager, he was tested and found to
have the highest measurable IQ. He started teaching college mathematics at age
16. He got an MS in physics, an MS in Math and computers, an MS in psychology,
a PhD in experimental and mathematical psychology. Then an MD with special training
in laboratory medicine and blood testing. None of Alex’s parents have any known
history of genetic abnormalities or family members with developmental delays.
Alex looked like a normal and
healthy child. He was born practically smiling. By 3 months, he looked advanced
and very cute. He spoke his first word at about 6 months. By 9 months, he was a
champion crawler and was getting ready to walk. By 12 months, he could
practically run, climb, etc. He quickly learned to eat using his hands and
silverware, skipping bottle and baby foods. Soon he was making baby noises and
seemingly on his way to Harvard on intellectual and athletic scholarships.
Unfortunately, Alex slowly stopped
talking and began to regress. By 24 months, he spoke about 2 words. He did not
say Daddy or Mammy or similar words. This book is our struggle to teach Alex to
speak. Our struggle to fight a bureaucracy bent on endless evaluations and
diagnostic tests but little treatment. Alex was eventually diagnosed with PDD-
no known biological cause. This is a fancy way of saying that Alex was
developmentally delayed or disabled.
We explain the different types of
tests available, including new ones poorly known to many doctors. We discuss
treatment approaches. What seems to work and what does not. How to spend your
money wisely and avoid scams. What steps to take to prevent the bureaucracy
from taken over your life and stopping your child from reaching his/her full
potential.
The book describes Alex life on
typical days. What we did. What works. What does not work. How to get help.
Each chapter has a section on Alex’s life, the mother and the father’s
perspective. We tell you what the doctors said. What the therapists did. Our
daily struggle with them. We give you prototype letters and procedures to fight
the system.
Cue cards, plastified. Cards
containing words and signs that you can use to educate your child or
communicate when s/he has a communications problem. Set I of 100 words for $7.95 + $2.95 S&H.
Videotape
of Alex learning things. Useful to teach your kid or keep him entertained. Most
useful for children under 4. My First Learning Steps $18.95 + $3.95 S&H.
Note:
some of these products are still under development. If you place the order now
we will deliver an early version as soon as it is completed. Unfortunately, we
do not have the resources to offer refunds. All sales are final. Money received
is used to maintain this web site and educate parents. Contributions are
welcome.
Diagnosing a
Child with developmental delays
Purpose of diagnosis
Insist to
your health provider that s/he explain the purpose of diagnosis. Some
diagnostic tests are useful primarily for research purposes. We like to tie
every diagnostic test with a treatment decision. The test should help identify and
select a particular treatment. When treatment is the same regardless of the
outcome of the test, the test is of dubious value. Even if insurance covers the
test and the test causes no harm, it takes time away from teaching the child.
Diagnosis
is important to identify the source of the problem and the likely impact the
problem (cause) has on the child. Parents must realize:
What we teach a child = Child’s ability to learn
Any
developmental problem is caused by either genetic or acquired factors. We all have
different genes from each other. Unfortunately, some kids have genes that are
very different functionally from those of most people and they cause
significant impairments. These are called genetic abnormalities. Sometimes,
because of problems during pregnancy or birth, or accidents after birth, a
child develops an abnormality that is not caused by unusual genes. These are
called acquired abnormalities. When the abnormality exists at birth it is
called congenital. Most often congenital abnormalities are genetic or caused by
drugs used during pregnancy or problems at birth.
Abnormalities
fall into two major groups: physical and biochemical. A physical abnormality is
an abnormality that can be seen or that is caused by an obvious and major
change in some body part. These can be heart abnormalities, body parts
abnormalities, etc. Although many of these physical abnormalities are caused by
abnormal genes, sometimes an event during pregnancy, such as an unusual diet or
unusual foods can cause the body to develop abnormally. Because millions of
instructions must go right for the body to build itself properly, any random
problem can cause some physical abnormality.
A
biochemical abnormality is usually genetic. This means that some chemical
reactions are not working right in the body.
Kids with
genetic abnormalities usually have both physical and biochemical abnormalities.
Kids with acquired abnormalities may have some physical changes but otherwise
most of their chemistry is fine. For example, a child could have some trauma
that damages a part of the brain, but otherwise the rest of the body functions
are fine. Genetic abnormalities tend to be symmetrical and affect many
different parts of the body. Because some genes are abnormal, all cells have
those abnormal genes. Any cell that uses those genes produces abnormal
chemicals (proteins or hormones) that cause abnormal chemical reactions.
Whenever
possible, one should diagnose a biochemical abnormality and determine if the
defect is genetic or acquired. Biochemical abnormalities can sometimes be
corrected with special drugs and diet. Minor physical abnormalities can
sometimes be corrected with surgery.
Understanding
the nature of the abnormality helps as predict the type of problem the child
will have as s/he grows older, and the type of therapy s/he will require.
Unfortunately,
most of the time nothing is found. The cause of the delay is not obvious but it
is hidden. In that case, we recommend a special blood test for fatty acids
invented by Dr. Siguel that helps identify whether or not the child has a
genetic abnormality.
If there
is a genetic abnormality, the likelihood of full recovery is small. The goal of
treatment is to provide the child with the best therapy to match his or her
abilities.
However,
if there is no known genetic abnormality and the child appears normal, the goal
of treatment is to provide the child with a very rich and special environment
to turn on his innate abilities and give him or her a push to become normal. A
special effort early on, between 12 and 36 months of age, may overcome the
cause of the problem and help the child achieve fairly normal performance.
However, one must be careful not to push to hard beyond the child’s ability to
learn or else the child may regress even further. Thus, understanding the cause
of the delay and the child’s abilities is essential to prescribe the optimal
treatment plan.
Form for child/family outcomes related
to child development
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© 1998-9 Edward Siguel. All rights reserved |
modified 10/15/01 |