Kali was born healthy and apparently "normal"
June 29 1993
I was the oldest of six
children and had ample opportunity to observe the growth and development
of my younger siblings. Some years later, I had two other children in my
life, Joel and Alicia. Joel lived with me until he was about one
and a half years old. He was quite precocious and explored his
environment daily. I adopted Alicia as a new born. She was 3
days old when she came to live with me. She did not develop as
quickly as Joel. Years later Alicia was diagnosed FAS (Fetal
Alcohol Syndrome). Alicia was not "normal" and
neither was Joel. Joel would later in life be diagnosed
Kali was the
least "normal" of the children in my life. She was unable to suckle
and had to have formula squirted into her mouth until she could eat cereal
and drink from a cup. Kali had virtually no muscle tone. She
wobbled and flopped instead of sitting up, even at 16 months. Kali had
to be trained to crawl. By us manually moving her knees and hands
in a typical child's crawling fashion, she was eventually able to do so
herself. It took a few months and by the time she was two she
could crawl about. She had her style of crawling and could sit up on her
own. It is hard now to remember when she achieved her
milestones. Living with Kali was like living in slow motion.
Everything Kali took longer than "normal".
was enrolled in early intervention programs and began school when
she was three. She had learned to walk by then but preferred
crawling. She would drop to the floor in supermarkets, parks, and restaurants.
Her school insisted she wear a helmet to protect her head should she
fall. During a teacher visit to the home when she was four they also
noted her inability to walk well. That was unusual as she walked
most every where at home. As was her "normal"
routine at that time, she climbed on the couch, ran across it, opening
the curtains to bang on the window. She wobbled and looked like
she was going to fall. "Normal" Kali.
was considered for research in Angelman Syndrome. Angelman
Syndrome is associated with damage to the X chromosome,
especially in the area known as Fragile X. Doctor Angelman
identified it in France in the 1950s. Kali has some of the
features of the syndrome. Very low IQ, generally happy and
smiling, webbing in hands and toes, perhaps Kali has micro
deletions in the X chromosome but no evidence of major damage was
found. Kali was diagnosed presumed Angleman Syndrome.
diagnosis was not useful to insurance companies nor the school.
Nor was PDD (Pervasive Developmental Disorder). So, Kali was diagnosed
Autistic. She has some of the qualities associated with low
functioning Autistic children. She likes lights. And can
easily entertain herself staring at a light bulb or a reflection of a
light in a mirror. Kali lives in her own world. A world of
sounds and colors and shapes. While raising her, I felt as
though I was part of the house to her, a piece of moving
furniture. She did not respond to emotional stimulus nor did she
like affection and cuddling. The stimulus of being touched was too
much for her, except when she was very sick.
she couldn't speak and was generally happy it was difficult to tell
when she was hurt or sick. Her first ear ache was discovered
by noticing that she wasn't eating normally and she had a slight
fever. A few days later her fever went to 104 degrees and required
a trip to a health care center where her ear infection was
identified. She didn't get sick real often other than ear
infections. Interestingly, after a high fever, she showed growth
in cognitive capabilities. This occurred several times during the
first eight years of her life. I am not sure what the mechanism
might be for this growth. Is it "normal" or just
More about Kali