All About Kali

Kali was born healthy and apparently "normal" on 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 bipolar.  

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".

She 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.

She 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.  

This 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.

Because 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 Kali "normal"?


More about Kali

 

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Last edit 01/18/04