Sotos Syndrome

Comments on Behavior

© Walter Gilbert 2001

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These are comments included in the surveys. In some cases they have been slightly edited for clarity. The numbering is for convience of reading only, the numbers do not represent a particular child; that is, comment number 16 on this page does not necessarily represent the same child as number 16 on another page of comments.
  1. hand flapping, 5-7 meltdowns day without brushing program, jumping off wet wipe box for 45 minutes straight, repetitive actions, hard to transition, can't touch his toys at table or meltdown
  2. doesn't react to his name, is not well balanced, doesn't play with toys much
  3. Compulsive repetetive routines
  4. very hyperactive
  5. Difficulty expressing feelings, needs... Earlier puberty has been a major difficulty
  6. obsessive behaviours like closing doors and windows, tidiness.
  7. plays same games with the same things every day.
  8. She used to be afraid of everything - we just returned from Disney World where she did almost all the rides (for the first time) and she even amazed herself that she was not afraid.
  9. does not imitate: will not clap hands or wave "bye, bye" those simple things other children his age do; difficult sometimes to get his attention, if we do it is usually very short
  10. Very adult oriented, can take or leave other kids most of the time. Gets fixated on things - sometimes for days, sometimes for months - this whole summer was spent fixating on the weather (worry over thunderstorms)
  11. delayed social skills; highly distractable. needs help to stay focused on activities. doesn't understand social boundaries (eg. will tell the store clerk 'i love you'). highly hyper-sensitive to personal space being violated. (eg. gets very upset if another child brushes against her while standing in line at play school or while sitting at circle time.) very neophobic (ie. overly-cautious about new things or places). this manifests itself in a couple ways: - is a very picky eater - has to be introduced to new things/places/ideas in teeny-tiny steps
  12. She doesn't like change of routine,unfamilliar surroundings or large groups of people or children.
  13. likes to be the center of attention and needs someone to pay attention to him all the time. Plays the fool a lot but I think this is when he doesn't understand what is asked of him
  14. some autistic type behaviour. Lives in his own world although has emerged a little in the past 18 months to pay a little more attention to his brothers . handflaps a lot especially when he's excited has no desire to conform with others in a group. doesn't try to enter into contact with others, only recently accepts that other children at school approach him
  15. likes order and to know what's going on, is getting better at accepting change in routine extremely addicted to tv and movies
  16. Kicks legs and waves arms excessively when excited; still unable to sit, feed, etc
  17. Phases of childhood seem to take double the time to 2-3 X longer than usual to resolve. like the No phase, the Mine phase, the Why phase, etc...
  18. has had some social problems-- she says "I don't think people dislike me, they just don't think of me" is still somewhat tactile defensive-- a slight touch feels like a pinch to her--this has improved
  19. lacking socialising skill
  20. becomes Obsessive about things. Repeats things over and over. Needs to have a regular routine. ADD
  21. Way he walks (low muscle tone) no behavoral problems likes puzzles jumping on tramp drawing/painting etc
  22. nervous habits ie: biting hand, picking at eyebrows (not constantly-waxes/wanes)repetitive questions, repeating a space of vidoe tape over & over or watching a repetitive TV channel ie: DISH network promo channel, lack of focus
  23. non-social, prefer to be alone, autistic
  24. Already showing obsessive/compulsive bahavior, we have to keep her focused
  25. Shows no interest in colouring, board games, or crafts
  26. Obsessive behaviors: talks about one thing constantly; rocking
  27. Cried a lot as a child thru puberty. Puberty was more like a girl's experience; very autistic-like til age 12-13.
  28. OCD
  29. Repeating dialog of numerous movies; a need for exact order
  30. Perseveration (extreme repetition); extreme fear of pets tho never bitten or growled at
  31. Memorizes data; repeats himself; worries excessively; won't drop a subject once on it; adapts poorly to change
  32. Bites finger nails; pulls toe nails off
  33. Can be extremely single focused; will awaken in a.m. remembering what he was asking for the night before
  34. Many phobias when younger: bugs, movements, Santa, clowns, etc.
  35. Play style is different, well thought out, and intence focus. Memorization is remarkable
  36. Could memorize certain things well (Bill Cosby) but could not retain spelling or math facts; in LD classes for all subjects
  37. She had so much anxiety, especially around medical per. or new situations that she had to go on Paxil. It helped a lot. Also very obsessive!
  38. Hard to say since we have just realized that he is much more mentally retarded than we first thought
  39. He has a phobia of DIsney movies. Shouts profanities in temper tantrums