lessons learned
my daughter and I went to a funeral yesterday for a boy a few years older than her who died from a siezure. she didn’t know him very well, but had seen him over the last year at the bus and in the “sensory room”. From what my daughter could explain to me the boy was much less verbal than her. Being new to the school and the autism program she’s just starting to understand how to communicate with and respect the strengths and individual qualities of the kids who don’t communicate as well as she does (we don’t use the term “low functioning”) so she hadn’t interacted with him much. she was quite shocked and upset about someone her age dying. In her own spiritual way she talked a lot about reincarnation and what animal he might be now.
then she said something to me, and eventually to everyone she encountered- “you know he taught me a good lesson…..i should be nice to everyone in my life because you never know when someone will die, you never know if it’s the last time you’ll see them”.
melatonin worked for us!
Melatonin Helps Autistic Children Get To Sleep
Reuters Health – Three milligrams of melatonin at bedtime can effectively treat sleep problems in children with autistic spectrum disorder, fragile X syndrome, or both, according to a study reported in the current issue of the Journal of Clinical Sleep Medicine.
“Melatonin can be considered a safe and effective pharmacologic treatment in addition to behavior therapies and sleep hygiene practices for the management of sleep problems in children with autistic spectrum disorder and fragile X syndrome,” the study team concludes.
Melatonin is a naturally occurring hormone, derived from the amino acid tryptophan. The hormone is important in regulating circadian rhythms, or the “sleep wake” cycle, and the reproduction cycle in mammals.
Fragile X syndrome is an inherited form of mental impairment resulting from a “fragile,” or broken site, on the X chromosome. The syndrome affects 2 to 5 percent of those with autism spectrum disorder, and symptoms of autism are common in children with fragile X.
Sleep problems are reported in up to 89 percent of children with autism and 77 percent of children with fragile X syndrome, Dr. Beth L. Goodlin-Jones, of the Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute at the University of California Davis Health System in Sacramento, and colleagues note in their report.
In a 4-week study, 18 children, ranging in age from 2 to 15 years, with autistic spectrum disorder and/or fragile X syndrome received either melatonin (3 milligrams) or placebo each night for 2 weeks. The children then “crossed over” to the other treatment group for 2 weeks.
Data from 12 children who completed the study showed that treatment with melatonin was associated with significant improvements in total night sleep durations, sleep latency times and sleep-onset times.
Specifically, Goodlin-Jones and colleagues report that the average night sleep duration was 21 minutes longer with melatonin than with placebo, the sleep-onset latency was 28 minutes shorter, and the sleep-onset time was 42 minutes earlier.
“Sleep onset problems at the beginning of the night are very troublesome for children and their families,” Goodlin-Jones noted in a prepared statement accompanying the study. “Sometimes children may take one to two hours to fall asleep and often they disrupt the household during this time.”
“The results of this study,” she and her colleagues conclude, “suggest that melatonin is an effective treatment for sleep problems in children with autistic spectrum disorder and fragile X syndrome, a finding that is consistent with previous studies of children with autistic spectrum disorder and developmental disabilities.”
SOURCE: Journal of Clinical Sleep Medicine, April 15, 2009.
reflective listening/theory of mind
belle struggles with people disagreeing with her when she complains about other students.
Her and I talk frequently about other people’s opinion, some theory of mind stuff about how others can feel differently than she does, how it feels for her when she thinks someone isn’t listening to her and how she can express that she’s not feeling listened to if someone gives their opinion instead of really listening to hers. she’s been watching nanny 911 and sees the nanny mediate between kids and their parents to help the kids express those types of feelings instead of acting out and then we have been practicing together.
It’s best to reflect what belle is saying and try to avoid:
- agreeing that the other student is grouchy or a problem (or “hates the world”?)
- disagreeing that the other student is a problem and saying that “we love him, he’s so sweet”
- ignoring belle (unless reflecting doesn’t help)
- saying that she’s wrong or interpreting it wrong
Saying “it sounds like you feel____” or ” belle do you feel___?” or “sometimes it can seem like_____” or “is he always_____?”
and even asking belle if she’s feeling listened to and prompting her to ask to be listened to if not really helps!
***nanny 911 is also great for talking about how people with different facial expressions and in different situations might be feeling! she’s putting herself in other people’s shoes!
We even had a chance to talk about why she doesn’t like praise and how important it is to hear more good than bad from her teachers and that’s why they praise her so she should think about that when she hears it. We’ll keep working on that one!
Eustacia Cutler/ Temple Grandin
I’m reading Eustacia’s book A Thorn in my Pocket and love it! I see her speak this thursday and will let you know what she says, but for now get her book and read it. I loved chapters 7 and 8 especially. She’s so practical, intuative, passionate and loving. She was raising Temple during the dark ages for autism, but had and used many resources to help them both survive. A good lesson.
i should have thought of bugs before
Why didn’t i think to send dried edible bugs to school with my daughter before this!!?? It was a really fun way for her to connect with others at school, seeing who would eat the bugs and having lots of laughs about who tried but couldn’t. Where to get them? the specialty candy store or novelty shop- enjoy!
para meeting – this is the info that i thought was important to share
Family –Mom and Dad/adoption. Relationship with brothers/girlfriends, sitters. They are for fun, not “work”- outings, movies, museums, treats, shopping etc., but none of that would happen if belle wasn’t on her best behavior.
Behavior at home- happy, cooperative, polite. Doesn’t earn something for everything she does, but every privilege she has has been earned at some point. She does whatever I want her to do (but I try to make her think it’s her idea).
Words have a different meaning to belle- to us “ok” can mean “maybe, whatever, you’re crazy, ok, we’ll see, we will discuss it again later when you’re not so upset, or even no”, to her “ok” means “OK” that’s it.
Complaints- give me clues as to what she’s thinking and feeling, it’s my job to figure out what they mean ( I don’t take them at face value). I listen, not argue.
Theory of mind- can effect belle’s ability to cooperate, comply, show her work, accept praise, sensor her words, or consider the effect her words or actions have on others. She can’t put herself in your shoes, especially when she’s upset.
Presume- her love of learning, desire to get along, desire to cooperate, that she is a fun-loving kid. She is happy when everyone’s happy!
Consistency, rules, routine = happier Maribel
