Saturday, February 20, 2010

Parent Support Group Meeting 2010.02.16, Parent Sharing Night

Though a smaller group than the last meeting, the night still flowed and even went into overtime, ending at 7:30pm instead of the usual 7pm. Since the discussion flowed from one topic to another, I have left this in outline form.


 

  • In 2013, DSM5, which defines mental disorders, will define all terms such as Aspergers Syndrome and PDD-NOS (pervasive developmental disorder not otherwise specified) as Autism Spectrum.
  • Transitional services needed
    • A "CHiP" program was mentioned and I didn't catch any details about what it is and its connection to autism.
    • IDEA was also mentioned in group, though it was not clear if this was a federal law or a program
  • Pragmatics, living in the literal, and emotional disregulation were discussed.
    • Emotional regulation is "keeping it together" or controlling your emotions instead of emotions controlling you.
    • Emotional disregulation is "losing it".
  • Autistic brain, flexible brain, and comorbidity with other conditions such as bipolar were discussed
    • Comorbidity is having two or more (serious?) disorders. (Who originally came up with the term "comorbidity" anyway? Sounds painful! - jb)
    • Obsessive Compulsive Disorder (OC or OCD)
    • Adaptive behaviors (flexible brained).
      • You really don't want adaptive behaviors to get in the way of functioning socially.
      • You DO want to adapt instead of being rock or sticky brained.
    • Autistics (those on the Autistic Spectrum) are driven to look for sequences
    • Those on the Spectrum also have sensory issues.
      • lint or sock fuzzies feel like fire ants
      • sensory based: hyper- or hypo- (over or under) stimulation sensitivities
      • Stephen Shore: sensory issues and adaptation, http://bit.ly/bJGJpV
    • Amazing mind and social miscues
    • Flat affect – "this IS excited".
  • Being able to voice needs and concerns
    • "I hear you talking but I didn't understand a word you said…."
  • Maturities (developments) of the mind and age show up in behaviors. Is this behavior because of the age/brain development or the disorder?
    • Hormonal changes in response to stress, worse at certain ages.
      • Cortizol and other stress related hormones
  • The need for Special Education teachers certified in autism was discussed.
  • In California, the Letterman Act established Regional Centers to help disabled children and adults.
    • This is a good and bad thing. If you are accepted by the Regional Center system, then the state funds for programs and support are guaranteed by law. Whether or not you are not accepted, other agencies may refer you to the Regional Centers to get support.
  • Parent issues were discussed
    • Conservatorship
    • Burn out
    • IEPs
    • Adversarial education system
  • Neurotopia, a biofeedback program for autism is being tried by at least one set of parents
    • Awareness of thought patterns leads to calm or sleepy state
      • Brain maps
      • Brain waves
      • Electrodes
    • Expensive, and not usually covered
    • A checklist of behaviors may be useful in tracking progress
    • For this child, some self stimulation was reduced
    • Visits
      • 6-8 visits are suggested to see a difference
      • Recommended 20, then re-evaluate
      • Then at 30, re-evaluate
      • Then at 40, re-evaluate
    • Compared to some studies and programs at the Drake Institute
    • Teaching brain to be aware of certain areas stimulates certain brainwave activities.
    • Sleep issues: if there is not sufficient sleep pattern to fully experience REM sleep, then the brain (and hormonally, the body) will not fully recharge.
    • Biofeedback is not shock therapy. It does not deliver electrical impulses but rather senses the electrical patterns in brain.
  • Books.
    • Socially Curious and Curiously Social, Garcia-Winner -- for teens, http://www.socialthinking.com.
    • Ask and Tell, ed Stephen Shore
    • Developing Understanding, Temple Grandin, Duffy
    • Making Sense of Sex, Atwood -- sex, hygiene, sensory stuff, social aspects
    • Voices from the Spectrum, Shore
    • Can I Tell You About Aspergers Syndrome, Jude Welton -- basic
    • Freaks, Geeks, and Apergers Syndrome -- written by 13 year old, basic and fun
    • Beyond the Wall, Stephen Shore -- personal experiences with autism and Aspergers
    • Aspergers and Self Esteem
  • Resources
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