early intervention
Road Trip
Special Olympics, the equestrian events, are back in Bryan-College Station again this year. (They used to rotate around the state a little better, but I’m not surprised that some think Aggieland is the center of the Texas universe.)
Sam shared the dates last night and we went ahead and book his room.
In years past, I would wait until closer to the date, always thinking that there would be room at the inns. But, despite my thoughts that Special O isn’t the kind of event that brings the masses to town, local hotels would be nearly sold out by the time I booked.
I only made that mistake about six times, and then I stopped.
I’m teachable, too.
Cutting, pasting, passing it on …
From The ARC
The Screening Room – Critics Choice
Facilitated by Charlene Comstock-Galagan
Friday – March 25, 2011
9:00 am – 11:00 am
Location: To Be Determined
Join Charlene for a thought provoking discussion and screening of the latest and greatest
visual media and their deepest messages about inclusion and the meaning of belonging in
the 21st century. March is ID/DD Awareness Month. You don’t want to miss this opportunity!
Special Education – The ARD/IEP Process
Presenter: Charlene Comstock-Galagan
Friday – March 25, 2011
12:30 pm – 4:00 pm
Tarrant County – Specific Location: To Be Determined
Determining the special education services for a child/student is done through a strategic,
step-by step planning process. A process that crumbles if the foundation is cracked, a
critical step in planning is missed or out of order, or planning takes place without thoughtful
discussions based on the individual needs of a child/student.
DON’T MISS THIS OPPORTUNITY!
Charlene will review the ARD/IEP Planning process and share tools and strategies that
have produced positive outcomes for students who have an Individualized Education Program – IEP.
· The ARD/IEP agenda
· The purpose of assessment beyond eligibility
· Integrated and measurable goals and objectives
· Modifications & accommodations (across school settings)
· Supports for or on behalf of the student
· Placement decisions using a Planning Matrix
· Prior Written Notice… and more!
Employment For ALL – 2 Sessions (Customized Employment & Discovery, The Process)
Session 1: Customized Employment, an Overview
Presenter: Michael Callahan, International Consultant on Employment & Transition
Saturday – April 2, 2011
9:00 am – Noon
Location: To Be Determined
DON’T MISS THIS OPPORTUNITY! Participants will leave inspired and empowered with information
and strategies that make employment a viable option for persons once thought to be unemployable.
Session 2: Discovery, the Process
Presenter: Michael Callahan, International Consultant on Employment & Transition
Saturday – April 2, 2011
1:00 pm – 4:00 pm
Location: To Be Determined
The Discovery Process is a strategy used as a substitute to comparison-based testing procedures
in that it utilizes already-existing information rather than information developed through formal
assessment methods. It takes into account the applicant’s entire life experiences rather than single
instances of performance.
DON’T MISS THIS OPPORTUNITY! Mr. Callahan will review steps need to complete the discovery
process. An interactive process that allows the provider to get to know the applicant and to assist
in identifying personalized preferences and conditions for employment as well as individual
contributions to be offered to employers.
Person Centered Thinking & Plan Facilitation
Presenters: Laura Buckner, M.Ed., LPC – University of Texas Austin & Jeff Garrison-Tate, M. Ed. Texas A&M University
May 9 -10, 2011 ▪ 9:00 – 4:00 │ Person Centered Thinking
May 11 – 12, 2011 ▪ 9:00 – 4:00 │ Plan Facilitation (Prerequisite – Completion of Person Centered Thinking)
Both 2 day sessions will be held at TCU – Dee Kelly Alumni & Visitors Center – Ft. Worth
2820 Stadium Drive – Ft. Worth, Texas 76109
Space is limited & registration is required!
For additional information about the sessions above, please refer to the attached fliers.
If unable to open the fliers please visit: www.arcnetc.org.
More recipes for kid stuff
Two ways to make finger paints:
Mix liquid starch, 1-2 tablespoons soap flakes, and food coloring in a bowl, whip with a beater. Fill small containers with mixture and add more food coloring to brighten.
Mix 3 tablespoons sugar, 1/2 cup cornstarch together and add 2 cups cold water. Cook over low heat, stirring constantly until well blended. Divide among four or five small cups, add drops of food coloring to color and a pinch of detergent to facilitate clean-up.
Life, richly lived
More thoughts on Guidepost Five …
Catherine Maurice’s legendary tome, Let Me Hear Your Voice, hit the bookstores not long after Sam was diagnosed. Her book brought to life the groundbreaking research that discrete trials, a special kind of teaching by applied behavior analysts, helped kids with autism learn.
The only problem was, to “replicate” it at home, you had to have someone working with your child 40 hours a week on tasks like “give me the red block.”
I still roll my eyes at that possibility. Mark and I didn’t have that kind of money, first of all. And if we did, there was no one with the proper training to hire. It was still too new. And, most importantly to us, subjecting Sam to 40 hours a week of discrete trial training felt tantamount to abuse.
I’d read Kaufman’s book, “Son Rise,” too. They locked themselves in the bathroom with their child to effect the same sort of thing at home. We’d recognized there was ethical boundary in a treatment choice, just considering the way both those families tried to deliver what was known to be effective.
I fell into Maria Montessori’s method and decided we could approximate the 40-hour-a-week thing by changing our home to be like a Montessori school. Then, we spent every minute that we could with him as he played. In other words, naturalistic teaching. LOTS of naturalistic teaching.
I never logged the hours. But when he started kindergarten, I suddenly didn’t know what to do with myself with all these long, free blocks of time. In the end, it was probably more than 40 hours a week, but not one as a discrete trials.
Absolutely, the treatment choice affects your quality of life …
Parental car wrecks
After driving to Clark Airfield in Dish for a news story today, I remembered an important facet in pilot training that helps keeps us air travelers safe — identifying and rooting out hazardous attitudes in decision-making.
(a) Tell them to “cool it” for butting in. (macho)
(b) Start banging the indicator to get it working. (impulsive)
(c) You think that a thorough preflight check is something thought up by bureaucrats just to waste time. (anti-authority)
(d) You say that nothing dangerous will happen on the flight. (invulnerable)
(e) Everyone continues to become upset, but you do nothing, because you feel there is no use trying to calm them down. (resignation)
Of course, a good pilot would abort the flight and return to the departure area.
With just a little imagination, we can re-work this scenario for a parent or caregiver making decisions about a treatment choice.
For example, “You notice that a treatment is draining your family’s finances or appears not only to not be working, but also is beginning to hurt your child. Nevertheless you continue. Your spouse/parents/friends feel strongly that you should discontinue the treatment and return to a previous protocol. You then become upset and …”
(a) Tell them to “cool it” for butting in. (macho)
(b) Start banging on your insurance provider to pay the bill, or other caregivers to get the treatment working. (impulsive)
(c) You think a thorough evaluation of the treatment is something thought up by bureaucrats just to waste time and deny resources for your child. (anti-authority)
(d) You say nothing dangerous could happen during the treatment (invulnerable)
(e) Everyone continues to become upset, but you do nothing, because you feel there’s no use in changing now. (resignation)
When a diagnosis does not predict
(first published 2/20/10)
A dear friend of Mark’s clipped an op-ed piece for me from The New York Times earlier this month. Another person might have sent me a link, or emailed the essay, but I liked Mary’s hand-written note and her careful clipping, which included the date at the top of the paper – a full citation.
In the piece, Roy Richard Grinker, the father of a teenage girl with autism, advocates for the elimination of Asperger’s and PDD-NOS as subsets of autism. He made a good case, and we can leave the outcome of what belongs in the diagnostic manual to the experts.
Grinker also made compelling argument that the spectrum diagnosis gives families little information about the future. Sam was diagnosed with autism when he was 4 years old by a skillful pediatrician. However, I was skeptical of the doctor’s prediction that Sam would be functioning well enough by the time he was 14 or 15 that most people wouldn’t know he had it. Grinker’s experience read much like ours. His daughter had all the symptoms for an autism diagnosis when she was 3 and is now a quirky high school senior.
Grinker wrote that if his daughter were diagnosed now, as a teen, she would likely be diagnosed with Asperger’s instead. We’ve had that same experience with Sam.
A diagnosis doesn’t predict the future, but early intervention – the kind that helps speech and language development, even if it has to be augmented – can have an effect. Well-planned and executed educational therapy is the only proven way to help kids with autism adapt.
And it doesn’t have to be 40 hours a week of one-on-one. We found that a house set up for enriched, structured play – the way Maria Montessori envisioned her school rooms – went a long, long way.
There may be potential in other treatments, but it is incumbent upon parents, like physicians, to first do no harm. That’s not as easy as you think. Parents who fear they are drowning will grasp at straws. We need to get better about communicating to parents what is proven and effective; and help them have faith in incremental progress. I remember how hard it was to have faith that Sam’s small bits of progress each day or week would add up over time. But really, truly, they do.
When Sam was diagnosed in April 1992, there were three other people in the room to support us besides the pediatrician. They swept in with resources and suggestions and contacts in the community. I don’t think I’ve ever fully appreciated what that support meant to us until just now, writing this. Thanks for doing it right, Dr. James Copeland, wherever you are.
April is autism awareness month
A few days after my father first held my newborn son, he whispered to my mother his fear for our baby’s health, a fear that would prove prophetic.
Our oldest son, Sam, was born with autism.
At the time, my mother had cautioned my father: how could he know for certain what Sam’s faraway eyes and fussiness meant?
My father had years of experience as a dentist treating patients with disabilities who lived at the long-term care center in our hometown. He needed more than his hunch before the word could be said out loud.
As a result, my husband and I anguished for almost five years, asking many health and education professionals for answers that could help our son. A developmental pediatrician finally made the diagnosis in 1993.
Since our son’s diagnosis, some doctors have gotten bolder, looking for autism earlier in a child’s life. The Checklist for Autism in Toddlers, or CHAT, has proven helpful screening children at 18 months old. But there is no blood test, x-ray, or magnetic image that marks autism. The physical evidence found in the autistic brain, thus far, can only been seen forensically.
The lifelong struggle with language and social development distinguish the disability, making health and education professionals hesitate to make the call with children. But that also leaves room for Monday morning quarterbacks to ignorantly blame parents for a child’s behavior and dismiss them as brats.
Researchers are now looking for markers as soon as infancy. A fussy baby could have more than colic, and doctors may soon be able to offer something more to frantic parents. Perhaps the most promising study yet has come out of Canada, where researchers are testing eye movements of babies to determine whether that, too, could be a predictor for autism.
However, there remains no cure. Once a toddler has been identified as at risk of having autism, the real work begins. Families need support and services to help affected children adapt their Spartan world to ours; and communities must invest in those services in order to make an early diagnosis realize its true worth.
Our family, and the millions of others touched by autism, can testify that the investment is money well-spent. Every day, employers and educators are unlocking the extraordinary talents of individuals with autism, who in turn give to us a fresh outlook on what really matters.