When Medication Is the Right Choice

Jennifer Byde Myers www.jennyalice.com Jack is asleep in my bed right now. He wandered in while I was folding clothes; I pulled back the covers and asked if he wanted to snuggle. He’s non-verbal, but he made a happy sound I know to be yes, and from across the room he leapt in, buried his head under the pillows, and fell back asleep as I returned to my unmatched socks. It’s hard to believe that he’s the same boy who as a three-year-old didn’t sleep for 52 days. Fifty-Two days where he didn’t rest longer than twenty-thirty minutes in a row and no more than one to two hours in a 24-hour period. Back then he would scream and thrash the entire time between passing out. It’s an example — the worst one — of what we call “episodes,” what appeared to be pain from unknown source, and it happened…

2010 In Review: Thanks to All Contributors

Liz Ditz http://lizditz.typepad.com/i_speak_of_dreams/ http://lizditz.typepad.com/academic_remediation/ On behalf of my fellow editors, Emily Willingham, Jennifer Byde Myers, and Shannon des Roches Rosa, I’d like to thank all of the 2010 contributors to The Thinking Person’s Guide to Autism. What follows is an alphabetical list of contributors, with links to their TPGA posts, their website(s) and twitter accounts (where available — some of our contributors have neither websites nor twitter accounts). Eighty contributors. 120+ posts. Many, many different perspectives on autism. Autism through the lifetime. Thank you all. Kate Ahern, Living the Least Dangerous Assumption. Blog: http://teachinglearnerswithmultipleneeds.blogspot.com/. Twitter: http://twitter.com/#!/teechkidz . Presentations: http://www.slideshare.net/teechkidz Kyra Anderson, Bring Everyone Out. Blog: http://kyraanderson.wordpress.com/ Anonymous Special Needs Professional, Why I Can’t Breathe Tonight Emma Apple, If the Scarf Fits Blog: http://www.bluehijabday.com/ Twitter: http://twitter.com/#!/bluehijabday Devon Koren Asdell, How I Know Vaccines Didn’t Cause My Daughter’s Autism Blog: http://community.advanceweb.com/blogs/ot_9/ . Website: http://dkoren.freeshell.org/. Stacey Ashlund, Comparative Misery and a Born-Again Buddhist…

And Thoughts are Turning Back to School

Liz Ditz http://lizditz.typepad.com/i_speak_of_dreams/ http://lizditz.typepad.com/academic_remediation/ I know we said a break, but… Today, Gary Brannigan PhD and Howard Margolis PhD (the authors of a great book, Reading Disabilities: Beating the Odds) published a blog post Stonewalling the IEP. While Brannigan and Margolis are writing about specifically reading issues, their advice can be generalized to all kinds of issues. The blog post is particularly about “Present Levels of Performance” and how many IEP teams skimp this section. Brannigan and Margolis suggest there are four reasons: The school members of the IEP Team don’t know how to develop a Present Levels section that’s complete, meaningful, and functional. The district’s evaluations failed to supplement norm-referenced data from standardized tests with instructionally-relevant functional information. School members of your child’s IEP Team have overwhelming caseloads. (Rarely): To wear parents out and send a message to other parents: “Be satisfied with what we give you.” Brannigan and…

Creating a Special Education PTA

Jennifer Byde Myers and Shannon Des Roches Rosa www.SEPTAR.org Community is critical for parents of children with special needs. Community gives us emotional support and provides information about our kids’ therapeutic, medical, and educational choices. Our communities have the experience and knowledge to weigh in on our decisions; its members empathize and help us keep going when times are hard, and they rejoice with us in our children’s accomplishments. It’s not always easy to connect with parents like us. These kids we love so much are vulnerable, they need us – and the demands of our extra-intense parenting can leave us feeling drained and isolated. But if you can muster a burst of energy and round up a few like-minded individuals, then you can create your own community: by forming a Special Education Parent Teacher Association, or SEPTA. That is what we did when we helped found SEPTAR, the Special…

Buying Hope

Jennifer Byde Myers www.jennyalice.com Lotions, potions. A special chair for eating, a special chair for learning at home. Shoe inserts, leg braces, seat cushions with no grip, a lot of grip, seat cushions with little bumps, seat cushions with little bumps and gel inside, and a backrest. Fancy forks with bendable handles, child-sized forks, spoons with holes in the bowl, bowls with grips on the bottom, bowls with the side cut out, and special chopsticks, and sippy cup after sippy cup with any number of parts and combinations to mess up. Small piano keyboards, and larger piano keyboards, and a keyboard you can walk on, just like in the movie Big. A touch screen monitor, an adapted computer, an adapted tricycle, an expensive German tricycle. Jackets that zip with a nice big tab, pants with an elastic waist that are easy to take off, overalls which are difficult to take…

Meeting Maddy

Jennifer Byde Myers www.jennyalice.com www.canisitwithyou.org www.haveautismwilltravel.com It was almost dark when we pulled in to the campground in Ohio. I went to the door of the manager’s office, and the sign said, “Will return 9:00.”  I am an eternal optimist (HA!) and hoped that it meant in eleven minutes at 9pm instead of 12 hours later. We had a reservation, called in hours before, but there were no instructions left for us taped to the door. Most RV parks and campgrounds will do this, so you can still find your way in the dark. As I stood there on the porch, looking back at the RV, knowing that my children were probably yelling at my tired husband because they so desperately want to get OUT of the RV when we stop, I thought I might die of exhaustion. I wilted a little in the heat, and began to survey the campground…

Quality Time

TPGA is taking a wee break as all but one of our editorial staff is traveling — with our children with autism — and that is a rather time-consuming and internet-unpredictable undertaking. We’ll resume posting essays on Wednesday, August 25th. We’re very grateful for the fat pile of submissions both published on the site and upcoming, and encourage you to submit more, share more, build community more. The discussions in the comments  have been fantastic! Our thanks to everyone who has helped our community thrive. While we’re away, you can check out what our editors have been up to: Liz has been doing helpful TPGA round ups: Thinking Person’s Guide to Autism: Authors June 6 to August 2: What A Lineup! Thinking Person’s Guide to Autism: June 6 to August 2: Posts By People With Autism Thinking Person’s Guide to Autism: June 6 to August 2: Autism from Diagnosis to…

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Kodachrome

Jennifer Byde Myers www.jennyalice.com Can you remember developing photos, when you had no idea what you were going to get? We would turn in those little canisters and hope for something wonderful to come back in the envelope.  We used to spend a lot of money trying to get a good picture of our son. Capturing Jack on film required expert photography skills combined with the fastest shutter speed and endless rolls of film. It took money and patience and perseverance, and faith, and will, and cooperation and an ability to be spry that most people lose about the age of nine — and we failed, continuously. We don’t really have those “Kodak moments” in our family, and it’s not for lack of trying. We have been prolific in our clicking so as to produce at least some decent shots over the years, if only by the grace of statistics…