hope
Forgotten stories of autism
The Atlantic has a fantastic story about Donald Triplett, the first person to be diagnosed with autism. The authors, John Donvan, perhaps more famously known as an ABC Nightline correspondent and Caren Zucker, a television producer and mother of a teen with autism, got the story as part of a collection they are working on for a new book.
The story shows us how Donald became to be diagnosed, what his early life was like, how he enjoys his twilight years — golfing, as any well-heeled gentleman might spend his retirement — and how he’s living as an accepted member of his hometown, Forest, Miss.
The authors sought out an expert in adults with autism to flesh out their story — kind of a rare breed. One thing that Peter Gerhardt, developer of an adolescence-to-adulthood program at the McCarton School, said, resonated with me:
“People want to treat these adults [with autism] like little kids in big bodies. They can’t. They’re adults.”
Here, here.
“It’s having friends It’s having interesting work. It’s having something you want. It’s all the things the rest of us value, once given an opportunity.”
Imposter syndrome
I have a friend who is wildly successful at what she does, but suffers from imposter syndrome. She’s worried someday that she’ll be found out, that everyone will see her as she sees herself: an imposter.
I frequently worry about that as a parent. Somehow, I’m certain that the world will look beyond my kid with special needs, and the fact that he’s walking and talking and working and happy — which I attribute far more to God’s loving hand than my bumbling efforts — and see me and my other children and know the truth. I am a lousy mother.
Yet, once in a while, I get a small affirmation about the decisions I make as the mother of my other two children. In today’s mail, someone in my other son’s life took a moment to say thanks and add the observation that makes every mother’s heart sing … “I respect and admire your ability to let him take the lead with his own destiny — not an easy thing to do, mom, and not something I see every day.”
There you go, Michael. I’m not the best, as moms go, but it’s sure better than a stick in the eye.
Overheard in the Wolfe House #19
Sam: I think fall is here.
Peggy: Yes, I believe it is.
Sam: I turned the air conditioners off. You can sleep with the windows open now. Peace and quiet.
Overheard in the Wolfe House #18
Two inches of rain. The toad and frog songs have returned.
Music, sweet music.
Head of Ranch Security
Gus patrols for varmints so Sam and I don’t have to.
Return of the Pawnee
Thanks to Texas A&M’s little video, “Texas Inlay & Four-Flap Grafting,” the girl can graft.
Bloom falling off the yellow rose …
Texas faces an $18 billion deficit, and it is likely that some painful cuts will fall on the state’s most vulnerable — as if this state’s services for the aged and those with disabilities and special health care needs weren’t already starved for resources.
Here’s what could be lost, simply assuming the across-the-board 10 percent cut ordered by Gov. Perry:
Community Mental Health Services = $80 million
State Mental Health Hospital Services = $44 million
Children with Special Health Care Needs = $24 million
EMS Trauma = $23 million
Mental Health Crisis/Transitional Services = $10 million
Primary Care = $9 million
Immunizations = $8 million
Some of the beautiful people in Austin who remind the legislators to have a heart, and be smart, with our money, have organized a rally on the north steps of the capitol for 1 p.m. Sept. 1. For more information, call Dennis Borel or Chase Bearden at 512-478-3366 or e-mail: stoptexascuts@gmail.com.
Lend your experience
Some of the best help a parent can get is from another, more experienced parent.
If you are like me, one of those more experienced parents, you might think you don’t have time to help. But you do.
There is some training involved, but it’s fun and chances are, you’ll learn a thing or two that helps your family. And then you pay it forward by providing support to another family — usually on the phone, or through e-mail.
If you’re ready to help, mark your calendar for Sept. 25, because that’s the next time Texas Parent to Parent will be in Dallas for parent volunteer training.
Here’s a little from their press release:
“We believe that support from other parents is the best way to assist a family on the journey of raising a child with special health care needs. The sharing of joy, frustration, and hope with another parent is one of the most powerful experiences a parent can receive. We’re looking for a few parents who are ready to share their time and their experience.
Do you know a family who would like to attend? Who are the parents who have made a difference in your life? Who has helped you along on your family’s journey?”
Call 1-866-896-6001 … and pass this on.
Nature and Nurture
We’ve come a long way since Bernard Rimland shredded BrunoBettleheim’s theories that refrigerator moms caused the autism in their children. Or not far at all, depending on your point of view.
In this summer’s Columbia magazine, I read about a promising study in Norway that is tracking 110,000 people over their entire lives. A mother-and-child cohort will gather data that could be used to test dozens of theories for autism’s causes. In addition to chronicling every illness, immunization and medical treatment, they will be tracking gastrointestinal problems, too.
The world will likely get another pass at testing the persistent thought that autism is linked to vaccinations, although more than a decade of study has yet to link the two conclusively. In my opinion, very little work has been done to examine the stomach problems our kids have.
I’m not certain Sam’s gut problems, even though they began at about 18 months old, came first and the autism came second. He had autism problems from the start. But it’s about time some serious research got done in this area. With the last doctor I mentioned this concern about his gut I got — as usual — a blank stare.
Do you want to be my friend?
Those who’ve read See Sam Run may remember the passage that alludes to Eric Carle’s book, “Do You Want to Be My Friend?” Classic children’s books were a big part of fostering Sam’s language development as a preschooler. That little mouse was persistent, and Sam liked the repetitive language.