Issue No. 50, January 2014


You might be an autism parent if you encourage your child by telling him anything is possible and he replies, “Count your hair.”

~ Ellen Notbohm


And you can quote me on that . . .

Long before the sound bite, the Facebook poster and the Twitter tweet, humans loved quotations. You can even find quotations on quotations going back hundreds of years. Ralph Waldo Emerson established that “By necessity, by proclivity, and by delight, we all quote.” Mark Twain was a century ahead of our 21st-century proclivity to quote out of context: “Nearly any invented quotation, played with confidence, stands a good chance to deceive.” And Jorge Luis Borges summed it up elegantly with “Life itself is a quotation.”

I don’t fancy myself any more quotable than the next person, but I do have the privilege of interacting with readers across numerous mediums, many of whom like to quote me. Through likes and shares and retweets, you let me know what most resonates with you. Here’s a sampling from the year just ended:

 

Bringing up sons with autism and ADHD isn’t a “battle.”
It’s a privilege,
and they are doing a neat job of raising me.

* * *

Bryce turned 21 today and I'm proud to be able to say we gave him exactly what he wanted -- nothing. His dearest wish was for a day with no gifts, no surprises, no hoopla, no drinking. Earlier this week he gently reminded me that the lavish cakes I baked for his parties as a child were for me, not him--he's never cared about cake. We laughed. I can't begin to tell you how much admire him. He is probably the humblest person I know, and in that humbleness, he is also one of the mightiest.

* * *

“Autism Isn’t for Wimps.” Seen this around the web a few times now, and am wondering, what’s the message? Autism isn't a choice. You can't opt out of it by deciding to be a wimp. Would-be supporters can, though. What is a wimp, anyway? Persons with autism and their families who are without knowledge and support may be unable to act effectively, but they are the very people who need our empathy and assistance, not derogatory name-calling. I'm a wimp about a lot of things. It takes a certain amount to strength to face that in ourselves, and begin to turn the tide.

* * *

“Please beware generalizations.
Not all kids with autism like dogs, music, math,
and they don't need one more reason
to feel like they're 'weird.'"

The above tweet received this reply:
"Thx for saying this.
I have Asperger's and am terrible at math,
do not like computers, etc.
I'm tired of the stereotypes."

* * *

Pet peeve: professionals who write reports referring to a child as "that" rather than "who," e.g. Emily is a six-year-old girl that has little expressive language, or, Michael is a quiet boy that exhibits sensitivity to sound. I may be old school, but to me, "who" is a person while "that" is an object. So often it's the subtleties of language that shape perceptions and reactions, and it makes me wonder if some so-called experts unknowingly slip into thinking of children as subjects more than persons. Dr. Seuss was aware of this; he didn't title his book Horton Hears a That.

***

Life-with-autism holiday tip: Never forget that autism has given your child the gifts of rote memory, imitative speech and literal interpretation. Refrain from wondering aloud in the car on the way to the party if your brother-in-law is going to over-imbibe as usual, unless you want to hear your kiddo check in later with “I want to sit with Uncle Joe so I can see if he really does drink like a fish!”

***

I wash my sheets and put them right back on the bed. The reason for this is that despite decades of trying, I simply can't fold a fitted sheet and got tired of feeling incompetent. If you can accomplish this feat, I'm genuinely happy for ya. But it always makes me think of our kids and how they must feel when others lose patience with them for not being able to "figure out" "simple" tasks. Like they've never, ever never gotten tangled up in a roll of plastic wrap.

***

“Perfect” no more exists and is no more worth striving for than “normal.”

***

We are so capricious in our use of language, no wonder our kids are confused. We revere "experts" because they supposedly know a lot, but we use "know-it-all" as a pejorative. If a child with autism has voluminous knowledge about a single subject, why is that an "obsessive interest" rather than "expertise?"

***

Another thing that broils me is adults who think a child with autism doesn’t need speech therapy because “he talks, doesn’t he?” Speech therapy isn’t just about forming words or correcting a stutter or lisp. It’s about learning to use language flexibly, distinguishing the abstract from the concrete use of it, being able to sort and hold information in your head, apply it to a new situations and settings, retrieve it upon demand, draw connections between ideas and facts. It’s about reading the inference and intent in other people’s language and being aware of how our language might be perceived by others. Every single academic activity has a language component. I feel comfortable arguing that all kids with autism need speech therapy, and I don’t make blanket statements like that lightly.

***

You might be an autism parent
if, when asked yet again,
“What’s your child’s special gift?”
you wearily reply,
“Eating toilet paper.”

***

UConn study suggests some children may (lose the diagnosis) (grow out of) (overcome) (insert your own phrase) their autism as they age. First, can we STOP falling all over studies with whopping sample sizes of 34 children (any geographic or socio-economic diversity in the sample?). But more importantly, if years of diligent therapy, education and lifestyle choices yield results that allow children with autism to function more successfully, does that mean they no longer have autism, or does it mean that dozens of devote people have put immeasurable effort into managing a multifaceted condition that as yet has no biological markers? I deplore my own cynicism, but I smell politics and the insurance industry in here.

***

You might be an autism parent
if you encourage your child by telling him
anything is possible and he replies,
“Lick your elbow.”

***

Autism Awareness Month is only a few hours old but the ridiculosity has already arrived in waves. I can see what I'll be doing this month--debunking the untrue, the inane, the befuddling. Yes, many parents of children with autism stay married, but when they don't, YES, there ARE single dads raising kids with autism. Yes, you CAN raise a child with autism without taking Valium. No, you will not have "The Talk" with your child, because it will take many Talks about The Subject for it to make sense. Stay tuned . . .

***

Baffles me how some schools can't see the difference between having an "isolation room" where students are sent "when they throw tantrums," and a "quiet room" or "green room" where they can go for preventive self-regulation or dignified calming/regrouping. Here's how to tell the diff: parents will object to the former, and welcome the latter.

***

Whenever I see someone quoted as saying a child with autism "can be hard to love," I want to say, do you s'pose he feels the same way about you?

 

 

© 2014 Ellen Notbohm www.ellennotbohm.com

 


French translation of Ten Things now available!

Long-awaited French translation of Ten Things Every Child with Autism Wishes You Knew has arrived! “Pétillant d’intelligence, d’empathie, d’humour et d’amour…” = “Sparkling with intelligence, empathy, humor and love…exciting, often moving, resolutely optimistic.” Many thanks to my colleagues at De Boeck Publishing.


This month’s reads

Autism Asperger’s Digest

“Holding Up the Mirror of Accountability”

Sometimes I have to answer a question with a question. When an adult asks how accountable we should hold children with autism for their behavior, I ask how accountable we hold ourselves.

Children’s Voice

“I Choose to Be Optimistic”

Bryce’s popular essay is worth another read, another reminder that “having faith in yourself and others is important. No matter what faith might look like to you, what matters is that you're able to see how it makes you look inside yourself--what makes you, you.”

Your questions answered on my blog

  • Hey, autism hucksters! Here’s how to ensure that I never buy your product
  • Why I don’t engage in the “cure autism” debate
  • Sometimes it’s this simple: time to move on
  • Autism: one word, many truths. What’s yours?
  • Are we heaping too much on our daughter?
  • Don’t buy “knowledge gathering” as definition of “smart” kid
  • “He gives up so easily”

Downloadable PDF summaries of Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew now available on my website.


Did you miss my last newsletter? If your friends have no curiosity about what makes your child with autism tick, and have no inclination to make even small accommodations to include him, it may be time to get yourself some new friends. Why life is better With a Little Help from Your (New) Friends


Writing a book? Contact me about affordable rates for developmental editing and writer coaching at emailme@ellennotbohm.com


Excerpts from all my books are on my website, including full chapters from Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew. www.ellennotbohm.com


©2014 Ellen Notbohm | Third Variation Strategies