I notice… you don’t have autism

Gone are the days parents brought in sugar-laden, empty-calorie, cavity-inducing, full-on-carb treats to their child’s school for a birthday. However, even without all the sugary treats, this boy’s birthday was still pretty sweet.

My son, Ethan, loathes most dessert delicacies anyway, (DNA tests to prove he’s actually my biological son are pending) so the book is a nice change of pace.

A special present

Ethan’s birthday was Friday, Sept. 6, so Michael and I were invited to the classroom. Katelyn Kawejsza (pronounced: kah-way-zah) and Alissa Faucher (pronounced: foe-shay), Ethan’s new teacher and paraprofessional respectively, warmly greeted us when we arrived, as did Ethan. In anticipation of the day, Ethan previously told Michael and I that the book read would go as follows — “Daddy reads one page. Mommy reads one page. I [Ethan] read one page.”

Before we read the story, Ms. Kawejsza had the children (and us) sit in a circle as they do every day for “morning meeting.” When seated and quiet, Ms. Kawejsza brought out a small box with a bow, symbolic of a birthday present. She explained that the gift would pass from one child to the next, at which time the class would greet the child with the gift by his/her first name. In turn, the child with the gift then compliments the birthday child with a phrase that begins with “I notice you…” — and the compliment must focus on the child’s actions and behaviors, not his/her physical characteristics.

I notice you…

The first child barely finished the word “you” before tears welled in my eyes. These are some of the compliments Ethan’s classmates said about my son:

“I notice you…”

• say hello to people when you see them in the hallway
• are always quiet and listen when we have circle time
• are always kind to people
• are always happy
• always have a smile on your face
• help your friends on the playground
• have the hottest mom, not only in this class, but in the entire school, and probably the entire town (OK, no one said that. But I’m sure it’s only because the kids aren’t allowed to comment on physical characteristics. That’s the story I’m sticking with.)

At this point, Miss Faucher gave me several tissues to wipe my eyes — and blow my nose in a most unladylike fashion (a Ziering family tradition) — and the compliment circle was only halfway complete. Any mother (parent) would swell with pride to know that her child makes such a positive, lasting impact on classmates. But, only the parent(s) of a special needs child can truly understand the daily mental, physical, financial and emotional effort it takes — by both parent and child — to undergo never-ending therapies, IEPs, PPTs and extracurricular activities, for a child to be accepted in the mainstream.

As noted author, speaker, cited expert and autism advocate Temple Grandin perfectly stated, “I am different, not less.” Ethan’s generation — a generation who bears witness to 1 in 50 peers diagnosed on the autism spectrum — understands he is different, but not less. What Ethan’s classmates don’t notice is how hard he (and other special needs children) works to assimilate into a typical classroom and typical society.

What they don’t notice

• They don’t notice the countless hours Ethan spends in private therapies to become “just another kid” in the morning meeting circle.
• They don’t notice that 15 minutes after an almost seven-hour school day (when most 7- and 8-year olds need a nap), Ethan is already at his first 45-minute private therapy session.
• They don’t notice the hours Ethan has spent in speech therapy to get beyond four-word sentences, or to answer their “wh” questions, carry on a back and forth conversation or talk about things out of his comfort zone.
• They don’t notice how many hours Ethan has spent at occupational therapy to look them directly in the eye, to bounce a basketball so he can play at recess, take turns so others won’t get frustrated , write their Valentine’s Day cards or tie his shoes.
• They don’t notice that Ethan has logged more hours in a swimming pool than Michael Phelps to increase muscle control, extend his range of motion and gain endurance.
• They don’t notice how his physical therapist takes him on the playground to teach him how to propel himself on the swings, walk up the stairs one foot at a time or lift weights for upper body strength.
• They don’t notice that when they have play dates, Ethan will be at craniosacral therapy — a two hour round-trip excursion — an alternative therapy which helps regulate the flow of cerebrospinal fluid by using therapeutic touch to manipulate the synarthrodial joints of the cranium (Google it.).
• They don’t notice his time spent with a music therapist who, through music, teaches him how to better socialize and communicate with others.
• They don’t notice three-hour School of Rock band rehearsals, which take place after his 45-minute occupational therapy session, which takes place after his seven-hour school day, so he can assimilate with others through his musical gifts.
• They don’t notice how many social stories Ethan reads to lessen the anxiety of new situations, or to explain what’s expected of him in different environments.
• They don’t notice that he (sometimes) wears compression shirts on the hottest of days, because the light pressure calms his sensory system and gives him a sense of self/place.
• They don’t notice that Ethan must always give an exhaustive 110 percent effort to become a part of their world, which by autism’s definition, is a world he finds innately uncomfortable.

But I notice these things. I notice them because I am his mother. Most of all, I notice that my son — through his hard work, empathy, intelligence, smile and music — will one day change the world for the better. And, I notice that he already has.

Image credit: Allison Ziering Walmark

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