In just two months -- thanks to the love, support and generosity of friends and family (i.e., you!) -- THE E-TEAM has raise $80,467.33 for Autism Speaks! If you think this big-mouth, sequin-wearing, Botox-loving, snark-speaking,White Castle-eating, self-diagnosed body dysmorphic disorder, bleached-blonde-to-within-an-inch-of-her-life born and raised Jersey girl -- now residing in the burbs CT -- will stop before reaching THE E-TEAMs $100,000 goal... you are crazier than a vegetarian at a Pork-a-Palooza Festival. If you havent yet donated, please consider doing so! (Or, one person can donate $19,532.67, and then Ill STFU. Until next year.) Below is some guilt-inducing writing to perhaps help open your wallet... WHY WE WALK: Ethan’s celebrated his 8th birthday on September 6, 2013, and Michael and I were invited to the classroom. Ethan’s teacher and paraprofessional 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, Ethan’s teacher had the children (and us) sit in a circle as they do every day for “morning meeting.” When seated and quiet, the teacher 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 our eyes. These are some of the compliments Ethan’s classmates said about our 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 (no one actually said that. Just making sure you’re paying attention) Any parent(s) would swell with pride to know that their his/her 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 68 children/1 in 42 boys 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 dont 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 we notice these things. We notice them because we are his parents. Most of all, we notice that our son — through his hard work, empathy, intelligence, smile and music — will one day change the world for the better. And, we notice that he already has. Please help us continue to change the world with a donation to the Walmark Family E-TEAM! Love always, Michael, Allison, Ethan and Eliza walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1088369&lis=0&kntae1088369=2EC79FD0C648432E80FB4F75D6C01394&supId=386959273&teamName=The%2BE%252DTEAM
Posted on: Tue, 10 Jun 2014 12:42:41 +0000
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