WVTF Virginia Public Radio featured the SAFE program:
At the Virginia Tech Center for Autism Research, we are launching a community initiative called SAFE Supporting Autism Friendly Entertainment. In September we partnered with The Lyric Theatre in Blacksburg to host an autism friendly screening of Guardians of the Galaxy. In October, we will have an autism friendly bowling even at NRV Superbowl. For Halloween we are partnering with Blacksburg Baptist for a trunk or treat event, a safe and autism friendly alternative to traditional trick or treating. Please send me other ideas for SAFE events in our community!
WVTF Virginia Public Radio featured the SAFE program:
First doctor’s visit. First haircut. First wave. First “Momma.” Autism is measured by these missed developmental milestones, and I have long since misplaced those typically developing checklists and corresponding stickers for my son’s baby book. His first doctor’s visit was for colic and every appointment that followed had its own nightmarish retelling. His first haircut had a similar story: fearful screams as if the barber would slice off a leg rather than a soft shaft of hair. We had no diagnosis, only a sinking feeling that something was wrong. He was a year old. He wanted no part of his birthday party or the birthday cake or the presents or the noise or the company. He got a “first birthday” sticker in his book, but not the stickers that would follow: first wave hello, say bye-bye. He did not say “momma” or “dada” or “milk” or “water” or “bed” or “hi” or “I love you.” We were left with an empty book and too many sticky reminders of those unreached milestones.
This was the autism life as we knew it — managing the daily challenges, triumphs, the revolving door of speech and occupational therapists in and out of our home, the unimaginable patience we drummed up each day, the enthusiasm for small requests, the attempts at eye contact and sounds that resembled words. Autism didn’t just isolate my son from the world; it isolated and insulated all of our worlds. There were no family vacations and too often our best laid plans were force abandoned by meltdowns or overwhelming anxiety.
That’s until I met you: the teacher in his first self-contained special-education classroom. My son was my first exposure to autism, but you were experienced with students on the spectrum. As I tried to explain the nuances of his anxieties, you reassured me and said: I will keep him safe. I cried knowing he would be afraid and confused, and you replied: He will have fun and learn how to be more independent. And each time, you were right. That’s until you kicked him out. You argued that the self-contained classroom was no longer his least restrictive environment, so you helped me find a hybrid, inclusive (reverse mainstream) preschool classroom where he would have typically-developing peers who could help with his speech and social interactions.
So then I met you: the dual-endorsed elementary and special-education teacher who invited my son to the classroom on a quiet evening after a long day of teaching other students. You sat on the floor with him while he looked at trucks and trains. You didn’t ask him any questions. You just sat quietly while he explored, and you joined him. He grabbed a car so you grabbed a car. He put down a block. You put one on top. Then you pulled out a basket and started cleaning up, and he followed in unison without either of you saying a word. Weeks later, you asked your bus driver friend to park outside your classroom during the middle of the school day. I told you he was scared of the big bus, despite his love for anything with wheels. You said: Let me try and led all the students outside, rolled pennies onto the floor, and created a scavenger hunt. All of a sudden, my son was climbing onto a bus looking for pennies — just like the rest of his new friends. You emailed me nearly every day of the entire school year to tell me about his meltdowns, his accomplishments, his response to the fire drill, the student assembly, and you brainstormed with me how we might get him potty trained before kindergarten. You graduated him with honors.
Now onto the big school with the big bus and the big kids. And there you were again: the teacher. This time an inclusive, general-education kindergarten teacher with a huge smile and a high voice and bright running shoes. You taught him to love school, to read, to make friends. You coached him into taking turns on the tricycle. You made him star of the week and came to his first ever friend birthday party because he invited you. You hugged him every day (and still do when he sees you in the hall).
Now we get to track educational milestones — and they’re sticky, too, with glue and finger paint and your silly smiley faces at the top of his first grade work. My son has a favorite author, greets his bus driver every morning, has play dates with his neighborhood friend, enjoys school and told me twice today that he loves me — and it’s largely because of you, teacher. Doctors visits are still challenging, meltdowns happen, haircuts are out of the question, but now I have someone from the “outside” who understands, who will brainstorm interventions and offer objective advice. You have asked me to trust you and, in return, you love my son. You keep him safe, teach him independence, and instill a love for learning. You honor his way of being in the world. You are a part of our autism life and make us all feel less isolated. Never underestimate your role or question whether or not you make a difference. Trust me: You do.
WNRN Wake-Up Call: Children With Disabilities and Special Needs On the March 4 Wake-Up Call about special education, host Rick Moore talks with Sarah Blech, Coordinator of the Albemarle Schools Parent Resource Center; Dr. Carla Manno of Accord Consulting, a special education advocacy group; Stephanie Morris, mother of two children with special needs; and Amy Azano of the Albemarle County Special Education Advisory Committee and a researcher at UVA’s Curry School. Among the many issues they discussed, the group also wants to make Charlottesville aware of the upcoming Sprout Film Festival, features films made by and about people with developmental disabilities, coming to the MLK Center on March 13.
My son has autism, but my daughter most definitely does not. Where my son has limited speech, my daughter talks nonstop. Where my son is fearful of change, my daughter invites adventure. Where he is nervous around strangers, she has never met one. She is not better or preferred. She is not normal where he is not. Rather, she prides herself on being “weird” (a badge of honor in our family!). And she is abnormal—having an abnormal amount of empathy for her brother’s exceptionality. An abnormal amount of patience for his behaviors. An abnormal amount of acceptance for his push/pull relationship—playing with her on his terms only, choosing when to be affectionate, which nights to hug her and say I Love You and which to say Go Away. Regardless of his bedtime choices, she greets him the same every morning: with love, kindness, acceptance, respect. If he cries, she runs to find out what is wrong. She pats his head, kisses his boo boos, and plays with him whenever he asks, and then gives him space when he doesn’t.
She is 7—kinder, wiser, and more compassionate than most. She is the person I aspire to be.
Since William was a baby (and possibly before), she has asked to visit Disney World. We said maybe when you’re 7. He’ll be 3…it’ll be perfect. You’ll both be at great ages for all the parks. But, by the time he was 3, we knew that Disney World would not be a magical place for him. And for his sister—well, the Disney princesses came and went. We found and lost Nemo. And, as the months of her 7th year passed, we realized she had stopped asking. For Disney.. or anywhere that resembled a “traditional” family vacation. And all this without pity. That’s why it was especially sweet when I told her that I was taking her for 5 days on a girls trip to Disney! We did it just before Thanksgiving, and there was magic. It was special and fun and carefree…and painful. She commented frequently on what might frighten her brother, what he might like, things he would find funny, things that would be too difficult, and so on. He was never out of mind for her… or for me.
On our last day, I saw a mother with her teenage son. She looked tired, and he looked reluctant. He was wearing earphones. Not the ear buds a teen boy might wear to listen to JayZ but thick, full-sized earphones. We were waiting in line for Goofy’s Barnstormer. I asked, Do they help? giving a nod toward her son and attempting a smile that might suggest I get it. She smiled a Mom’s knowing smile and said I think so. It helps with the noise. We stormed the barn in tandem, and my daughter and I endured her son’s screaming I wanna go home. I wanna go home. I wanna go home over and over until it ended. We stopped for some Toontown ice cream, and my daughter, fighting her own tears, said That boy reminded me of William. We shared a healthy cry into our fudge Sundays and agreed that we wanted to go home, too. She added, Mommy, Disney World isn’t ready for autism. It’s not but maybe someday he’ll be ready for it.
One night (in total desperation), I begged - literally begged - God to make my son "normal." He wouldn't sleep. Eat. Laugh. What he did was cry. He was fearful of his world. He spent his entire day unable to communicate, unwilling to eat, irritated, afraid (I think), and crying - and then, finally, as night fell...he was restless. His anxiety did not set with the sun. Rather, it intensified. Alone and in the dark (or with a host of attempts at nightlights, weighted blankets, canopies, noise makers, and air purifiers), he cried. When I came for him, he scrambled into even darker corners - unwilling to be consoled. There were no Rockwellian portraits on those nights. I did not cradle bad dreams and boo boos, it seemed as if I was making them worse. After countless nights (a blur of weeks, months, holidays, a year), he found some peace in my bed. I couldn't touch him, but I couldn't leave him. The desktop computer, in a corner of the room, played a continuous loop of Thomas the Tank Engine so that I could at least rest for a short while and, occasionally, I would find him asleep.
On one of those nights (and it doesn't matter which), I didn't pray--I begged. I made bargains and offered ransoms and debts I could never repay but with my life. And I would have gladly given it. I was there--sleep deprived and so utterly overwhelmed at the prospect of a life without sleep...without laughter and normalcy...that I would have given my last breath to see this prayer come true: make him normal. Give him a life. Let him sleep. Allow him to eat a piece of pizza. Grant him laughter. Joy. Friendships. Words.
And, selfishly, I begged for my own rest.
My son was diagnosed with autism before his 2nd birthday, but our story begins long before then. By the time of diagnosis (where most of "our stories" begin), we parents have long known there was something "wrong." We knew that it was unusual that our sons and daughters wouldn't sleep through the night.. wouldn't nurse.. wouldn't smile.. wouldn't look at us.. wouldn't cuddle.. wouldn't stop spinning those plates.. wouldn't stop staring into nothing.. and wouldn't stop not talking. We knew it. We knew it like old people say the rain hurts their arthritis days before the storm rolls into town. That was us- at the prominent children's hospital- feeling sucker punched when we finally heard the diagnosis. It was not real. Rather- a scene from a movie. Slow motion. Your. son. has. au. aut. autism. We were stuck there- in the stillness of a reel of film. Unmoving as we digested the rest of what our developmental pediatrician told us- buy this book, buy that book, read this pamphlet (ha- a pamphlet on autism... really?). The doctor gave us a prescription and said, "Good luck." We never filled the prescription, but we did read the books. And, still, we are searching for answers.