The Autism Whisperer

If you have a Facebook account, you probably see memories of posts from prior years pop up in your notifications every so often. My favorites are the ones from when my boys were little – it’s always fun to look at the adorable pictures and relive those experiences.

Occasionally, however, I’m notified of a memory that reminds me of a more difficult or sad experience. And every year, on the last week in January when this particular memory appears, I remember Barbara.

To describe the impact Ryan’s preschool teacher had on him and on all of us, I’ll take you back to 2007. Ryan was three and we had just received the autism diagnosis. It was a very overwhelming time. In addition to trying to comprehend what that diagnosis meant for him then and in the future, we were looking for a new early childhood education option. Ryan’s current preschool was not the right fit, as it lacked the support he needed to thrive. He had difficulty following directions, his speech was limited, and he had a number of sensory needs.

Ryan participated in a weekly social skills group. I had become friendly with one of the other moms, who suggested I check out the Sinai program at a local Jewish preschool – a classroom designed for children with special needs, primarily developmental and/or cognitive. Her daughter recently started school there and she said it was a wonderful program.

I called the school immediately and they had one spot left for September. Barbara, the Sinai teacher, suggested I bring Ryan in to visit. I was impressed with what I saw. There were only seven or eight students in the classroom, with Barbara and an assistant teacher, which was the perfect ratio. They both appeared patient and kind and were constantly engaging the children. Barbara said that in addition to the Sinai program in the morning, three afternoons a week, she would take the children who stayed a full day to the regular education classroom to help them be included in that environment.

On the first day of school, Ryan was clinging to my legs, screaming and crying how he did not want me to leave him there. He had been at the other preschool for two years and all transitions were difficult for him back then. Barbara, calm and reassuring, pried him off me and got him focused on a farm toy.  I knew he had found the right environment when after a few weeks, Ryan had progressed from screaming to mild tears to “Bye, bye, Mommy,” and running into the classroom without a backwards glance.

Because of the Sinai program, Ryan’s vocabulary grew, along with his knowledge of Judaism. Every two months, Ryan was Shabbat star, which meant I would go and join the class for a few hours in the morning in songs, prayers and food. Ryan always sat on Barbara’s lap, sucking his thumb, thoroughly content. Barbara shared an update on Ryan’s day with us daily and was always available on email to answer questions, give advice, or brainstorm ideas. She was never phased by meltdowns, screaming children, or any sort of chaos. Instead, she was often able to calm the affected child quickly. My friend called her the Autism Whisperer. Thanks to Barbara, there was finally a place for our children – where they would not only feel safe and taken care of – but where they could thrive.

Despite the progress, the uphill climb Ryan and we faced seemed overwhelming. I mentioned this to Barbara on several occasions. Once was after someone had shared a story about a child with special needs becoming a Bar Mitzvah. I said, “It’s so hard to picture Ryan in an elementary school classroom, let alone having the skills to study for and lead a Bar Mitzvah service.”

“Oh he will,” she said confidently. “You’re overwhelmed with where he is currently, and that’s understandable. But there is so much inside of him you can’t even imagine him doing right now. One day you’ll look back on this and marvel at how far he’s come.”

She never doubted her children could do anything.  She saw past the disability and unconditionally loved them all.

When Ryan graduated from preschool, I was so sad to say goodbye to her. “I can’t picture anyone but you teaching him. Any chance you can transfer to his elementary school?” I joked.

“Please stay in touch and let me know how he’s doing. And I’m always here if you need me,” she said.

I did. We exchanged emails regularly where I shared updates.

The good:

  • “Guess what, Barbara, Ryan can read!”
  • “Barbara, Ryan learned to write his name!”
  • “Ryan’s learned some prayers in Hebrew school. He’s picking them up quickly.”
  • “Ryan can read Hebrew letters now!”

And the setbacks:

  • “Barbara, Ryan started running away – he regularly bolts and it scares us. He ran out of his elementary school last week. He ran into the parking lot at the library. How do we prevent this?”What’s happening before he runs?” she asked. “He’s getting overwhelmed by something. It’s a sensory reaction to bolt.” She, along with his current teachers at that time, helped us brainstorm solutions.

My aunt, Sue, had begun volunteering to read to Barbara’s camp bunk when the boys were there in 2008.  She retired from teaching kindergarten in Philadelphia a few years later, and this volunteering soon morphed into a teaching position in the Pre-K classroom in 2011. Sue and Barbara were now colleagues and friends, and Sue regularly kept Barbara up to date on Ryan.

I was in bed with the flu on that Tuesday in January 2013 when Sue called. She was crying. “Barbara died,” she finally was able to say through the tears.

What? That could not be possible. It was incomprehensible to imagine Barbara not being here anymore. Not being able to help the next group of kids. Not being here to see Ryan – or any of her kids – grow up.

“Why are you crying?” Ryan asked later. I told him.

He had seen Barbara a few times over the years and of course knew she was his preschool teacher and remembered what she looked like, but it had been four years since she was a regular part of his life. That’s a long time for a child to keep memories.

“What was she like?” he asked.

“She was so nice. She was one of the calmest, most patient people and you used to sit on her lap all the time and suck your thumb. She made you feel safe.”

“Yeah, she was so nice,” he repeated. “You loved her.” Back then, he sometimes mixed up his pronouns.

Over the next few days, the tributes from parents of her former students were shared on social media. I pushed myself to get as close to flu-free as possible so I could go to the funeral.

I had gotten a few of the Sinai parents together to start an Autism Speaks team a couple of years before that. We called ourselves Team Inspiration. In October 2013 at the Autism Speaks walk at Citizens Bank Park, our team tripled in size with many preschool teachers and families coming together to walk in memory of Barbara.  We did that for several years following as we transitioned from the big Philly walk to our own, less intense mini-walk.

I’ve talked to her in my head over the years.

“Barbara, Ryan is navigating middle school beautifully. He walks the halls himself!”

“Barbara, he can sit in a regular classroom for a good part of the day.”

“Now that Ryan has his headphones, loud places no longer bother him. Barbara, can you believe we’ve been to theme parks, sporting events and he even went to a U2 concert?”

“Barbara, Ryan discovered photography and he’s really good at it. He has such a talent!”

“Ryan is communicating so well on social media. And he started a Jewish page with Dan where he posts every week. How amazing that his appreciation of Judaism began with you!”

Every year when my post about Barbara pops up in my Facebook memories and I show it to Ryan, he asks, “How nice was Barbara?”

Like many of the questions he asks, he knows what my response will be and wants to hear it again.

“She was so nice. She was one of the calmest, most patient people and you used to sit on her lap all the time and suck your thumb. She made you feel safe.”

“Are your tears sad tears or happy tears?” he asked last year, which was shortly after his Bar Mitzvah. He was just learning what ‘happy tears’ meant.

“Both,” I told him.

“How can there be both? Why are they happy tears?” he asked “Because,” I answered. “I’m thinking about how far you’ve come since you were in Barbara’s class and how she would have been so proud of you.”

 “Barbara, Ryan became a Bar Mitzvah – he led the whole service and read from the Torah – without vowels. He was confident and calm and then had a wonderful time at his party.”

“Of course he did,” she would have replied if she were here. “I always knew he would.”

A Teacher’s Impact

In honor of Teacher Appreciation Week

As we’re approaching the end of our fiscal year, everyone in the US firm is getting their files together – asking for feedback from those they supported throughout the year and hoping the feedback tells a story of the high impact they’ve made on the firm and on their teams.

A recent experience with Ryan’s teacher got me thinking about the importance of not only giving teachers feedback, but sharing the impact teachers have had on our children with others.

Teachers are truly the unsung heroes in many parents’ lives – they put their heart and soul into educating, developing and nurturing our children. I feel this is even more amplified with special education teachers and have the utmost respect for those who are committed to working with children like Ryan – their patience, tolerance, and kindness is inspiring. And when I take a step back and look at where Ryan is now compared to two and a half years ago when he started middle school, the impact his teachers have had on him is incredible.

While Ryan is mainstreamed half the day in regular education classrooms, he is in the autistic support room for a few of his classes and has had the same autistic support teacher – and team – (aides, speech and OT therapists, and behaviorist) for the past three years. In fact, Ryan’s relationship with his autistic support teacher – Mrs. D – goes back to his elementary school, when she was his aide in the early years.

We recently attended our school district’s annual choral Music in our Schools concert – which includes the high school and middle school choirs and all of the 5th graders from four elementary schools. Ryan has performed in the middle school chorus concerts over the past couple of years and has done well, but last year we opted out of this particular concert, thinking it would be too much for him. It was mandatory this year since chorus is his elective, so we decided to push him to participate.

Dan, my parents and I were blown away at how nicely Ryan not only stood with a large group of students for more than an hour and sang the songs but then stood/sat off to the side in a crowd while the 5th graders performed. It was loud and a little chaotic with the moving back and forth, and Ryan remained calm and did not even use his headphones, which he’s relied on in past years for noisy, overwhelming situations.

Ryan’s ability now to do all of this is a direct result of the hard work and dedication of Mrs. D and her team. They are patient, yet firm, and have challenged him over the years to go beyond his comfort zone. He no longer needs an aide to go with him to chorus and has not had an aide with him at any of the concerts. Ryan has enjoyed chorus so much that he will be taking it as an elective in high school.

When I think about impact, Mrs. D and team have gone above and beyond their day jobs of teaching Ryan academics as well as improving his behavior and enhancing his speech and OT skills. They have also helped Ryan develop emotionally and as an independent student. He was far from this level of independence when he started middle school, and I never could have pictured him participating in chorus in this way. In Ryan’s early elementary school years, he would run away in these types of situations; as the years went on, he stopped running and remained with the group but needed constant redirecting and an aide, as well as his headphones. He has grown leaps and bounds thanks to Mrs. D and her team. He’s a different person.

I told Mrs. D how impressed I was after the concert. She asked if she could share that story with her supervisors. I offered to send them a note instead – let them hear praise directly from a parent. I put these observations into an email and sent it to the school principal and Mrs. D’s  two special ed supervisors.

The response was incredible. You’d think no parent had ever written a note like this. The principal and one of the supervisors replied with how wonderful it was to hear from me, and Ryan’s teacher was the most touched:  “I love this email. I cannot thank you enough. My whole team is so appreciative of this. Of course it goes without saying this wouldn’t have been possible without your positive partnership with the team! Thank you once again from the bottom of my heart! Ry has and will always have a special place in my heart.”

Wow – making her day made MY day. And inspired me to share positive feedback more often. Saying goodbye to this group of teachers on promotion day next month is going to be very difficult. Thank you, Mrs. D and team, for the extremely high impact you’ve had on Ryan during his middle school years!