Teaching Tolerance

On Thursday afternoons, my Aunt Sue and Ryan have a tradition. After Ryan does his homework, Sue takes him to Starbucks for a treat. Some days they read together, and other days they just talk. But every Thursday, Ryan will take a picture and post it on Instagram, with a comment about how much fun he had. The Starbucks staff knows him and are always very kind to him. It’s one of his favorite places.

Yesterday went a little differently. When Sue and Ryan walked into Starbucks, three middle school age girls were sitting at the front table. When they saw Ryan, they began whispering, pointing and laughing. Sue immediately was aware they were making fun of him. She bought Ryan his treat and sat at a table on the other side of the room, watching as the girls took out their laptops, looked at something, then looked back at Ryan continued to laugh. Sue was fighting back tears by this point and wondering how aware Ryan was of what was going on. He can be pretty perceptive. She asked him if the girls went to his school, and he said yes.

When Sue went to throw out their trash, she passed by the girls’ table and felt compelled to say something.

“Hi,” Sue said. The girls looked up, curious. “What grade are you in?” 

Two of the girls said seventh and one said eight (Ryan’s grade).

“I’m a teacher,” Sue continued. “And one of the things I teach students is tolerance. Do you know what that is?” 

The girls nodded and affirmed they did, exchanging glances and looking a little scared.

“Good,” said Sue, pointedly turning her head to look at Ryan. “Then remember to always be tolerant.” 

And with that, she and Ryan left. (Way to go, Sue!)

When I saw them a little later, Sue relayed the story quietly to Jordan (Ryan’s twin brother) and I. I asked Ryan afterwards if he knew the name of the eight grader at Starbucks. When he told us, Jordan and I were shocked, as this was a girl who was at Jordan’s Bar Mitzvah last year. Who sat there and heard him talk about inclusion and sacrifice – including the sacrifices Ryan makes to adjust to what can sometimes be a loud and unpredictable world. Although Jordan does not see her as much this year, we couldn’t imagine her making fun of anyone.

Jordan and I agreed if he had been with them at Starbucks (once in awhile Jordan joins Sue and Ryan) the whole situation never would have happened. No one would dare make fun of Ryan in front of Jordan. He is very protective of Ryan and he thinks the kids know he would not let them get away with it.

Our district does a lot to promote anti-bullying and many students at Ryan’s school have known him since kindergarten. The vast majority are either kind and inclusive or don’t really pay attention to him. I know there are also those who make fun of Ryan – or anyone who is a little different – behind their backs. I never thought there are others who would blatantly laugh in his face. At his special place.

It made me very sad. I know some kids are immature or insecure and may be completely different people when they grow up. It’s just too bad they don’t have good role models now to help them get there. Role models like my friend’s daughter, who recently defended a boy with autism at her new school against bullies, “Because,” she said, “What if that were Ryan? It would break my heart to see Ryan picked on like that.” Or like my other friend’s daughter, who defended Ryan in gym class a few years ago when another boy was whispering about him. Or like Jordan, who has written a book and many songs in support of kids with autism.

I guess we just have to take comfort in the fact that there are more good and tolerant young people in the world than intolerant ones. And hope they can stand up for the kids who need them to.

Every Thursday, Ryan posts a picture of his time at Starbucks on Instagram with a comment about how much fun he had. I believe even if he didn’t express it or answer our questions about it, Ryan knew to some degree what those girls were doing yesterday. Because it was the first Thursday he did not post a thing.

My Mental Energy

One of the challenges many parents of children with autism face is dealing with behavioral issues. In Ryan’s case, he loves doing something he knows he shouldn’t and reliving the story after it happens. And the dentist and orthodontist exam rooms have been the source of many a story.

For example — A few years ago, I took Ryan to the orthodontist for a consultation. After he was examined, I met with the orthodontist in his office. During this meeting, I was not aware Ryan was running through the exam room, videotaping himself touching the equipment with a dental hygienist running after him trying to get him to stop. When I realized what he was doing, we left very quickly. Several months later, I was going through the videos on my YouTube account when I saw one titled “Dentist’s office.Ryan had uploaded the entire event and it had 500 views! We’ve had other incidents over the years. Like the time Ryan hit the X-Ray button over and over, wasting the office’s film, while I was trying to talk to the dentist about Jordan’s exam. Never a dull moment.

Ryan’s now a teenager and we’ve had a few incident free exams recently, so I am optimistic when I bring the boys in on their day off from school for a cleaning. I’m planning to spend 30 minutes in the waiting room taking an energy audit.

My firm recently rolled out a Be Well Work Well initiative to help us better manage our energy across four dimensions – physical, emotional, mental and spiritual. You start by taking a quiz – or energy audit – to see where you’re currently operating and then receive tips and resources on how to increase your capacity in each dimension of energy. The intent being if your energy is up, you’ll feel better, and ultimately perform better at work.

We get settled in chairs and Jordan is called back first. Then the hygienist comes out and calls Ryan’s name. He gets up and I remain seated.

“Mommy,” he looks at me confused. “Aren’t you coming back with me?”

“Nope,” I answer. You’re older; you can go yourself. I’ll come back when you’re finished.” Then I add as a warning, “Be good.”

The waiting room is quiet and I turn to the survey.

I don’t regularly get at least 7-8 hours of sleep and/or I often wake up feeling tired. Definitely true. Sleep is an ongoing issue. But that’s for another post.

I often eat lunch at my desk, if I eat lunch at all. True. At least when I’m working from home. Power bars are the way to go. They only take 30 seconds to unwrap and a few minutes to eat. (This, of course, is not the answer they are looking for.)

I don’t do cardiovascular training at least 3 times a week.  False. On average, I’ve been getting my 3 days a week at the gym in. Score one for me!

I have difficulty focusing on one thing at a time and I am easily distracted during the day…

“Ryan’s mom?” I’m interrupted by the dental hygienist. It’s been all of 5 minutes.

“Yes.” I look up.

“Can you come back?”

“He’s finished?” I ask, confused.  

“No.” she looks at me, unsmiling.

Oh s**t.

“This way.” She directs me to a chair in front of where Ryan is sitting.

“Hi Mommy,” he gives me a devilish smile. “Look what I’m doing!” He’s found the nozzle with water used to rinse and is holding it up.

“Yes,” says the hygienist. “We just talked about how spraying the water all over the place makes the floor wet and is not very safe.”

“What was I doing?” Ryan asks as he grins at me.  I shake my head. I’m not telling him any more bad behavior stories because it only fuels more stories.

“Ryan!” I admonish. “Come on, you know not to do this. Stop touching everything or I’ll take your phone away.”

He’s temporarily quiet and I turn back to the energy audit.

I have difficulty focusing on one thing at a time and I am easily distracted during the day…

Whoosh. I hear the sound of the other nozzle that sprays air.  Ryan is giggling and has somehow managed to grab this nozzle while the hygienist is cleaning his teeth and is videotaping the episode on his phone with his other hand. Impressive motor skills, I have to say.

“Ryan, I’m taking your phone,” I snap, grabbing it from him.  You can get it back later when you’ve stopped this behavior.”

“His giggle is very infectious,” says the hygienist, clearly much more relaxed now that I’ve taken over as disciplinarian.

“Mmm,” I mutter. I see the video is on snapchat.

“I’m not sure how to delete this thing,” I say out loud.  I don’t get snapchat at all.

“Just make sure it doesn’t turn up on Facebook,” the hygienist jokes.

Ryan is finally quiet and letting the hygienist clean his teeth.

I have difficulty focusing on one thing at a time and I am easily distracted during the day… Ok, obviously that’s a yes. Moving on.

I rarely have any time when my mind is quiet and free of thoughts.

“Mrs. Singer?” It’s the dentist who’s examining Jordan. “You need to come look at this. He’s missing a metal plate on the back of his tooth which is affecting his bite significantly. And two of his brackets are loose.”

Ugh…

“I’m taking him to the orthodontist to get his braces tightened in two weeks so I’ll have them look at it then,” I tell her.

“This definitely can’t wait two weeks. His bite could be ruined. You should call right away. Get in tomorrow if you can.”

Of course I should. Sigh… I wonder what the chances are they’ll have the coveted 4:00 pm appointment open and if they do, could my dad take him? Or will I have to pull him from school and move around conference calls?

I rarely have any time when my mind is quiet and free of thoughts.

But seriously, can any parents actually say No, this is false. I have plenty of time when my mind is quiet and free of thoughts. I often go into a totally zen mental state and come out refreshed and reinvigorated.”

And if so, who are they and what are their secrets?

In the end, I score a zero in the mental energy category. A zero.

But there’s a silver lining in the day – I don’t have to take Ryan back to the dentist for six whole months!

[Disclaimer – I wrote this in November, and we’re approaching Ryan’s spring appointment. As you can imagine, I am very excited to do this again. 🙂 ]

The Journey Begins

As a working mom of twin boys – one with autism – I find life throws me something unexpected, challenging, exciting, or heartwarming almost every day.  All stories and insights shared in this blog represent my personal views and insights.

I recently attended a webcast with others in my office who are part of PwC’s Disability Caregivers’ Network. We watched our colleagues share their personal stories as parents of children with special needs, including how they balance work, life, and the unique demands they face, and how the firm has supported them through their journeys. There was not a dry eye in the room when the webcast ended, and I walked away inspired to share my own story.

As a mom of 14 year old twin boys, Jordan and Ryan, I have many experiences, thoughts and feelings to share – some funny, some serious, some frustrating and some heartwarming. When I think back to the first couple of years of Ryan and Jordan’s lives, which I’ve dubbed The Zombie Years due to the severe lack of sleep, all my husband, Dan, and I wanted so badly was to survive them. We thought if the boys could just start sleeping through the night, life would become easier.  In retrospect, we should have held onto the innocent baby days as long as possible, as dealing with developmental delays and finally getting an autism diagnosis at age three for Ryan was only the beginning of a long road.

Over the last 11 years we’ve laughed, we’ve cried, we’ve screamed, we’ve loved, we’ve learned and we’ve grown. While the road ahead will likely be filled with more twists and turns, this blog, Tiny Giant Steps (also the title of a poem my mom wrote), celebrates the journey so far.

People often ask – ‘How do you do it? How do you balance being a mom of twins – and one who has special needs – with a demanding job and manage to have a social life outside of that?’ I don’t think I ‘do it’ any better than other parents. Dan is engaged and always willing to help however he can – which usually involves food shopping and cooking (he’s much better than I am), doing undesirable (i.e. smelly and more physical) household chores, and taking over whenever I’m out of town. We’re so thankful to have a support system of wonderful family members who live close by and amazing babysitters we’ve ‘adopted’ over the years as surrogate big sisters to Ryan. And I’m very lucky to work for a firm that values work-life balance and actively promotes ‘Be Well Work Well.’

I may make it look easier than it is because I’m typically a positive person and can laugh at many of our situations and turn them into entertaining stories, rather than taking them too seriously. Sure, having a child with autism is serious and certainly not easy, but I’ve found having a sense of humor is essential to surviving.

If you’re interested in reading more about my experiences and insights, look for posts here every 3-4 weeks – maybe even more frequently when I get inspired. In the meantime, I’m sharing a link to a blog I wrote which Autism Speaks published in 2015, titled ‘Four things I’ve learned raising a child with autism.’ It’s still very relevant today and is the epitome of ‘Tiny Giant Steps’ – in other words, celebrating those accomplishments that may seem so small to one person but are huge for others.

Thanks for reading and I look forward to sharing more with you soon!

Continue reading “The Journey Begins”