X Days

Now that we’re past Memorial Day weekend, the end of the school year is quickly approaching. I’m eagerly anticipating a break from homework, tests, permission slips, driving, driving and more driving to and from activities…and X days. 

What are X days? Well, before I explain, think back to a less complex time period when you were in school and had specials. You probably had a day of the week assigned to each special – for example, art on Mondays, gym on Tuesdays, and so on. When there was a holiday or school closing – like MLK Day on a Monday – you just skipped art that week and moved on to gym the next day when you returned to school. Your parents could easily remember which special went with which day and help you accordingly. (eg “It’s Wednesday, so remember to put your library book in your school bag!”)

Fast forward to elementary school for my boys. Four specials – art, music, library and gym – were assigned A, B, C or D days. You might ask, “But aren’t there are 5 days in a week? How does that work?” Like this:

Week 1

Monday Art (A)
Tuesday Gym (B)
Wednesday Library (C)
Thursday Music (D)
Friday Art (A)

Week 2

Monday Gym (B)
Tuesday Library (C)
Wednesday Music (D)
Thursday Art (A)
Friday Gym (B)

And when there was a day off for whatever reason, the special just moved to the next school day. It took time to get used to it, but elementary school lasted six years, so we did. Sixth and seventh grade in middle school had a similar type of schedule.

Then Jordan and Ryan entered 8th grade and their school decided to try something new. Students could select one allied arts class (art, music, chorus, etc.) to take two out of four days, with gym and health occuring on the other two days.

A couple of months into the school year, I thought I was finally into the rhythm of Ryan’s schedule – chorus, health, chorus, gym, repeat. I needed to stay on top of this because Ryan sometimes did not remember what special he had and I didn’t want him to get marked unprepared if he forgot his gym uniform. For some reason, Ryan chose to bring his uniform home for me to wash after every gym day. (it’s not at all smelly as he doesn’t exert much effort in gym). I suggested he leave it in his locker and bring it home once a month, but he prefered having it cleaned each week. We even purchased a second uniform to just leave at school so I didn’t have to worry about remembering to send one in, but then both were sent home together and I had no idea which one was actually worn that week. (On the opposite end of the spectrum, Jordan’s uniform came home for the first time over winter break, but we won’t go there.)

Fast forward to late October. The weekend before I was leaving on a business trip, I prepared a list for Dan with what he needed to know about each day I’d be away; the list included which day Ryan had gym and needed his uniform. In this case, it was Tuesday.

When I returned home on Friday, my conversation with Ryan and Jordan went something like this:

“Mommy, you forgot to pack my gym uniform on Wednesday,” Ryan told me after we hugged hello.

“Ry, I wasn’t even here. And you had gym Tuesday, which is when Daddy packed it.  You didn’t have gym Wed.”

“I did. I had it both days.”

“How could you have it both days?”

“Because Wednesday was an X day,” Jordan jumped in.

Huh?

“A what day?”

“An X day,” he repeated patiently.

OMG “What is an X day?” I asked, shaking my head.

“It comes after D days. So you have A, B, C, D and then X.”

Right. That sounds completely logical to me.

“So he has gym twice now?”

“No,” Jordan explained slowly as if I was a child. “There’s Xa, Xb, Xc and Xd and they rotate. So this week was Xd, which means he had gym, but next week is an Xa so he has chorus. The X days are for kids who want to take an instrument or chorus, but only do that once a week instead of twice.”

I decided I might need a PhD to follow this and wondered how long this schedule had been in place.

“All year,” Jordan shared when I asked that question.

WHAT??

Clearly I missed an email or form explaining this. Which means I probably messed up gym before and just wasn’t aware. Great.

“So explain this to me again, Jord?”

“Here, let me write it out for you,” Jordan said helpfully and proceeded to make a calendar with ABCDXaABCDXb and so on to help me over the next month. At some point during the first week, the calendar disappeared, like many papers in our house often do. We redid it a few times and then I just gave up.

I feel like I do pretty well at keeping up with this type of stuff (or at least do well at faking it!), but I knew this was a losing battle. It was just not happening. Like The Gambler, you’ve gotta “Know when to fold ’em, Know when to walk away, And know when to run…

And so I folded and sent the following note in to his teacher (Disclaimer: this is not actually what I sent, but it was what I was thinking!)

Dear Ryan’s teacher,

Since Ryan is not the least bit athletic and likely puts forth minimal effort in gym, please keep his gym uniform at school as long as possible. When it does need to be sent home, please send it on a Friday. I can then wash it over the weekend and return it on Monday. It can then stay in his locker until his gym day, as I have no idea when he has gym and probably never will. Thanks so much!

Recently, Jordan informed me the schedule in high school is a little more complicated and includes Block Days. Can’t wait!

(Note: When my husband, Dan was reading a draft of this post, he said, “I’ve never even heard of X Days.” Given it’s late May, I now feel much more on top of things having found out about X Days in October! 🙂 )

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!

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”