The List

Tonight, I’ll be flying to Zurich for the week, and I’m reflecting on how much preparation it took to get us ready for this and every business trip  — and why all of that effort is worth it.

I’ve always related to the phrase ‘it takes a village’ when it comes to raising a family, particularly a child with special needs. We are very lucky to have family close by who come after school to help with Ryan’s homework and drive both boys to and from various afternoon activities. Dan’s been in a new job for five months which cut his commute in half, and he’s able to help out much more in the evenings now that he’s home at a decent time. However, like many working moms, I am typically the one bringing the details of our lives together – emailing teachers, figuring out logistics for various extracurricular activities and events, staying on top of homework and forms to sign, making sure gym uniforms and other necessities are packed on the right days, scheduling doctors’ appointments, and planning our weekends.

When you are the primary organizer of your family and you travel for several days, it’s a lot of work to get everyone else in your village ready to take on the load. I will pre-arrange carpools, prepare worksheets for Ryan to practice Spanish, speak to teachers, and do as much laundry as I can so Dan starts with all clean clothes; but what’s needed most is one place that outlines all the details for every member.

A few years ago when I started traveling internationally, I created The List. The List (yes, capitalized given the importance it holds with my family) maps out the days I am gone by morning, after school and evening. It includes what has to be done related to each aspect of the kids’ lives, who will do what, and every phone number and email address the family could possibly need during that time. My parents, Aunt Sue, and Dan anxiously await receiving their copy of The List before I go away. (And my dad, being the supreme list maker in our family, usually goes through it with a fine tooth comb and comes back to me with his own list of questions and corrections. 🙂 )

Six weeks ago, I traveled to Athens. The Athens List was more complex than most because 1) this was the first international trip I’d taken since high school began and therefore, the first List with all of the new high school details; and 2) I was away an entire week including a weekend, which is not typical.  I was also unusually busy leading up to my trip and did not have a chance to finish The List until a few days before leaving. Which led to a little panic.

“You haven’t sent the list yet,” my dad said anxiously after school, two days before my trip. “When will you have it?”  I actually had a printed copy ready and handed it to him.

“Look, it’s 25 pages,” my mom joked. My dad’s eyes lit up with excitement. He grabbed a pen and began reading.

Sue texted me later. “I don’t think I got your email with The List. Can you resend it?”

“I haven’t emailed it yet. Sending now,” I texted back.

Later, Dan sat on the couch and read it, asking questions along the way.

“I think I’m good,” he said. “I can do this.”

That confidence right there is the reason all the preparation is worth it. Because my family was now ready, I could go away and focus on just me. Let me tell you, it is an amazing change of pace to be away for a week and not have to worry about anyone except yourself. It’s kind of like a vacation. (albeit a vacation where you’re working crazy hours and not sleeping very much!) I was seven hours ahead of Philly and could not have gotten involved in the home stuff even if I wanted to, which made it easy to disconnect from the day-to-day. I did not even glance at Ryan’s Google sheet, where his teachers provide updates and tell us what the homework is, and we reply with our questions and concerns. Dan, my parents and Sue had it covered. I did not reply to any home-related emails, knowing Dan would do it. I didn’t look at grades on Schoology – those could wait. I did catch up with Dan and the boys as many days as possible around midnight by FaceTime on all the fun stuff and texted the family often. Ryan is not very into talking on the phone, but he loves social media and commented on all of my posts that week. For example, “Great pictures. I miss you and can’t wait to see the presents you bought me.”

A week is a long time. By Thursday night, I was ready to go home to see everyone. And the big, beautiful smile on Ryan’s face when he and Dan came to pick me up on Friday night was the best welcome home present.

Within 24 hours of returning….

Jordan – “Mom, ads for my show are due on Monday.”

Ryan – “Mommy, I have a Spanish test on Tuesday. When are we going to study this weekend?”

Jordan – “Can you sign this form and write a check for the unity walk? It’s also due Monday.”

Dan – “Ryan doesn’t want to do the unity walk, but his teacher said we should discuss it and let him know Monday. Here’s the form. What do you think?”

Ryan – “Mommy, who’s picking me up from Wings club on Tuesday?”

Dan – “Can you take a look at Ryan’s Google sheet? It looks like he has a grade for a test I don’t remember him ever taking…” 

Ryan – “Mommy, where’s my charger?”

Dan – “Which suits should the boys wear to the Bat Mitzvah tomorrow?”

Ryan – “Where are we having dinner Sunday?”

Ryan – “What are our plans next weekend?”

(These are just a sampling of the many questions and requests!)

Athens, take me away! 

Now it is time to do it all over again. This week’s List was also complex due to multiple activities some without clear schedules yet and an overnight theater conference for Jordan. But I think (I hope!) everyone is ready, and I’m so grateful to my family for jumping in once again. Goodbye, wonderful village – see you next weekend!

Walking in their shoes

“I’m exhausted. We need to get to sleep now,” Dan said. It was 9:30pm last Thursday.

“What a tiring night,” I chimed in, throwing things from the bed to the floor, swallowing two Advil to stop the pounding headache, and eagerly anticipating sleep — hopefully more than the 6.5 hours we seemed to be getting these days.

Why were we unusually cranky and tired? We had just returned from our first high school back to school night, where we had the chance to walk – and run – in our boys’ shoes.

But before I share the details of that, let’s rewind to earlier that evening. We were trying to quickly get through dinner so we could be at the school on time. Dan was in a good mood, chatting away, but I had mentally and physically hit a wall after a long week, and it was hard to concentrate. Dan was talking about something related to Mexico – at least I thought he was – but Ryan kept interrupting with questions every few minutes.

“They found one that was the link between reptiles and birds,” Dan said.

“Found what in Mexico?” I asked, half listening.

“An avian dinosaur…and it was in China,” he replied. 

Huh? When did we start talking about dinosaurs and China? Clearly I had lost track of the conversation a while back.

I went upstairs to replace my sandals with boots, since it was cooler outside by that point, and decided to lie down for a few minutes.

“Shouldn’t we go?” Dan yelled up the stairs after some time.

“Coming!” I called back weakly. I was in serious danger of falling asleep in a class. If that happens, maybe I’ll get a parent detention. Is that a thing? And if so, can you sleep during detention? It sounded heavenly.

Ryan was playing wii and Jordan was on his phone when we left. “We should really get you guys exercising more,” I suggested. “Look at the neighbors, always tossing a ball outside.”

“I’m tired,” Ryan said. “I don’t want to exercise.”

“We need our down time,” Jordan agreed.

From there, our night began.

7:00 — Once we arrived at the performing arts center (referred to as PAC) for the obligatory introductory speeches and were handed maps of the school, I suddenly woke up. I realized we were all the way on one side of the school and according to the map, we had minutes to get to homeroom, which was on the opposite side and up a flight of stairs. From homeroom, Dan and I would be splitting up and each following a different boy’s schedule. Each class was eight minutes, with five minutes in between to get to the next class.

7:20 — The bell rang. “We have to jet,” I said to Dan.

But there would be no jetting. We got into the hall and encountered a wall to wall traffic jam of people. Waving to other parents we knew, we made our way down the hall in a painfully slow manner.

“This is ridiculous. Why doesn’t anyone move?” I complained.

“It’s like this every year,” one of the parents said.

By the time the hall finally cleared, we still had half the school to get through in order to find the boys’ homeroom.

“Come on!” I called to Dan, who was really lagging behind.

“I’m tired,” he grumbled. “Where did your second wind come from?”

“We’re late. Can’t you go any faster?” I was power walking through the gym and up stairs.

Grunts and various choice words came from behind me.

7:35 — Finally, we reached homeroom and collapsed into two seats. We saw a couple we hadn’t talked to in awhile and hugged hello.

“I didn’t know the boys were in homeroom together!” I said.

“Homeroom? This is first period,” the mom said.

What?? We quickly found their homeroom teacher, got their schedules and started sprinting toward the next class. I was going to Jordan’s English class and Dan to science for Ryan.

7:40 –– I made it right on time to English and found a seat next to a couple I knew well from middle school theater.

“This is crazy!” I said to the mom, catching my breath. I was regretting my decision to put on cute boots. Sneakers would have made this much easier.

“Imagine the kids doing this all day with their 10 pound backpacks,” she said. “They don’t ever go to their lockers.”

Jordan had told me this. He said he doesn’t have time, especially since his locker is nowhere near any of his classes.

7:48 — After English, I went down the hall and the stairs to Spanish and texted Jordan about the insanity of how big the school is and how impressed I was that he gets anywhere on time. My wrist had buzzed by that point signaling I hit 10,000 steps for the day. 

8:01 —  From Spanish, I went all the way back to PAC for chorus. At that point, I could have used a bathroom break but I’d probably end up missing half of the next class if I went looking for a ladies room. In chorus, I sat next to a dad who told me gleefully this was his last back to school night. His child was a senior. I told him it was my first at this school.

“Sorry to hear that,” he said sincerely. “It’ll be over soon, though, and then you don’t have to think about it again until next year.”

8:14 — After chorus, it was back in the other direction to social studies. I was sweating a little and decided I should have taken five minutes to change after work because the long sleeve blouse I had on was not very conducive to all this movement. No wonder my boys wear t-shirts well into Fall.

(Side note: Yes, in between all this running around, the teachers did share a little about themselves and the curriculum!)

8:28 — I saw Dan in the hall as I was walking from social studies to math.

“Where do I go?” he asked. “I’m lost,” he said.

He showed me Ryan’s schedule, which indicated he had social studies next and the same teacher as Jordan. However, Ryan had written a different room number on his schedule than Jordan did. Thinking it was probably a mistake, I showed Dan Jordan’s room number and sent him on his way.

8:32 — My phone buzzed as soon as Jordan’s math teacher began talking. It was Dan with rapid fire texts:

“Ugh. ok, so Ryan’s social studies teacher is not there, where do I go?”

So lost. I’m just in the hall”

“Wandering”

I texted back, “Maybe Ryan had the correct room after all. Try that one.”

My phone buzzed – Dan again with lots of texts:

“He is not there”

“Another teacher is”

“I have no idea where I am”

“I’m outside the PAC”

“I guess I’ll wait”

“Till 6th period”

“I’ve never felt more lost”

“And rushed”

“I’ll wait”

I had missed most of what the math teacher said.

“Trying to listen,” I texted back. “Will meet you at the front when this is over.” I put my phone away.

8:40 Off to science. My phone buzzed again as I was walking – this time, with a notification from Fitbit. Overachiever. You have exceeded your step goal by 2500 steps.

8:53 — Back to PAC for the last class of the day, theater, where I knew several parents.

“I saw Dan in the hall having a mini meltdown,” one of them joked. It turns out Dan never found Ryan’s last period class, either.

Hmmm… Dan’s ability to find his way around while tired needs a little work if we ever make it on The Amazing Race. (Random side note: Whenever I watch the final episode of an Amazing Race season, I picture us on it one day running to the finish line as the first place winners.)

When the bell rang, I rushed out of the theater to find Dan. He looked a little worse for wear, but was relieved to see me.

“Next year, maybe we can just stay together and do one of the schedules,” he suggested.

During the car ride home, we marveled at Ryan’s ability to seamlessly navigate the school despite how overwhelming it probably is for him with all of those people. And how hard it must be for both of them to carry heavy book bags all day. Not to mention all of those different teachers and subjects. Of course we had experienced their schedule on steroids as the boys don’t change classes every eight minutes, but the evening did give me a small taste of what it’s like to be in their shoes. My second wind was gone. I felt a headache coming on, and the week officially had caught up with me.

“That. Was. Exhausting.” I said to Jordan when we got home. “Look,” I showed him my fit bit. “I’m at almost 15,000 steps!”

“Now you see how much walking I do,” he replied. “So when you think I’m not exercising, remember tonight.”

Touché!

Welcome to high school

The start of anything new can often be confusing and overwhelming. We’ve only had seven actual days of high school so far, but with everything we’ve navigated during that time, it seems like we should be well into the year by now.

Let’s begin with the mornings. High school starts at 7:23 am, so we initially set our alarm for 5:45 am to make a 6:43 am bus. Waking up daily with a 5 on the clock is a hard adjustment. It’s dark. It feels so early. I am exhausted all day (caffeine intake has doubled). Now, they did tell us at orientation to let our teens wake up on their own as they are old enough to use an alarm and should be responsible for themselves. I don’t think they’ve met my boys, who sleep through alarms, through the light Dan turns on when he tells them it’s time to get up, through my second wake up call to them 10 minutes after that… therefore, Dan and I will be getting up in the fives for now.

Once he is up, Ryan is extremely motivated to be ready on time for his bus (which comes right to our house) and plans his morning routine so he make it. However, on Thursday, the bus never came. After it was 10 minutes late, we called transportation, who informed us the bus actually did arrive, waited, and left when no one came out.

“What time did the bus get here?” Dan asked, confused, as Ryan is never late.

“6:35,” the person on the phone told him.

What??? Apparently, transportation arbitrarily decided to change Ryan’s pick up time because 6:43 did not give the bus driver enough time to pick up all of the kids. Dan politely told them it would have been nice to know this, especially given Ryan’s anxiety when the bus never showed. (To their credit, they sent a van to get him right away that day.) We are now getting up at 5:35 am to make this new bus time.

Moving on to gym… Despite us telling Jordan to get to bed early, he cannot seem to fall asleep before 10:00. On Thursday, Jordan came home with a cold and low-grade fever, which I attributed to his lack of sleep.

“If I still have a fever tomorrow, I want to go. But you can pick me up after third period, which is gym,” he said.

Yes, you read that correctly. Jordan was planning his day around gym. On Wednesday, we had received a note from the gym teacher letting us know if a student misses gym because of an absence or because they forget their uniform or swimsuit (9th grade boys take swimming the first half of the year), they have to make up the period. Now I am all for physical fitness and I think my boys could use a lot more of it, but make up an entire gym class?

Our options for gym make-ups are: during a study hall (neither boy has a study hall this year); during an extension period (which happens once or twice a month – I don’t really understand this part of the schedule yet); or – wait for it – at 6:25 in the morning during zero period (don’t even ask what that is)! As you can imagine, none of us want to wake up any earlier, so we are all extremely motivated to make sure Jordan and Ryan are in gym and prepared for it with their swim trunks. Of course Ryan has gym on A and C days and Jordan on B and E days. These letters actually coincide with different days each week, but I’ve been on top of it for the last seven days. I think that’s worthy of a high five or a cheers to Mom moment. (Ok, being realistic, I’m taking bets for how long it is until we lose track of the schedule and someone forgets his trunks!)

Jordan has also experienced culture shock where homework is concerned. This is a kid who I don’t think cracked a book at home during his entire middle school career (he managed to get his work done at school each day), yet got great grades, so I couldn’t complain. Now he comes home and works for hours. Last Wednesday, he had an orthodontist appointment after school, followed by a school theater meeting in the early evening. He was visibly stressed about not having time to do his homework.

“We’ll be home from the theater meeting before 7. You have all night,” I told him.

“Do homework at night?” he gasped, horrified.

“Welcome to high school,” I said.

The orthodontist said Jordan could get his braces off in eight weeks. However, since he would have to miss school if he did that, he is choosing to wait an additional two weeks so he can get them off on a half day. Wow. If someone told me a few months ago my son would voluntarily delay getting his braces off so he could be in school all day, I would never have believed them.

Despite the homework stress, Jordan has identified multiple activities he wants to join, which are all extensive time commitments. On the one hand, it makes me happy he wants to get involved, but on the other hand, of course I’m stressing out about it from a scheduling perspective.

Finally, let’s talk about Ryan’s classes. This is the first year where Ryan has had a different teacher or aide with him for nearly every class. He takes three classes in the autistic support room in the morning and is mainstreamed with an aide for four classes in the afternoon. That means there is no one consistent individual who can answer our questions – and we’ve had many. Most had to do with the homework – where to find it and what Ryan actually has to do or study vs the rest of the class as many of his classes are modified.

The district has a portal called Schoology, where teachers post assignments and students can work on them and turn them in. On a few days, when my parents or my aunt were with Ryan after school, they would help him do the Schoology assignments. We would then learn he should have been doing a modified assignment, which could be found in one of many possible locations – in Google classroom, in his email, or in one of his seven folders in his schoolbag. Also, some of the assignments listed on Schoology were actually done in class, but that wasn’t made clear.

You’re probably thinking, why don’t you ask Ryan what he has to do? We’ve tried. Example conversations:

“Ryan, what do you have to do for this Spanish poem project?”

“I don’t know.”

“You were there. How do you not know?”

“It was a few hours ago. I forget. I don’t want to think about school anymore.”

Or

“Ryan, it looks like you changed your Google password. What is it?”

“I don’t remember.”

“Well, we can’t get into your account and do homework if you don’t remember.”

“Good, I don’t want to do homework. It was a long day and I want to relax.”

Between all of the e-mails to various teachers trying to make sense of everything, and with one project due last week and two quizzes this coming week, I was pulling my hair out by Thursday night. I started thinking about how we could make this process less complicated. What we needed was one document everyone could access on a daily basis to let us know 1) what Ryan did in class; 2) what his homework is for that day; and 3) where to find it. In that same document, Dan and I (or any family member working with Ryan) could ask questions and the appropriate teacher or aide could answer.

Since every teacher works with Ryan on his Chromebook (similar to a laptop) at some point during the day, I decided to create a Google document (doc) for all of us to use. Dan and I can also easily log in at any time to update it and see what’s been added. The intent is for this to be the first place we look for information, and Ryan’s teachers can direct us to other sites from the Google doc, as needed.

Dan, who has never used Google docs, was amazed as he logged in on his phone and watched me updating the doc from Ryan’s Chromebook in real time. (Cue song, “A Whole New World.” Seriously, if you’ve never used Google docs, it makes working on a project with multiple people so much easier.)

I sent the doc to one of Ryan’s aides and his autistic support teacher and they loved it. Ryan’s aide added a table to make it even easier to follow, and when Ryan came home on Friday, it was filled in and questions were answered. Whoo hoo! We had a solution!

Friday night around 10:00, Dan found me in bed, about to pass out.

You look exhausted,” he said. “Do you want me to turn out the light?”

“If we put on something good on TV, I can probably rally till 10:30,” I told him.

Yep, it was a wild Friday night in the Singer house. And we haven’t even had a full week of getting up in the fives yet. Imagine how fun I’ll be after one of those!

Only 66 schools days until winter break!

Weathering the Storm

For many parents of children with autism, schedules are a lifeline. Knowing what to expect each day — and when to expect it — is often critical for minimizing anxiety and as a result, tantrums.

We learned quickly if we created a schedule with pictures and times, Ryan would read it over and over, become familiar with it, and remain calm. His teachers did the same in school. As he got older and could read, just giving him a list of dates and events or a calendar with our plans served the same purpose.

But what happens when that schedule unexpectedly changes? There is that little thing called the weather which has gotten in the way of many plans and caused many a tantrum over the years. Ryan’s reaction to weather events can be a storm unto itself.

In the early days, it was difficult to reason with him if something got cancelled – he didn’t understand why his schedule suddenly changed due to rain or snow and would scream and cry.  

As he’s matured, Ryan has heard many times that sometimes plans change and we have to be flexible. Does he understand? Yes, in theory. Is he accepting of it? Not always. Does he talk incessantly about how he wants to do the activity that might get cancelled and threaten to ‘freak out’ if it does? Of course. For hours.

And for some reason, he seems to think I, alone, control the weather.

This is a typical conversation:

“Mommy, make it sunny!” Ryan will often whine if it’s raining and we can’t do something.

“Ryan, I don’t control the weather,” I’ll respond.

“Who controls the weather?”

“The weather is controlled by what happens in the atmosphere. Not by a person.”

“Well, tell the atmosphere to be sunny.”

Winter is very similar. Back in elementary school, Ryan hated snow days. He wanted to be in school every day the calendar said there was school. Any chance of snow caused anxiety.

Similar conversations:

“Mommy, tell the snow not to come so I can go to school.”  

“Ry, I don’t control the weather.”

See dialogue above for the rest.

“Believe me, Ryan,” I would often think to myself, “I have no desire for snow. Snow messes with my schedule, too. If I had the power you seem to think I do, our weather would be amazing year-round.”

These days, Ryan is a little more flexible about snow (as long as it doesn’t ruin his weekend plans). He’s ok with school closings – but only full days, as late arrivals mean he has to adjust to a slightly different schedule.

One night this past year, we were discussing what might happen with school the next day.

“I don’t want a late arrival, Mommy. Tell the woman to close schools for the whole day.”

The woman? Dan, Jordan and I all looked at each other in confusion. Mother Nature? G-d? Me?  

“What woman?” I asked.

“The woman! You know, the one on the phone!”

Ohhh! “The woman” was our superintendent. Years ago when we started school, we had to provide our phone numbers and e-mails for mass messages from the district about things like school closings. We gave them every number we have, several e-mail addresses and opted in for text messages, as well, just in case we missed something. As a result, each time there is an early dismissal, late arrival, or school closing, four phones will simultaneously ring, and multiple e-mails and text messages will ping with pre-recorded messages, where we’ll hear the voice of our superintendent with the news.

Since last winter was a horrible one, I think the order of who called our landline the most (yes, we still have a landline. The cell signal is terrible in our house) was probably my mom, my sister, and the superintendent. If we’re lucky enough where she makes a decision at night rather than 5am, I’ll answer one of the calls on speakerphone so everyone can hear her relay the news.

“You mean [superintendent‘s name]?” I asked.

“Yes!” Ryan said, excited I finally got it. “Call her and tell her to close schools.”

Right,” I thought. “Since she and I are BFFs, I’ll just give her a call right now and tell her how to run her district.

Fast forward to this past weekend… Ryan loves to swim. We go to family and friends’ pools a lot in the summer, along with our gym pool. We watch the weather religiously the week leading up to any major outdoor event and this week was no exception. We had plans at two different pools. Saturday we were going to swim with friends at a rooftop pool in the city, and yesterday we were planning to visit Dan’s sister and family, who have a beautiful pool at their house. As the week went on, the forecast did not look pretty for either day.

Ryan watched the weather reports nervously. Each day: “Mommy, I want to swim this weekend.”

“I know. So do I. But we can’t control the weather.”

Friday: “Mommy, I’m going to freak out if we don’t swim tomorrow.”

“You’re 14 and too old to freak out.”

“I don’t want it to rain. Make it sunny. Please, Mommy.”

Serenity now! Or at least some wine!

Saturday was a washout. It was a long day in the house, with Ryan telling me how bored he was, how I needed to make the rain stop for Sunday, and how much he wanted to go to Aunt Anna’s pool.

We fell asleep to pouring rain. I prayed for it to stop the next day – at least for a few hours. Yesterday morning started off cloudy but dry. By the time we got to Anna and Mike’s house, there was sun! We swam for several hours and it actually turned out to be a decent day. Ryan was calm, content and smiling.

At the end of our visit, we made plans to come back at the end of the summer.

“Mommy, will it be sunny then?” Ryan asked.

“Ry!” I said, exasperated,It’s 6 weeks away. I have no idea what the weather will be then! Look at this gorgeous day you ended up with!” I gestured to the blue skies and sun. “How about appreciating it?”

“Thank you for the sun, Mommy,” Ryan said.

“Ryan,I laughed. “I don’t control the weath–” Oh, never mind. I give up. After a weekend of taking beatings for the rain, why not take credit for something good?

I smiled sweetly. “You’re very welcome, Ry.”