Take a Deep Breath

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It’s hard to believe my last blog was about air travel – ahh the good old days when you could just hop on a plane and go visit friends for a long weekend. Seems like a year ago when it was only five weeks.

Like me, your social media feeds are probably flooded with COVID-19 articles, news reports, and predictions from experts and those who think they’re experts, along with the more fun videos, memes (I just love the Memes), personal posts and opinions, and photos showing how people are spending their days. While all of the media can be a little (well…sometimes extremely) overwhelming, it’s incredible how people are coming together online to share what’s working as they balance work and family, homeschool their kids, and experience the outdoors while maintaining social distancing. And it’s comforting how so many in person activities we’ve taken for granted such as Shabbat services and Confirmation class events, The Friendship Circle, and voice lessons have quickly mobilized to an online environment.

A little over a week ago when we learned all PA schools would be closed for two weeks, Ryan was not a happy camper. While he was excited for a break from school, he overheard us talking about how the closing would likely go beyond the 30th. He wanted to know exactly what his schedule would be and when school would reopen. We didn’t know what to tell him. The school sent over some enrichment links but was not planning to formally teach during the two weeks. (they said if the closures go beyond that, distance learning will begin). Ryan spent the better part Friday, 3/13 whining about what he would do all week and when would school open again. He also wanted to know if he would go back to track in time for the meets – he had just started Unified Track at school and really enjoyed the two practices they had.

We spent time that first weekend creating a detailed schedule which I put in Google sheets for Dan, Ryan and me to access. His teacher had sent links to websites he could visit to maintain his skills, so I blocked his days off in small chunks and included a combination of:

  • Independent work (eg math – go to Khan Academy; English – go to Newsela.com or ducksters.com),
  • Skills he learned through his community-based jobs (alphabetizing, office skills, etc.) with a family member
  • Independent living skills (eg cooking, cleaning the house, laundry).
  • Outdoor time – walking, taking pictures of nature
  • Free time

It was amazing to see the anxiety on Ryan’s face disappear as he went through and likely memorized the schedule. This is a kid who needs structure and we gave him that.  The question was – would he follow through with it?

To our delight, yes! Given there was no need for him to be up early, breakfast was scheduled for him to make and clean up independently from 9-9:30, which he did every day. Then, there were 30 minutes slots throughout the day of independent work on his computer – whenever I came to check on him, he was working away. But he really preferred and looked forward to the time with family and surprisingly got into cleaning the house with Dan! He and I took a few walks together and I was amazed at how quickly he now walks – I had to work to keep up with him, the boy who used to lag behind all of us when we went anywhere. (One of us would always be calling “Ryan, let’s go, you need to walk faster!”) He will be great at track one day.

I cannot imagine this working at all a few years ago and am very grateful how independent Ryan has becomes since starting high school.

Then there’s Jordan. I saw on GMA that even if your high schoolers are independent, it’s important to make sure they have somewhat of a schedule. Jordan scoffed at that.

“I’m fine. I’m keeping busy and I don’t need to account for every hour.”

I pressed him – “I don’t care about every hour. I just want to know what you’re keeping busy with. It needs to be more than your phone.”

I texted him ideas from my basement office as they came to me. He could:

  • Study for his learner’s permit exam (who knows when he’ll actually have the chance to take it – but hey, he’ll be ready!).
  • Prepare for the SATs – we’ll order a book from Amazon and by the time the Fall exam rolls around, he’ll crush it.
  • Sign up for a free screenwriting class online through futurelearn. Jordan recently expressed an interest in taking screenwriting at college and I’d like to make sure he knows what it is and really likes it before picking a college because of that specific major.
  • Write a musical about COVID-19.

“You’re throwing a lot of stuff at me,” he texted back (to be fair, I threw these great ideas out over the course of 24 hours. It’s not like they were rapid fire things to do.)

Guess which one he chose? If you know Jordan at all, you guessed right – he is writing a musical about a school whose show gets cancelled because of COVID-19 (art mirroring life!). He’s been composing music and writing dialogue. (Anyone have a contact on Broadway?) Surprisingly, I also found him doing some optional schoolwork every now and then. As the opposite of Ryan, this is the kid who doesn’t need a schedule and is happiest when he can just be and figure it out as he goes.

While I am grateful for Ryan’s independence, the anxiety around the unknown means Ryan asks more questions than usual. In fact, he asks them All. Day. Long.

Ryan – “When will school open again? In April?

Me – “I don’t know.”

Ryan – “In May?”

Me – “I don’t know. This has never happened before, Ry. We just have to be flexible and see.”

Ryan – “Are we going back at all? What if we never go back? Can’t you call someone to find out?”

Me – “RY….” (Sigh)

Ryan – “What will we do for my birthday? (early April) Can the family come over? What about the Seder?

Me – “We can facetime them and we can make a cake and order from wherever you want. I don’t know about the Seder. Dad thinks we could do it on Zoom.”

Ryan – “Can’t just one family member come over? Will we be stuck in the house for Dad’s birthday, too? (May) Will we be stuck inside for your birthday?? Will we get to go on our vacation to Hawaii?” (both in Aug.)

“Oh Ryan,” I thought. There aren’t enough bottles of wine to deal with my feelings if we are still here in August.”

I think the unknown is what’s most difficult for many people, not just Ryan. I was talking to my aunt about this the other night, and we both agreed if we knew this would end, say, on May 1 – there would be a date to work towards. I would think – ok, this sucks that we can’t see anyone or go anywhere for the next five+ weeks, but it’s a finite point in time and we can start a countdown. When you read articles saying this could go well into the summer, it’s just hard.

Earlier last week, I was having some trouble catching my breath – I had to breathe frequently and deeply – and was afraid I had caught the virus. I kept checking my temperature, which was normal.

“You’re fine,” Dan said, trying to reassure me. “You have no other symptoms.”

He was right – no cough, no fever, no weakness.

“But people are walking around with the virus and don’t even know it. What if I have it with this one symptom?” This was on Wednesday, right after I cut my power walk short because the need to breathe deeply made it too difficult to continue. (I’d been enjoying the beautiful sunny afternoon for 20 minutes while reading COVID-19 articles on my phone.) This was the same two mile walk I’ve been taking in my development for 17 years, and I was a little worried.

On Thursday, I realized I’d gotten through the whole day without feeling the need to breathe deeply. I was busy on conference calls most of the day and hadn’t seen Ryan as much. When I saw him later, he jumped into his questions.

“Mom, will I have to repeat sophomore year?” “Will we have my track meets? “What happens if I don’t go back to school in June?” “Will we have ESY (Extended School Year)? “What about camp? Will my camp open?” “Will Jordan’s camp open?” “If we don’t go to Hawaii, what will we do?” Will school open in September?”

And just like that, my chest got tight and I had to take several deep, cleansing breaths. Ryan’s questions and not being able to answer them. The barrage of media. The unknown. It was all causing a physical reaction.

When I caught my breath again, I replied, “Ryan, I can’t answer your questions. I just. don’t. know. No one knows, and I get that it’s scary for you to not have answers. I promise you when I do know anything, I’ll tell you. But please stop asking questions right now. Ok?”

“Ok,” he said. (He stuck to that agreement for the rest of the night.)

We hear day after day how these are unprecedented times. Everyone is going to react and be affected differently. However you feel and respond – it’s ok. I think it’s important to give yourself permission to feel how you feel. You may have a physical reaction. You might cry. Or become angry. Or worry constantly. And if you need to take a break from the media and the ‘what ifs’ to clear your head and feel better, it’s more than ok.

Over the weekend, we took that break. We participated in virtual Shabbat services with our clergy and other congregants through Facebook live. Dan made pancakes and waffles. We ordered in dinners from a few different places. We caught up on TV and Netflix and talked on the phone with family. We made a card for a little girl in our development who turned two. (a suggestion on the development FB page – to make cards for those stuck in the house on their birthdays) We facetimed with my Mom-mom and Aunt Sue, so they could join us for virtual Havdalah with our clergy and congregants on Sat. night. I cleaned out my office and am thrilled the clutter is gone. I organized our wine collection. And I took two very long walks around the development while listening to uplifting music – and had absolutely no trouble breathing.

Flying High

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A couple of weeks ago, we flew to LA to visit friends over the long Presidents’ Day weekend. Other than Ryan asking nonstop questions over a five-hour period (with many of those questions being during the two hours I attempted to sleep as it was late, and I was really tired), it was an easy flight. Ryan was calm and excited for the weekend ahead and did not complain once.

We’ve come a long way. Let’s rewind to when we first started flying with Ryan.

Patience is something Ryan always found difficult – particularly when he was younger. Whether it’s waiting in lines or sitting in traffic, we would brace ourselves for a meltdown when these situations arose. Over the years, it was common to hear Ryan say things like “Mommy, make the line go faster!” or “Mommy, why won’t the cars move! Let’s knock into them so they get out of the way!” in a loud, frustrated voice. To which I tried to remain calm and remind him repeatedly that we can’t control the lines or the traffic.

Because of this, we made the decision to wait before flying with Ryan. When the boys were almost eight, we decided it was finally time to brave air travel and take the boys to Disney over spring break. My parents offered to come with us, figuring four adults could handle whatever happened on that plane. We got seats in an entire row on both sides of the aisle, and the plan was for my parents to sit with Jordan, who had already flown by that point and would likely read a book or play on his DS the whole time, and for Dan and me to sit with Ryan.

While I spent the months leading up to the trip reading The Unofficial Guide to Disney World (a really valuable read – especially the sample schedules designed for different age groups!) and plotting what we would do at each park and in what order, Dan created a social story for Ryan.

Wikipedia definition of social stories:Social Stories were devised as a tool to help individuals on the autism spectrum better understand the nuances of interpersonal communication so that they could interact in an effective and appropriate manner.” They generally include pictures, since many people with autism like Ryan, are visual learners. In addition to explaining our schedule for the parks and including pictures of some of the rides and the hotel, Dan’s story walked Ryan through the entire airport experience, so he would be prepared for every step of the way. Ryan loved the story and read it over and over before the trip.

I also read articles written by other parents with children on the spectrum, who shared advice on traveling by plane.  A few suggested telling the crew your child has autism so they’re not surprised if a meltdown happens.

The day of our trip arrived, and Jordan woke up looking a little under the weather. No fever, though, so we made our way to the airport and got through check-in without a hitch. While waiting to board the plane, Dan tracked down the flight attendants and told them it was Ryan’s first flight, he has autism, and he wanted them to be aware. They were very understanding and let us board early.

Within seconds of the plane taking off, Ryan, who was sitting by the window, fell asleep. Dan and I looked at each other and smiled, took out our books, and read for the entire flight. What a luxury! The flight attendants stopped by our row several times during the flight to make sure Ryan was ok and seemed relieved he was sleeping. (And to make things even sweeter, Ryan also slept during the flight home!)

Meanwhile, across the aisle, Jordan began sneezing as soon as the plane took off. He proceeded to sneeze and blow his nose for the entire two hours and had a cold for the next few days. My poor parents on either side of him could not escape the germs and ended up with nasty colds, as well. I still tease them to this day that if they had taken the more ‘challenging’ child, they would have been healthy during that trip!

Dan and I were so excited with how well Ryan did on the plane that the following summer, we booked a trip to San Diego. We were a bit too confident. (“He’s a natural flyer! We can go anywhere!”) Here’s what we learned — Florida was a fluke. While Ryan also fell asleep at takeoff, 20 minutes later, he was awake and asked, “Are we almost there?” Sigh… we had more than 5 hours to go. His iPad died after an hour and he didn’t want to play with any of the toys he brought. It was a long flight with lots of whining, walking up and down the aisles and threatening no desserts with dinner if he couldn’t keep his voice down.

We’ve now flown as a family to Arizona three times, Florida again, South Carolina, and this past trip to LA. Some flights were easier than others. There was the first trip to AZ where I sat in a row with the boys and Dan had the flight to himself across the aisle. Ryan complained and threw mini tantrums the entire time because he was bored. (And I had a much needed margarita in hand at the pool 90 minutes after landing.) I claimed the lone aisle seat for the flight home, where Ryan slept a good chunk of the time next to Dan. By the second trip to AZ, Ryan was older and entertained himself with movies for most of the flight.

The trip to Florida in 2015 had us landing right after a storm. We were stuck on the runway for a while (cue the whining and mini tantrums) and then our luggage didn’t arrive on the carousel for a long time, as a branch fell on the road between the terminal and baggage claim. This challenged all of us and after a trying few hours sitting in baggage claim, I suggested the boys and I go to the hotel and Dan wait for our bags.

Our 2018 spring break trip home from AZ really put Ryan to the test. He has a fear of babies crying that started when he was four and my baby niece cried nonstop most of our Cape May trip. When Ryan was younger, if we couldn’t get him out of the area where a baby was screaming, he would start crying and it was often difficult to calm him down. On this particular flight, Dan was by the window, Ryan was sitting between us and I was on the aisle. Ryan was directly behind a baby who began to scream right before the plane took off. We were taxiing, and I saw the panic on his face.

Jordan was across the aisle, and quickly, I sprang into action – “Jordan, get up – switch with Ryan. Ryan, go sit across the aisle.”  Ryan would still be near the baby but not right behind the noise. People looked at us curiously as we switched seats during the ‘seat belts must be securely fastened’ period. The flight attendant made her way to us and I explained, “He has a fear of crying babies – we’ll be quick.” She already knew about his autism. Dan still tells the crew to this day. 

The move was the right one as the baby screamed for the better part of two hours. Ryan was still visibly nervous but did not lose his cool since there was now space between him and the baby. Once she fell asleep, we switched seats again. We were really proud of how he held it together.

The recent LA flight was a bonus in that we were in the first row of a section with lots of space between us and the wall, and we all had TV screens. (the plane was similar to the ones I take to Europe – it was huge) Ryan, who loves Google Earth and numbers, could watch the progression of our flight on his screen – visually, in miles, and in time left to destination. I myself prefer a good movie or a nap but was really glad it kept him interested for the better part of six hours!

What we’ve learned from all our flight experiences is while getting to a destination is not always easy and we have plenty of battle scars (i.e. stories) to share as a result, we love to travel with the boys and are willing to risk difficult plane rides to do that. This summer we are being very brave and planning a trip to Hawaii. There’s an overnight layover on the way there, but just a two-hour layover coming home. I would never have even entertained this trip as an option 3+ years ago, but the tantrums are much fewer these days and Ryan has definitely matured. We’ll see how it goes – I hope I’m not jinxing myself! And if I am, stay tuned for a good future blog post!