Two Voices

In today’s world, do you sometimes feel like you have two voices in your head? One is practical and grateful. It says things like:

  • Of course, we need to stay inside to keep ourselves and our families healthy. The death toll is at a scary all-time high.
  • Of course, we should have a slow transition back to life once the governors deem conditions safe enough to do so.
  • Of course, it’s not difficult to stay at home on our couches – we’re lucky if that’s the worst thing we’re faced with. Other people are putting their lives on the line working in stores and doctor’s offices and hospitals every day. We’re lucky to be healthy with our biggest challenge being managing kids, homeschool and work – other people are suffering badly with COVID-19. People are in the hospital and can’t see their loved ones. Others are at home sick, trying to take care of their kids. And many are struggling to pay their bills.
  • Of course, I’m grateful the boys are older, understand the situation and are handling it so well. It must be so difficult to have young kids during this crazy time. The other day when Ryan asked about timing for the end of the quarantine, I told him I had just heard on the news that for our county to open, the total number of cases need to be at an average of 30 per day, or a total of 415 new cases over a 14-day period. Jordan replied, “Good! We need to wait until it’s safe – our governor is smart!” The 16-year-old voice of reason.
  • Of course, I’m grateful to the teachers who quickly moved to an online curriculum, to our synagogue clergy who bring our congregation together virtually for Shabbat and Havdalah on the Friday and Saturday nights, and the many other organizations trying to keep everyone connected.
  • And of course, it’s nice to have this quiet time with our kids – dinner together, no running around to activities. I think one of the best things that came out of this is the boys ask each other about their days. It started out as a social skills assignment for Ryan and has turned into a regular dinnertime activity. And the weekends can be nice. Sometimes I like having nothing planned for the weekends. I’m honestly not sure where the time goes – TV, books, walks, online scrabble, reading endless articles about COVID-19, trying to ignore the endless articles about COVID-19, cleaning out closets, etc. I said to Dan the other day, “When we go back to whatever normal is, it will be a big adjustment to not have all this free time!”

And yet, there’s the other voice – the sad and anxious one – which says things like:

  • I want my !&?@#!#%&! life back soon! (summer would be nice – I really want to go on our planned vacation to Hawaii!) and wish there was a crystal ball to tell us when that point will be – mainly for Ryan who asks me about it every single day, multiple times. I hear him walking down the hall to my room at 7:45 every weekday morning and know the first words out of his mouth are going to be “Mom, let’s talk about summer. What’s going to happen?” Argh!!! And the endless discussions begin.
  • I miss family and friends – zoom and facetime are nice but not nearly the same as in person hugs and conversations. I worry about them getting sick and getting stuck alone at a hospital.  
  • I’m sad for my boys who only have a few years left of school and should be experiencing them with other kids. I’m sad they may not have a traditional summer vacation with camps, pools and the beach, because all too soon they’ll be in the working world and will never get to experience childhood summers again.
  • I’m anxious for Ryan who learns and focuses better face to face and has limited time to get ready for whatever direction his future takes him. Employability skills are a big part of his curriculum and you can only do so much virtually. He needs work experience. He needs his teachers in the room with him.
  • And I’m worried about what will happen when we finally go back to a new version of life and wave 2 of the virus hits.  

I saw a tweet that says, “The quarantine state of mind is having 3 solid days where you feel pretty well adjusted, followed by a sudden, unexpected dip into what we call “the hell zone.” Then the individual added below, “The hell zone is an anxious, semi-agitated state where you’re just sorta “off” for the whole day and time flows like you’re wading through chili – and your hell zone will NEVER synch up with other people’s hell zones and that’ll always make you feel weird and stressed out.” So true!

I’ve had insomnia on and off for most of my life. Last week, I found myself wide awake every night. I called the doctor on Friday to see if she could help. My doctor had left for the day, so this was another one at the practice whom I didn’t know.

We had a video chat and she asked, “Is there something that’s making you anxious?” I was about to burst out laughing but saw she was serious, looking at me earnestly.

“Umm…the state of the world?” I replied, somewhat sarcastically. With alerts to the latest news articles pinging phones all day long and regular local and national live updates, how can you not be anxious? There must be tons of people with insomnia out there.

“I meant,” she clarified, “Did anything new happen in your life recently?”

Our lives are essentially Groundhog Day, with no changes in sight. Status quo. We’re still healthy. We can pay the bills. We can talk to family and friends whenever we want. The kids can access school assignments and we can access work. There’s endless Netflix, Hulu and Prime shows to keep us busy. We have good neighbors and can take walks outside and wave to them from a distance.

“No,” I said. “Nothing new has happened. And I’m grateful for that.”

Flying High

Featured

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!

Mountain Climbing

Here we are at the end of January, and I’m sliding in a new year post just under the wire. New Year’s resolutions – we have the best intentions when making them. I always resolve to exercise more and eat less. And I’m generally good for it throughout the first month of the year.

This year, I decided to go a little deeper with my resolutions and really focus on something that’s been on my mind for a long time – planning for the boys’ futures. For several years, thinking beyond high school and the many things that must happen before June 2022 has been paralyzing. It seemed like a giant mountain to climb with no clear path on how to make it to the top. At two completely opposite ends of the scale, we have college planning for Jordan and figuring out what 18-21 and beyond looks like for Ryan. Every time I’ve started to think about either scenario, I’ve told myself we have time; let’s not stress about it yet. But the reality hit me at the beginning of sophomore year – we don’t have that much time anymore.

And so, I started the planning process in the Fall with the goal of doing as much as humanly possible in 2020, so the last two years of high school don’t get out of our control.

Jordan’s future was a little easier to begin researching. College is a common path. Many of our friends and family have done it with their kids, and Jordan has friends in college who can give advice. We started to discuss it in October. He has a high-level idea of what he wants to major in – “Something that combines music/performing arts and business” – was at least a starting place. Not that anyone needs to know at age 15 what they want to do in the future but having some general sense can help us figure out the right schools to consider. Jordan and I looked at majoringinmusic.com (my mom’s friend owns this business) and checked out curriculums online of schools recommended to us that we thought might be good options. We narrowed it down to 10 or so to visit next year.

Of course, now that Jordan has taken the PSATs, we’re getting multiple college brochures in the mail daily, and Jordan’s email is also blasted every day from universities, so the list could change. I haven’t heard of half these schools. Last week, Dan said he was impressed we got one from Brown.

“Jordan, wow – Brown wants you,” Dan said. To which Jordan sarcastically replied, “Brown wants everyone – it’s called post PSAT mass mailing.”

Like many parents, our biggest issue and stressor will be paying for it. College costs are insane. Even the state schools, which are supposed to be affordable, have skyrocketed since my college years. A ‘paying for college’ workshop is offered a couple times a year in our area – we’d gotten flyers in the mail and it looked intriguing, but it was always scheduled for a date when I was out of town. Finally, I saw there was one in October Dan and I could both attend. We learned some useful tips and set up an appointment with a college planning advisor following this.

I spent the beginning of January getting all the paperwork together, so the advisor can guide us on the best path forward given Jordan’s potential school choices, grades, and potential SAT scores, and we now have a couple of appointments set up through the Spring. I’m still not sure how to actually finance this, but at least there will be someone helping us throughout the process. Yes, there are a million other next steps like SAT prep, college visits, college applications, etc., etc., but those are things that can start during the summer.

Ryan’s future is a bit more complicated. He has the option to stay at school until he is 21, doing work-based learning/employability skills type programs. There are also post-secondary programs for students with developmental disabilities like THINK College, and there are certificate programs and vocational training/tech schools which could be options. Just as important, Ryan also needs to develop independence skills, so he can ultimately live on his own. Many things to think about, so little time. How do we even begin planning for all of this?

Like most kids on the autism spectrum, Ryan has an IEP (Individualized Education Program). The IEP includes academic, social, and employability skills goals. This year, as part of his curriculum, Ryan has been spending several hours a week working at school (e.g. school store) and in the community (Nick’s Pizza, a local synagogue, etc.). The school partners with several local businesses where the students with developmental disabilities work and learn basic working skills and each quarter he goes to a different one. It’s great he’s getting training on following directions and building these skills – everyone must start somewhere and there’s no shame in cleaning tables or pushing grocery carts. However, what we really wanted was for the school to focus on Ryan as an individual. Ryan has a lot of strengths, talents and interests which people are unaware of because he can be quiet outside the house – and if tapped into, he could really reach his full potential.

First, Ryan has an exceptional memory – he remembers things from years ago and is particularly interested in addresses – he knows where everyone in his world lives as well as the addresses of all the doctors, business and vacation spots we frequent, and he can locate all of this on Google Earth. A typical conversation:

Ryan: “Mom, what’s so and so’s address?”

Me: “I don’t remember. But I bet you know.”

Ryan – “Tell me. I want to hear you say it.”

Me – Sigh, “Is it… [making this up] 825 Moreland Ave in Horsham?”

Ryan – “Don’t you mean 815 W. Moreland Ave, Horsham, PA 19044?”

He is also an amazing photographer and captures images in a beautiful way. He enjoys taking pictures and sharing them on social media. He’s good with computers – once he learns something new, he can easily navigate it. He loves animals (outside of barking dogs – the sound hurts his ears) and is especially gentle with cats. Ryan also enjoys cooking. That’s a lot of strengths and interests. So… how do we take one or more of these things and capitalize on them?

In the Fall, I had coffee with a mom in our school district whose son is an adult with a disability, successfully navigating the working world. She shared a lot of useful advice; the top two things I took away to help us immediately in making decisions were: 1) Keep Ryan in school until 21 – he walks at graduation and the school then holds his diploma for three years while he does work-based learning and potentially a vocational or higher education program at the same time; and 2) Create a vision statement with Ryan for his future and share it with the school so we can collaborate with them on how to get there. This will ensure the 18-21 years is time well spent.

I then spoke with another mom in the area who also has an adult son with a disability, and she said the plan that stems from the vision statement should be organized into three categories and the school should provide services to help us with each: employability, independent living, and further education. What do we want for Ryan in each of these areas? What is realistic? What can stretch him? She also said to make sure employability is specific – we’ll want something meaningful and close to full-time because the school will likely consider it a success if he’s only working at age 21 eight hours a week. Hearing that gave me some palpitations.

Over winter break and into early January, I spent a lot of time on this – I looked at some sample vision statements for students transitioning to adulthood, thought about what was important to us as parents for Ryan, and of course, talked to Ryan.

Ryan: “I want a job that I like. I might want to go to college. I want to live in an apartment by myself.”

Dan and me: Ryan needs a job that uses his strengths and should definitely work as close to full time as possible (nightmare scenario: adult Ryan on the couch playing video games and watching YouTube on his iPad all day). He should have the option for some sort of post-secondary education, tbd. And we really want him to have friendships.

And so, we ended up with this vision statement: Ryan will obtain meaningful full-time (at least 30 hours a week) competitive employment in a job that uses his strengths and appeals to his interests. He will pursue the post-secondary educational opportunities (eg THINK college). He anticipates living independently (in his own apartment with supports and/or with a roommate). He will have the opportunity to develop friendships outside of the family. I also took a video of Ryan saying this in his own words.

The plan then broke down how he could get there in each of the three categories – and where I thought the school could help vs what we needed to do at home.

Under employability, I included the following headings with some ideas under each:

  • What are his strengths and interests?
  • Given his strengths and interests, what are some potential employment ideas?
  • How do we prepare him to be successful for any of these jobs above?

Under independent living, I wrote:

  • What skills and experience does Ryan need to live independently?
  • How do we increase his skills in these areas?

And under further education:

  • What education does Ryan need to be successful in his career and to prepare him to live independently?

When school resumed in January, I emailed the vision statement, plan and video to his autistic support teacher, supervisor and the teacher who manages the work-based learning program and transitions, and suggested we discuss it at the upcoming IEP meeting. I honestly was not sure what the response would be, as I was pushing for Ryan to do some things outside of the traditional program.

His teacher loved it and said after reading it, she has high expectations for him and really wants to focus on more independence. She worked with Ryan to turn it into slides so was easier for him to follow and added some ideas on courses he can take next year and content to build into his curriculum. We went through it at his IEP and she gave Dan and me very helpful tips on things we can do at home to supplement. And, an hour after the IEP, she emailed to tell us Ryan had started an Instagram account where he will attend in-school events, take photos and share. (@cardinal_domain)

The work-based learning teacher said she thought it was great, too. Ryan was initially slated to work at a local restaurant when he rotates off his current job in April; however, we’re now looking into a pet store and/or a coffee shop where he can take pictures and do their social media. We also talked about him potentially attending a tech school for pet care or culinary arts during his senior year as part of his curriculum.

It feels good to finally be organized and not feel as paralyzed anymore when thinking about the boys’ futures. Of course, having the vision statement and plan and identifying a handful of colleges and a financial planner are only very small first steps. But it’s like the title of my blog – tiny giant steps. We took a few this month. The mountain is still there, but there’s a path to follow as we continue the journey and take the rest.

Home Improvements

I don’t remember when Ryan first became interested in home improvements, and specifically, the many ways we can improve our home. It seems like for the past couple of years, he has regularly asked about remodeling. “When can we remodel [insert room]?” has been a typical question.  ‘We’ – like he is part of the decision and the funding.

I had wanted to remodel our kitchen for a while, but other expenses got in the way. We finally decided to focus on it last summer – but decided to do cosmetic updates rather than a full remodel, as we still liked our cabinets and didn’t want to spend a fortune. My goal was to finish before Thanksgiving. And so we began with appliance shopping.

Appliance adventures

I ordered a dishwasher, microwave, stove and refrigerator from Lowes. The fridge was the hardest part because of the small space into which it had to fit, but the salesperson seemed confident the size they had would work based on my measurements.

The dishwasher and microwave came on a Friday in great condition and were promptly installed.  I was given a timeframe of between 11 and 2 for the stove and fridge delivery the following week and planned to clean out the old fridge right before 11 and pack our food in coolers full of ice in case the new fridge arrived closer to 2pm. At 10:30 I got a call they were a few minutes away. Of course this would be the first time a delivery ever came early. I quickly grabbed everything in the fridge and freezer and piled it on our dining room table just in time.

One of the delivery men came in with a cart to remove the old fridge. As he pulled it out, he said “I don’t think the new one is going to fit in here. Did you measure?”

It turned out I was off by about an inch. He said he’d take the new one back and I should call to order a smaller size. Meanwhile, the other delivery man had unloaded the new stove and noticed a big dent on the side. He asked if I still wanted it. Umm… you can guess what the answer was…and so we scheduled a reorder for the following week.

I then put all the food back in the old fridge. When he arrived home from school, Ryan was visibly disappointed we did not have new appliances. Later, when I called Lowes to find a smaller option, it turned out their next size down was too small, and I ended up getting a refund from them and ordering the new one from Home Depot.

The following week, the stove arrived without dents, so we now had three of the four appliances set. A few days later, it was time for the Home Depot fridge delivery, and I once again took all the food out and packed it in ice in various coolers on my dining room table. When the new fridge arrived and was taken off the truck, the men called me outside. “There’s a dent in the back,” one of them said, “And it’s pushing into the area where air circulates, so it’s up to you whether you want to send this back.”

Really? It was deja vu, saying goodbye to the new appliance and putting the food back in the old fridge. Home Depot said they could come the following Friday. I promptly texted Dan and told him it was his turn to wait for it and deal with the ‘food in and out of fridge’ annoyance. (Of course, that fridge arrived in perfect condition and Dan texted me about how easy the whole process was.) Ryan was beyond thrilled we now had all new appliances.

With this part of the kitchen complete, we moved on to the cosmetic updates.

The Kitchen Floor

Later in the summer, Dan and I went to pick out floor tile. I texted Ryan from the tile store needing a picture of our cabinets.

“Why do you want the picture?” he texted back

“I need to pick out tile that would match it nicely.”

“Can you text me pictures of the options?” he asked. He cracks me up.

We’d be out of our kitchen for three days during the floor installation in mid-October. The night before it was set to begin, we took everything out of the kitchen that we could possibly need – nonperishables, some dishes, medicines, coffee maker, toaster oven, soap and sponges, etc.). All of this was piled on the dining room table or in stacking bins next to it. The next day, the men working on the floor moved our fridge and oven into the dining room/family room area, as well. I worked in the basement and cringed all day with the banging noise.

Getting around that jam-packed area was a little like playing Tetris. I joked to Ryan we should leave the room like that for Thanksgiving. The sofa was in the middle with chairs pushed against it. Ryan loved it and sat on the couch, excitedly talking about how funny it was to be crammed in that room with everything on top of us. Meanwhile, the rest of us couldn’t find anything in the mess and we were all anxious to eat back at home by the last night.

Countertops and a Sink

The following Thursday, the countertops and sink were scheduled to be installed. When I came home Wednesday evening after being away for three days, we had to move everything off our kitchen counter and into the dining room. Ryan was on it the second I walked in the door. “Let’s go, Mom. I want to start moving our stuff!” I was tired and thought we could wait until the next morning, but he enthusiastically started moving things. He also kept asking if our new sink would have a “pull-down faucet like Sue has.” I wasn’t sure what he meant.

The next morning, the plumber, who was uninstalling our current faucet and garbage disposal, asked if we had selected a new faucet. I had assumed the faucet came with the sink, but after checking with the granite company, I realized it did not. Luckily, the plumber had one with him, which he said was high quality and he’d install it the following morning when he came back to hook up everything.

“Make sure it’s a pull-down faucet,” Ryan said later when I told him. “It will be whatever he has,” I replied, “I have no time to faucet shop tonight.”

The granite installation was easy – only an hour (I went downstairs for an hour conference call and came up afterwards to check on the job and it was finished) – and we had to let it dry overnight. The next morning, the plumber hooked everything back up and showed me the faucet – which pulled off and served as a hose to clean the sink. (as opposed to our old one, which had a separate attachment for that).

When Ryan came home, he had a big smile on his face as he looked at the countertops and sink. “Mom! It’s a pull-down faucet!” he exclaimed! “Thank you!” Whew! Since then, Ryan has washed his own dishes and rinsed away all food in the sink using ‘his’ faucet. He is on a mission to keep the sink clean.

(I should add Dan and Jordan were also both very complimentary of the kitchen, but it was nowhere near the level of excitement Ryan showed.)

The final touch – backsplash installation

The backsplash was scheduled for the first week in November, and I booked the painter for the following week. This would get us to my Thanksgiving deadline.

Monday night, I came home from a marathon day trip to NY with Ryan waiting for me, excited to clean off the countertops so the backsplash could be installed the next day. I was once again dead tired and suggested we just do it in the morning. (Note to self: stop scheduling these installations for the day after business trips!)

“But then it’ll be rushed, or you’ll do it without me. I’m ready to do it now,” he said.

Sigh…

The good news: Ryan was very helpful and probably took the majority of our stuff into the dining room. The bad news: Ryan dropped part of our Keurig and made a mess on the dining room floor that we had to clean. Luckily the Keurig still worked.

On to Tuesday morning…

The backsplash crew was due to arrive between 8:30 and 9. When no one had arrived by 9:15, I called the store. Apparently, they had left a message the week before on some other person’s phone that the backsplash was delayed and would not be ready for another two weeks. Argh!

When Ryan came home from school and heard the news, he came running down to my office for an update on timing.

 “How are you feeling?” he asked

 “Tired of moving things in and out of the kitchen,” I replied, laughing.

“Don’t worry, Mom,” he said, “I’ll help you do it.”

He did. And the installation went off without a hitch.

Table and Chairs

Unrelated to the renovation project but in the middle of everything, I put in a request to get our kitchen chairs – two of which had broken seats and one a broken leg – repaired. I also requested the table be touched up. When we got the table several years ago, we bought the lifetime warranty insurance policy. Every six months or so, I call for a touch up as the paint tends to rub off. For some reason, Raymour & Flanigan put this claim in as two separate requests, and I got a call that my kitchen table top would be ready for delivery the same week as the granite. I called them back and said I hadn’t ordered a table top. All I wanted was a touch up. Apparently, they had messed up the order and there was now a table top in stock. They suggested just taking it. Because it was two requests, the table top was scheduled to arrive in the morning and the chair repair guy in the afternoon.

Three men and a giant truck arrived first thing in the morning. “Where’s the table that needs assembly?” one of the men asked me.

I was confused. “My table is already assembled. “Where’s the new table top?”

The men were also confused. “We don’t have a table top. We were told we needed to assemble your table.”

Argh. One of the men called the service department to let them know about the mix up and 10 minutes later, I had a new appointment for a table top delivery I didn’t need.

That afternoon, the repair man who typically touches up my table and chairs came and quickly fixed the chairs.

I told him about the earlier mix up and asked, “Is there any way you can just fix my table now and I can cancel the table top order?”

“I wish I could,” he said, “but my order form says I can only work on the chairs.”

“You have the tool right there. It will take 5 minutes,” I persisted.

“Sorry, I’ll get in trouble,” he said. Seriously?

The Friday before Thanksgiving, the men arrived with what I thought would be the new table top. However, once again thought they were assembling a table in my house and did not have a top in their truck. (seriously, you can’t make this stuff up!)

Third time’s a charm, though – they came on Monday with an entire table – this time the wrong order worked in our favor – and gave us the whole thing. So as an added bonus, we had a new table for Thanksgiving!

Less than a day after the kitchen was complete and all decorated, Ryan asked, “What room can we renovate now?”

From Power Outages to Wine – Adventures of a Long Friday

A few years ago, we went through a period where we had regular storms resulting in power outages for days on end. The longest was five days during an ice storm. Not fun. Because of this, Dan decided we should have multiple flashlights and batteries easily accessible. And for a while, there were many flashlights all over the house in different sizes and quality, including one that could be worn around the head.

It’s been a couple of years since we lost power for an extended timeframe, and we gradually forgot about/got complacent with the flashlights. Fast forward to Halloween night. We were all a little hyper from gorging on chocolate and went to bed later than usual. I fell asleep to the sound of heavy rain, but about an hour later, a blaring noise came from my iPhone 4.

(Yes – an iPhone 4. I have an older alarm clock, which I bought as a charger for my iPhone 4 back in the day. The iTunes on it still works, and the ancient phone wakes me with music in the mornings.)

“Mdjfhreiss” I mumbled, trying to find the source of the noise. Annoyed at being woken up, I grabbed the phone and threw it on the floor to silence it, too deep into my sleep to register it was a tornado warning.

Shortly after this, I heard Dan mumbling, “This is really bad. The winds… we need to move downstairs… tornado warning.”

“What?” I was up in seconds. The winds sounded awful and I thought the window might break. “Why didn’t you wake me?”

I then noticed the power was out.

“I thought you wanted to sleep,” he said.

“Not if there’s a potential tornado coming!” I exclaimed.

We woke our grumpy children, grabbed the flashlight magnet on the fridge, and forced them to move to the basement, where Ryan proceeded to complain nonstop until the warning ended.

Then it was midnight, and I was suddenly starving. It took another hour to fall back to sleep, before which I set my current iPhone alarm, since the clock no longer worked.

When my alarm went off in what seemed like minutes later, we realized we still didn’t have power, it was pitch black, and we couldn’t find any other flashlight. After some digging, we located two – with dead batteries – and of course then could not find any replacement batteries. “I don’t understand how we were swimming in working flashlights a few years ago,” I muttered. “Where did they go?” (Of course we have iPhone flashlights, but I wanted to save the power for as long as possible.)

With a one bar cell signal, we saw on the school district’s Facebook page that school was closed because of power outages and road conditions throughout the township. Ugh. Inconvenient because I was leaving later that day for a girls’ weekend in DC. I wasn’t finished packing and had planned to do that, get gas, and go to an ATM in the hour after the kids leave for school and before I start work. And Dan had to get to work early. (Separately, Dan and Ryan were going to visit his parents in Maryland the next day and Jordan would be sleeping at Marni and Dan’s – my sister and brother-in-law’s – house.)

I texted my parents, who said we could come over whenever we wanted. We heard 2400 people were without power and I suggested the boys pack for an extra night out in case ours was not restored later.

Sharing our one working flashlight and phones as needed, we all packed and were on our way by 7:50 – Dan to work and the boys and I to Willow Grove, six miles away. I was planning to stop for gas and money first; the tank was very low. (Side note: I realize anyone who lives out of the area will not know the streets I’m describing in the following paragraphs. I tried to write it without street names and it didn’t flow well. The main point here is the amount of time it took us to get to a house 6 miles/15 minutes away!)

As I turned out of our development, I saw Susquehanna Rd was closed directly to the left. I made a right and went seven minutes out of our way – around the corner to Tennis Ave., through traffic on Norristown Rd, to Butler Pike and finally, back on Susquehanna, a block further than our original turn. We slowly crept down Susquehanna in more rush hour traffic and made it to the Wells Fargo. Turning in, I quickly breaked in front of trucks and a clean-up crew working on digging out the large branches and debris throughout the bank’s parking lot. There was nowhere to drive and the bank was obviously closed. I channeled my inner Dan, saying to Jordan, “This is where a three-point turn comes in handy.” (Dan loves to talk about his three-point turn skills.)

At this time, we realized we’d forgotten Ryan’s medicines and decided to go back home and find a gas station in the other direction. We took the scenic route to avoid the original road closure and fumbled in the dark house trying to locate the right meds and put them in baggies. Then we were back in the car. I drove to another ATM on Norristown Rd, which was also without power, but did see a gas station with a car in it across the street. As I turned in, I realized all the machines were down. Sigh. For some reason the lone car was just sitting there, perhaps willing the pump to turn on.

Without gas or money, I decided we should just go directly to my parents’ house, since they had gotten up earlier and were waiting to go out to eat. It was now 8:30.

Back on Butler Pike to Susquehanna Rd., again, Ryan said, “I feel like we just did this.” Yes, we were driving in circles. It was a real ‘Hey kids, there’s Big Ben’ moment. (Hey, kids, there’s Susquehanna Rd!)

We made it all the way down Susquehanna to Fitzwatertown Rd, but when I went to turn left, I saw the road was closed. @#$%&! I quickly veered right and went all the way back to Twining and then had a brainstorm.

“Jord, can we just cut through Burn Brae (his day camp – which is off Twining Rd.) to get to the back roads to Mom-mom and Pop-pop’s? You can direct me there?” I always get lost on those back roads.

“We can, but maybe just take Twining all the way. It’s more straightforward,” he said.

“Nah, I want to get there already and avoid more traffic. Let’s try this.” We were going on an hour of driving by this point.

I turned onto the camp road, passing a large fallen branch (which should have been a clue to turn back) and then stopped suddenly as I realized we were stuck in front of many, many huge branches. Somehow, we were boxed in and I wasn’t sure the three-point turn would do it this time without messing up the car.

“@#$%&” I shouted a bunch of other expletives, which Ryan happily repeated from the backseat, giggling. “I don’t know if we can get out of here.” I was so tired and needed coffee desperately.

“Oh Mom,” Jordan said, feeling badly for me.

I took a deep yoga breath and backed onto the lawn next to us, did some careful three-point turns and, finally facing the street, accelerated over the debris. “Nice!” Jordan said. “I’m proud of our little CX5. Who knew it could be an elite off-road vehicle.”

Back on Twining road to Moreland, I saw an open gas station down the street (Oh joy!) and pulled in, parking in front of a pump that – of course – said out of service.

“Mom, this trip is like driving to Aunt Anna’s (in South Jersey) – there and back,” Jordan joked. We’d been in the car almost an hour and a half at this point.

“You should write a blog about this,” Ryan said

“Ha! Maybe one day when it’s a distant memory,” I replied.

A few minutes later, when a gas pump became available, I got out, breathed the fresh air, and just began laughing out loud at the craziness of the morning. It was only 9:10 and it felt like it should be 3:00. Ten minutes after that, we finally arrived at my parents’ house.

They greeted us and my mom, seeing I was clearly fried, asked “Are you sure you still want to go to DC? You had such an exhausting morning.”

Hmmm let me think about it. Stay here and deal with what could be an all weekend outage or go to a brownstone in Georgetown with my friends where there would be wine and laughter waiting. Really tough call.

Meanwhile, the day passed by and several hours later I was en route to 30th Street station. (and power was back on at home!) My college roommate, Doreen, and I had decided it would be fun to take the train together to DC. She’d get on in NY and I would catch the same train in Philly.

While on my way, she texted that our 2:17 pm train was two hours delayed. I suggested she find a different train and I would change my ticket when I got to the station.

I waited in line for 20 minutes, and when I got to the front was told they couldn’t switch my ticket because I had purchased it with points. Argh! I had to wait another 20 minutes on hold with Amtrak Rewards to make the switch. Finally, I was set.

I got on the train at 2:34, found Doreen, and we spent the next two hours to DC (ironically, not much longer than the time it took me to get to my parents’ house earlier that day) catching up. We were grateful we’d gotten the new train as the alerts for our original train said it didn’t leave Philly till 5:00!

Shortly after 5:00, we were in a beautiful brownstone catching up – wine in hands and laughing till we cried – with our friends, Melanie and Nguyen, the last 17 hours quickly becoming a distant memory.

Beating the Clock

Today we start week four of the school year, and I still cannot believe Jordan and Ryan are sophomores. It seems so grown up and serves as a reminder the clock is ticking and in less than three years, the boys will be actual adults. My goal this year is to have them take a step toward adulthood by getting themselves out of bed in the morning.It sounds simple, right? However, if you look at my June Then and Now blog post, you’ll see how frustrating the whole wake up routine was.

One day last May, I was complaining to my friend, Nichola, about how much I despise getting up at 5:30. She told me she gets up much later – sometimes 8:00 am – and I asked, “How is that even possible? That’s practically lunchtime given when I wake up!’ 

She said her older two get themselves up and on the middle school bus themselves (her husband is there getting ready for work at that time if they need anything), and she wakes up with her youngest, who is in elementary school.

“They actually make the bus without 25 reminders to get out of bed and hurry up?”

She said they know if they miss the bus, they will be driven late, and they don’t want to miss school and have to make up the work.

Hmmm… I could maybe see the missing class bit working for Jordan, where the being driven consequence would be an incentive for Ryan (he is all about the bus), but I was not sure it would practically work. Meaning, could I follow through and really let them keep sleeping and be late?

The next day, I told the boys how impressed I was that Nichola’s kids got up on their own and said I’d like to try that in September. It felt too late in the school year to start anything new. Jordan didn’t seem very interested, but Ryan was fascinated. “So what happens if they miss the bus?” he kept asking.

Then, “How ‘bout we don’t do that?” I hate my alarm clock – it’s too loud.”

And, when I persisted, saying we would indeed do that, “How ‘bout I miss the bus and just skip school all day? I’d rather stay home and relax anyway.”

“That’s called truancy, and if it happens over and over, Daddy and I could go to jail,” I told him.

His reply – “Well, then I can just live with Sue at the Plaza Apartments in Jenkintown and uber to high school.”

“Sure, Ry,” I thought. “There are so many things wrong with that response, so we’re not going to even justify it with an answer.” 

Summer came, and we woke the boys, except it was later and therefore, much easier. (I do love summer and the extra sleep!) When mid-August rolled around, I ordered two new alarm clocks. The ones they currently owned and never used were very basic, and I wanted them to have a choice of wake-up sounds to make the new routine a little more palatable.

“I don’t want a new clock. I have one,” Ryan said when it arrived.

“And you complained about the noise on that one. Now you have five options so you can pick the sound that doesn’t hurt your ears.” 

The night before the first day, I asked them, “What time are you getting up tomorrow?”

Ryan said 6:00, so I helped him set his alarm. His bus was scheduled to come 6:50, which is 15 minutes later than last year’s bus, but for some reason, he complained about this. In any case, I set my alarm for 5:45 because I did not trust he would wake up on his own.

Jordan said, “Wake me at 6:20.”

“I’m not waking you, remember? Set your alarm,” I told him.

“Oh…this is really a thing?” he asked. I’m not sure where he got the idea this would just go away – I mentioned it regularly throughout the summer and we had the grand presentation of the new clocks a couple weeks ago.

Day 1 – 6:00 am on the dot – I heard Ryan get out of bed. Ten minutes later, he came in my room.

“I’m ready!” he exclaimed, proudly.

And at 6:20 am, Jordan was out of bed and in the bathroom. Clearly a first day fluke, right?

Day 2 – Ryan also was up and dressed right away. Jordan set his alarm for 6:09 (very random, I know) and promptly went back to bed.

“Jordan – your alarm went off – get up!” I called. (So much for letting him be late for school… but in my defense, it was the second day. I can’t let him be late this early in the year.)

“Mgkdjfht,” he mumbled.

“Jordan!”

“I don’t need to get up till 6:20,” he said more coherently, when he got out of bed 10 minutes later.

Then why did you set it for 6:09?”

“I just need time in my bed to slowly wake up.”

That was his strategy and it worked for him, while Ryan wanted to get out of bed right away. He soon decided he preferred his phone alarm to the clock.

Halfway into week two, I was confident I did not need to get up at 5:45 and decided to start pushing my clock time back. The plan was working – I couldn’t believe they were getting up on their own. Wednesday night, I set my alarm for 6:15 am. At 6:10 am on Thursday, Ryan came running in my room.

“Mommy, why aren’t you up?” he asked, clearly bothered by the fact I was still asleep. He began turning on lights. Argh!

“You don’t need me up the whole time you’re getting ready,” I mumbled, still not awake. “I’ll come down while you finish breakfast and wait with you for the bus.”

“No, I want you up!” he exclaimed. “I like when you’re getting dressed when I’m getting dressed, and when you make your bed while I make my bed.”

“But we’re doing those things separately,” I said. “Maybe you can pretend I’m getting dressed while you’re getting dressed.”

“Mommy, no, I don’t want to pretend. I like knowing we’re doing the same thing and then you’re ready and can sit with me while I eat breakfast and wait with me for the bus. I like when you’re there.”

Hmmm… I had anticipated the boys potentially sleeping through the alarms and going back to old habits. I hadn’t counted on Ryan actually taking responsibility for waking up on his own but still wanting me around for company throughout the process. That’s kind of sweet.

While the initial benefit of doing this was for me to get more sleep, the overall goal was to make them more independent, which is actually happening. Ryan and Jordan continued to be responsible for their alarms throughout week 3 when I was away. Dan told me when I came home on Friday, “The boys didn’t even need me to get them up. They were fabulous.” As I think again about that ticking clock and the three short years left of school, I know I should take advantage of whatever time they want to spend with me. Even if it’s at 6:00 in the morning!

The Right Fit

What a difference a year makes. Last August, I wrote the blog, The Paradox of Summer, describing our difficulty over the years finding the right camp for Ryan. The blog was then published by the New York Jewish Week (The New Normal – blogging disability), and a number of people, including a Rabbi in Israel, reached out to me after that with camp suggestions. I was very appreciative for all the advice but knew those camps would not suit Ryan. However, the messages got me thinking that it had been six years since we’d given up on camps and maybe there were new options now available.

I began my search in February. We only needed something for a few weeks, since the first five weeks of summer Ryan participates in the Extended School Year (ESY) program at the high school and we usually go away at the end of August. I googled camps in the Philadelphia area for special needs teens and stumbled upon Carousel Farm in Warminster, PA. Their summer program was for teens and young adults ages 14-21 with learning disabilities and mild autism spectrum disorders. I emailed them and got in touch with D, who worked in the office. He said the camp day is split between typical camp activities, such as sports, swimming, art, music, and horseback riding, and employment skills, where campers can work in the camp store, on the farm (with sheep, goats, chickens, a donkey, and a pony), in food services, or in the garden. There is a big focus on social skills throughout the day, and the majority of the campers are verbal and mostly independent.

It sounded amazing and we went to visit in early April. I learned D’s parents. L and M, owned Carousel Farm. L was the main counselor, M was the music counselor, and they have a daughter who runs an overnight camp for young adults over 18. The camp was small enough where Ryan would not be overwhelmed but seemed to have enough activities to keep him busy. We saw an indoor video game area, a mini zip line, the farm, the horseback riding and sports areas, and the pool. As an added bonus, we learned the camp offered hot lunches. (For some reason, my kids do not like sandwiches so that has always been a challenge with camps.)

Like with anything new, Ryan was hesitant to commit to going there. “I’ll do it for one week,” he said reluctantly.

“Three,” I countered. “One will not get you used to camp and I’d rather you spend time there than sit on the couch indoors.

“Fine,” he said. “I’ll do 2.” I smiled. Two weeks was my actual goal, and so we had a deal.

Ryan and I went to visit camp the Friday before he would start so he could meet his counselors and the other campers. L was warm and welcoming and we were part of their morning meeting within minutes of arriving. They were working on social skills and the kids had to talk about their weekend plans and ask each other questions. The room was loud and Ryan looked a little overwhelmed. But surprisingly, he did answer questions people asked him and asked L a few questions of his own.

L gave us a copy of the schedule, which helped Ryan relax immensely now that he knew when each activity would happen. We then had the chance to meet his driver, who was also the horseback riding instructor. She showed Ryan the van he would be in during his rides to camp, which also helped get him in the right frame of mind, as transportation to and from school is a big source of anxiety for Ryan. (He likes to know well in advance what bus he’s on, who is driving it, and when it will arrive.)

Despite the successful visit, Ryan being Ryan complained the entire weekend leading up to camp. “I don’t want to go.” “How ‘bout I just stay home and relax.”

“You’ll love it,” we kept saying. “It’s going to be so much fun.” (But I silently prayed it would be a good experience for Ryan. I knew there was no way he would go to camp after this if it didn’t work out.)

Monday came. I wondered all day how Ryan was doing. When he arrived home at 4:30, I asked a lot of questions, trying unsuccessfully to get details. Here’s what I got out of him: “It was good.” “The ride home was too long.” “I did art.”

I emailed L for more info. “He is just adorable! He had a great time. We adore him. He participates in everything. He’s a doll.”

Wow! I told Ryan how much L and the others liked him and asked again what he did. He said he worked in the garden and swam and complained about the long ride again. I suggested he bring earbuds to listen to music during future car rides.

The next day he did just that and did not complain about the ride. He told me he worked at the farm and enjoyed it. Wednesday, he had the chance to ride the horse. Swimming was his favorite overall activity, and he was not happy the one day it rained and swim was cancelled.

Ryan asked me if I knew the schedule for next week. I emailed L, who said it would stay the same and she added that he seemed to like the kids in his group. “He has settled in beautifully and goes with the flow,” she said.

I showed that to Dan, and we both laughed about how she probably got Ryan confused with another camper. Go with the flow is not a phrase that comes to mind when we describe Ryan.

Over the weekend, Ryan said, “Only five more days of camp and then I can relax!”

“Ry! You like camp. And everyone loves you.” I said.

He smiled. “Well, at least I have three weeks after camp ends to relax.”

L told me to keep an eye on their Facebook page as there were some cute photos of Ryan going up soon. The pictures went up on Monday of the second week. The very first one was a close up of Ryan, and there were six more of him included in the post. My favorite was Ryan feeding a goat. He looked so happy.

Week 2 was all about the weather and Ryan’s concern that the rain would impact swim time.

“Mommy, when will the rain start?” he asked each night. “And when will it stop?” If he didn’t like the one weather site that had the hour by hour forecast, he had me pull up another.

“I don’t want it to rain during camp tomorrow. Tell the rain to wait until camp’s over,” he complained. Some things never change – see Weathering the Storm. Luckily the rain cooperated with Ryan’s schedule.

When his driver dropped him off on Friday, she called out to me, “Ryan told me he’s coming back next summer for two weeks. Looking forward to seeing him then!” I couldn’t believe Ryan had independently told people he would return.

We started the camp search when Ryan was six and after nine years, we finally found the right fit – activities he will willingly do, and most importantly, counselors and a few peers who got to know him and with whom he made connections. As Ryan looks forward to relaxing the next few weeks before school starts, I am thrilled to have a place where he can comfortably return next summer.

Then and Now

The countdown has begun. Jordan informed me there are 11 actual days of school left for him, including finals. Apparently, if they do not have a final, they can stay home that day.

The year seemed endless back in September, but once we got into a routine, it actually flew by. I started thinking about how many things had changed since my Welcome to High School blog post, along with what had not changed at all, and decided to dedicate this last blog of the 2018-2019 school year to ‘then vs now.’

Waking up

Then

Getting up at 5:30 am seemed inhumane. We were exhausted all the time, and it was impossible to get the kids going at that hour. I was catching colds constantly from lack of sleep. People told us we would get used to it before long.

Now

Waking up at 5:30 is still ridiculous. Dan and I do manage to go to bed earlier, and I don’t get as many colds these days, but mornings are remain a mad rush. Here’s an example from two weeks ago:

Me: “Ryan, it’s 6:15! You’re still in bed and we woke you 45 minutes ago. The bus is coming in 15 minutes!”

Ryan: “I don’t want to get up. How ‘bout I just skip school today? I hate Mondays.

Dan: “How ‘bout we drive you to school the rest of the year?” (Ryan loves taking the bus.)

Ryan: “Never mind, I’m up.”

Me: “Jordan it’s 6:00. Get out of bed.”

Jordan: “mfjdsbedhx” (incoherent mumbling)

Me: “Jordan it’s 6:15. Wake up!”

Jordan: “I’m up.”

Me: “You are not up. Your eyes are barely open. Get up and start moving.”

Jordan: “Okay, okay.”

(5 min later) Me: “Jordan! You’re still sleeping!”

Jordan: “No I’m not. Mfjfjd…”

Dan: “JORDAN, GET UP NOW!”

Jordan “Why are you yelling? This is the first time you told me to wake up!”

I mean, does he think this is a picnic for me? I am hardly a morning person.

The only one who actually seems to have adjusted to waking up in the 5s is Dan. Even when the boys had school closing days, he voluntarily and happily continued to get up that early. Like it’s something he is okay doing for the long-term. I have said more than once that none of us is waking up in the 5s this summer. 6:30 is much more reasonable. Whenever Dan wakes up, he’s kind of loud and it automatically wakes me, too, so we need to all embrace this no 5s thing in order for it to work. Are you reading this, Dan? Mom needs a break from the 5s!

Homework

Then

I was very stressed trying to figure out what Ryan had to do each night given the multiple places we needed to search (Schoology, Google Chrome, 10 folders, etc.) to get answers. There also was quite a bit more work than in middle school, which was an adjustment. Jordan had a rude awakening when he realized – after three years of getting his homework done during Advisory (i.e. study hall) – he would have to do homework on nights and weekends.

Now

For the most part, everyone (teachers and family members doing homework with Ryan) uses the Google doc I created to communicate. I don’t check the other sources and trust that all of the information we need will be there. Ryan’s workload also eased up after a couple of meetings where we had good discussions with his teachers about what he could handle after a long day of school and how to modify some of the assignments. And Jordan figured out how to balance schoolwork and activities/fun. Which brings me to…

Activities

Then

Jordan had identified several activities he wanted to join which were major time commitments (along with requiring lots of parental driving to and from school). Ryan didn’t want to join any activities that needed a pick up after school, as he was set on taking the bus home. The bus is his routine.

Now

Jordan is ending the year with three school shows under his belt, along with participating in concert and select chorus, two evening vocal recitals, a few in school concerts, and a spot in next year’s a cappella group (not to mention Confirmation, Friendship Circle volunteer and private voice and piano lessons). My mom and I often joke that with all the time spent rehearsing for various events, he should have a bed at the high school. However, joking aside, this year has enabled him to solidify his love of all things music and theater, and he thankfully made many upperclassmen friends who were kind enough to give him rides to and from events a lot of the time. As grateful as I am for that, I’m ready for a break from the logistics involved with all of it!

Ryan surprised us by agreeing to attend Wings club each month. This club pairs neurotypical students with students who have autism to participate together in various activities – for example, attending basketball games, playing kickball, cooking, doing art projects, and raising money for charities. He also – to our even bigger surprise – enjoyed Sparkle Squad. Sparkle Squad is a similar group that pairs special needs students with cheerleaders, who teach them routines to perform at various basketball games. He went to the first practice very reluctantly and had a good time. Then he protested about going weekly, so we compromised on every other week at first. By the end of the season, he was attending most practices.

Gym

Then

Jordan was set on never missing gym or forgetting his uniform/swim trunks. Either of these things meant he would have to make up gym during zero period – some ungodly hour we luckily never had to face.

Now

Neither boy had to make up gym this year. By some miracle, the days they missed school were on non-gym days. Jordan admitted he forgot his swim trunks once, but someone helped him out (eww… and I don’t want to know more). He is just as set on never missing gym or forgetting his uniform or trunks next year.

Looking ahead

We had a nice taste of summer this past weekend when – for the first time in I don’t know how long – it was warm and sunny most of the weekend. Eleven school days until it’s officially summer vacation! I’m ready to trade time spent helping with homework to time spent doing daily loads of laundry containing swim trunks and towels. (especially since I plan to make the boys do some of it!) I’m ready for a break from organizing extracurricular activity logistics. And, I’m more than ready to wake up when it’s light outside!

Happy Summer!

A Hell of a Ride

Four weeks and two days ago, Dan broke his leg rock climbing in Peru.

(At least that’s what his doctor told him to say when Dan shared how he really broke his leg. Unbeknownst to me, Jordan proceeded to share the doctor’s version of events with several people, one of whom reached out and asked, “When did you guys have time to go to Peru? And why didn’t you post any pictures?”)

The doctor told Dan he cannot put any weight on his leg for six weeks and then he’ll have four additional weeks following that in a boot. He was lucky he did not need surgery.

Dan’s accident happened two weeks before our planned spring break trip to Myrtle Beach. I had found one of those timeshare deals where you pay $300 for three nights at a condo, listen to a timeshare presentation for 90 minutes, and then get a $100 AmEx gift card for your time. Meals and entertainment aside, we were only paying $200 for our trip, as the flights were booked with miles.

After the accident, I called the timeshare company to find out exactly where our condo was located. I was not sure this trip was even feasible given Dan’s condition. The person I spoke with said the condo was several miles from the beach and there were no restaurants on the property. This did not sound the least bit relaxing, so we needed another plan.

A Google search found a Marriott resort right on the beach, with a nice pool and a couple of restaurants. Dan could just stay at the pool, and it would be easy for the boys and me to alternate between pool and beach. This was more our speed. They also had a wheelchair we could use when we went places with a lot of walking. Unfortunately, our almost free vacation had now turned into an actual expense. At this point, however, I needed something easy and decided it would probably be worth it. And, that part certainly was – the hotel was beautiful and our time spent by the pool was exactly what we all needed.

What impressed me about the Myrtle Beach area is their focus on Autism awareness. The CAN (Champion Autism Network) card allowed us to skip the line at several places, including the Sky Wheel and Johnny D’s, a delicious restaurant known for their waffles and owned by a woman whose son has autism. There were autism awareness flyers everywhere, and the staff was very welcoming.

What I didn’t anticipate was how difficult, stressful and tiring it is to maneuver a wheelchair. We opted to take ubers rather than rent a car so we could all get out at the entrance of every location we visited. Each time we got into a car, I collapsed the wheelchair, and a combination of Jordan, the driver and I tried to get it in the trunk. Some trunks were easy, but others required quite a bit of effort. Every time we got out of a car, I rushed to get the wheelchair from the trunk and push it open before Dan got out and hobbled around without support. Despite asking him to wait until the chair was set up, Dan’s natural instinct was to help, so he often got out of the car too quickly.

Here are a few of our travel experiences:

The Boardwalk

On our second night, we decided to go to the boardwalk for dinner and rides. After a two-hour dinner (we were lucky to be seated at the same time as two giant parties!), we made our way to the boardwalk. Only it wasn’t like the boardwalks we’ve been to, which are right off the beach and very family friendly. Sure, the Sky Wheel (giant Ferris Wheel) was off the beach, but the other stores and food areas were actually off the street. It was very crowded walking down the street blocks with the wheelchair. At one point, Jordan took over from me; then he got tired and said, “Ryan, you push. You need to do more.”

“Do you really think this is the right place for Ryan to push?’ I asked.

“He needs to step it up,” Jordan said. “We’re tired.”

Ryan suddenly decided after about 30 seconds that he had had enough and just let go. Dan and the chair started barreling toward the street.

$&@#!!!

“Dad is going into traffic!” I yelled. Dan was trying to steer but he was going downhill and couldn’t stop.

Jordan and I ran toward the chair and together, grabbed it and pulled it back onto the sidewalk.

“Ryan! You can’t just let go!” I admonished once we were back on solid footing again.

“It’s heavy and I’m tired,” he said. “I have to go to the bathroom.”

Ryan always has to go to the bathroom at the worst times. We pushed the chair down a few more blocks to the only available public restroom, which was in an alleyway. Ryan went in and I stood near the door, while Jordan moved Dan off to the side.

All of a sudden, about a dozen extremely tall (at least 6’5 and taller) older boys showed up and began shouting angrily at each other. They then stormed the bathroom to continue their fighting. They were screaming and it sounded like things were getting physical, and I was afraid Ryan would get hurt in there. Ryan is about 5’5, which is tiny compared to those boys.

From where Dan’s chair was, he couldn’t see the boys were in the bathroom with Ryan. “Dan!” I shouted. “Ryan’s with them!”

For a few seconds our panicked eyes met, and I wondered who should be the one to go into the men’s room and rescue Ryan. Me, the woman? Or Dan, with his one functioning leg? This was lose-lose. As Dan started to rise from the chair and I shook my head afraid he would get even more hurt, Ryan emerged from the bathroom.

“Mommy,” he said, oblivious to our panic, “It’s so loud in there.”

We later learned from our uber driver that the boardwalk isn’t the safest place to go at night.

The Aquarium

The next day, we ventured to Broadway at the Beach, an outdoor complex with many restaurants, rides and a zip line, and a big aquarium. Dan and Ryan love aquariums and really wanted to go. Jordan, who now had a cold, grumbled about it. I said we would stay an hour, max, and then spend the afternoon at the pool.

Apparently, everyone visiting Myrtle Beach had the same idea as it was a mob scene when we arrived. Pushing the chair up and down the narrow ramps and trying to navigate to the tanks with the crowds was nearly impossible. We couldn’t get close to much, although Ryan managed to take some good pictures, and people did part for Dan’s chair at some  of the tanks so he could get in and see the fish. I kept losing Ryan in the crowd. Between worrying he would disappear, and the physical difficulties of the chair, I was very happy when it was time to leave.

The Wallet

After the aquarium, we got into an uber with driver, Gregory, and headed to our hotel. I decided to make reservations for date night at Crocodile Rocks, a dueling piano bar back at Broadway at the Beach. I had to give a deposit to hold an actual table, which would ensure Dan had a seat for the show, so my wallet was out while I was on the phone. We arrived at the hotel and I jumped out of the car to get the chair. When we got to our room to change for the pool, I suddenly realized my wallet was missing.

“Why don’t you call Gregory,” Dan suggested. “He’s ex-military and I’m sure he’s very honest.”

You can’t just call an uber driver directly, but through the app, if you click on ‘I left something in my uber,’ it will automatically dial your driver. Gregory answered and confirmed he did have my wallet and could bring it by the hotel in 30 minutes.

“Just some advice,” Dan suggested. “Next time you may want to check the car before the driver leaves to make sure you don’t leave anything in it.” Hmm… super helpful. Thanks for that.

We went to the pool and 30 minutes passed. Then 45. I called Gregory again and he said he was tied up in traffic and would be another 30 minutes. Which soon passed.

I called Gregory again and it went to voicemail. What if he had disappeared with my wallet?

A little later, Dan called Gregory again and left my cell number. A minute later, Gregory called me. “I’m so glad you left your number – it doesn’t show up when you call through the uber app,” he said. “I’m at the pool.”

Thank goodness! I got up and started walking around the pool area. “I think I see you!” I exclaimed. “Turn around.” I gave him a big hug and a tip for coming all the way back to us, and breathed a sigh of relief. There are definitely good people in this world! However, we are going back to renting cars for future trips! (Ryan will be disappointed as he loved being in a different car each time and looking on the app to see what type of car we were going to get!)

Having a family member with a physical disability brings a completely different set of challenges to having a child with autism. I have a lot of respect for caregivers of family members who face this every day.

What’s been positive about the situation is the boys are now helping a lot more – the three of us take out the trash and put away the groceries. They probably should have started doing this years ago, but better late than never. My Fitbit steps are also at an all-time high from all of the running around I now do! Dan’s belief in being appreciative for what you have has been reinforced through this experience. And we can finally see the light at the end of the crutches tunnel – only two more weeks (fingers crossed) to go!

I don’t think Dan will ever go rock climbing in Peru again!

A Little Bit Selfish

For the past few months, I’ve been doing something a little bit selfish. I’ve been spending part of my weekends rehearsing for and performing in a synagogue show without Dan and the boys. Yes, I can be away from the family for up to a week at a time when I travel for business, but I don’t feel guilty traveling because that’s work. This show was purely for me.

The show was what we call a Purim (click on the link for more info) spiel. It told the story of this holiday through song parodies to music from Hamilton. This was my fifth synagogue spiel as an adult. Back in 2007, when the boys were almost three, Beth Am, put on its first show. That year, the theme was Broadway, and my parents and sister, Marni, were in it. I could not imagine leaving Dan with the boys every Sunday to go to rehearsals. The boys were a handful and we often needed two caretakers to watch them, so Dan and I had fun in the audience (with an added bonus of it being a BYOB event, so we split a bottle of wine while we enjoyed the Broadway song parodies).

The following year, when the theme of a 60s Purim spiel was announced, my mom suggested I audition. She thought I would really enjoy the experience. Marni was very pregnant with my niece, Shaina (and delivered her a month before the show), so she didn’t participate. I arranged for Aunt Sue to help Dan with the boys during rehearsals, along with other sitters. In return, Dan bought tickets to several Philadelphia Union (soccer) games and tailgate events so he could have some days out once the show ended.

And oh, my mom was so right! It had been years since I was in a show, and it all came flooding back – the fun of learning new songs and dances; the stress of wondering if it would ever click when you’re a few weeks out and it’s not even close to ready; and the camaraderie of working together with a group of people you didn’t know well at first, but who have become your friends by performance day because together, you’ve created and invested your time in something great that others can enjoy.

As a parent of toddlers, particularly one with autism, I never even tried to find something just for me outside of the occasional girls night. It’s hard to give yourself permission to do that. I felt like I was treading water every day for three years between the kids, the house, and work – and if I was lucky at the end of the day, maybe there would be an hour to watch TV. Throughout the four or so months of rehearsals, I found myself happier at home and more attentive and appreciative of my family. I noticed a bounce in my step, and I was always humming tunes. There’s something about finding an interest outside of work and family that is good for the soul. It was also nice doing this with my parents, since most of the time we spent together was with the kids.

The day after the show, I couldn’t believe how sad I was. That’s the downside of spending months preparing, and then after a few hours, it’s over. But life was busy and I quickly jumped into planning the boys’ 4th birthday and all of our fun summer plans.

Before I knew it, it was fall again and auditions were happening for a 70s themed Purim spiel. Marni was back and this year, the original four Holpers (Mom, Dad, Marni, me) performed together. This time, the boys were almost five and I thought they could sit through it. They were mesmerized by seeing the family on stage. Afterwards, I introduced Jordan to the man who played the villain (Haman), and he started to cry.  “He’s not really mean,” I explained, hugging him as he sniffled. “He was just pretending for the show.”

Beth Am did not do a spiel the following year, so I decided to audition for Bye Bye Birdie, which was being put on by a synagogue down the street. While it was a fun change being in an actual show vs a spiel, the commitment was double what I was used to and I found myself out of the house two nights a week plus Sundays, which I didn’t enjoy. I remember being very relieved when it was over. Three years passed after that with no Purium shows, although there was a talent show one of those years (not quite the same).

In 2014, Beth Am decided to do the Les Mis Purim spiel. Marni offered to direct and Sue, choreograph. The boys were almost 10 and Jordan had caught the performing bug, having done children’s community theater since he was six. He wanted to be in the spiel, as did Shaina, now six. Even Dan decided to give it a go, and we arranged for sitters to help out with Ryan on Sundays since he had no interest in participating. This was truly a family affair and incredibly fun to do with Dan and Jordan – it was something so different from our usual activities with the kids and each other. It also gave Jordan time with just us, which I know he appreciated, given a lot of what we were able to do as a family revolved around Ryan. Ironically, the same man who made Jordan cry five years earlier as the villain, played the villain again. This time, Jordan as Gavroche Goldberg, had a scene where he jumped up to point his finger in the villain’s face, saying in his cute, little boy voice, “You don’t scare me, You’re just a big bully!

The Grease Purim spiel, where the same family members participated, was the following year. This was the year we started writing our own music to supplement the scripts we purchased from the writers.

Four years passed quickly after Grease. Jordan got very into school theater during that time along with a variety of other activities. Ryan really enjoyed and looked forward to Sunday Circles (a program through a wonderful organization called The Friendship Circle, which I will cover in a future blog). Dan started a new job. I began traveling internationally. And, we had two years of constant Bar Mitzvahs on the weekends (during which time Beth Am did the Disney spiel and we opted out due to planning two Bar Mitzvahs of our own, but went to see the performance to support the others). So it wasn’t like I missed being in shows with everything else going on. I’d kind of forgotten that exuberant feeling of performing.

When the Hamilton spiel was announced, I had just started listening to the soundtrack and was planning to get tickets for Jordan and me to see it over winter break as Hanukkah gifts from the family. Dan was not interested in auditioning – he didn’t know the music and wanted to be around to take Ryan to Sunday Circle. Jordan was stressed with school work, busy with activities, and hesitant to give up his one free day and Sunday football for rehearsals. So for the first time since 2009, I was the only one of the four of us involved. Now that the boys were 14 and more independent, it was logistically easier to do this. I joined my parents, Sue, Marni, Shaina (11), and Mikey (6), along with the other talented cast members on Sundays and occasional Saturdays to put on what turned out to be (despite our doubts it would ever come together) one of the best spiels ever at Beth Am.

Once again, throughout the process, I thoroughly enjoyed myself and having an outside experience that was just mine. I often found myself humming or outright singing the tunes (sometimes in public – like on the Septa train – without being aware I was even singing odd Hamilton lyrics until I got strange looks!). Dan and Jordan looked forward to my entertaining stories about rehearsals and I looked forward to hearing about their afternoons. And after years of going to Jordan’s shows, it was very cool having Dan and the boys come watch me for a change. While it was the usual let down when it ended, I’m already looking forward to the next one, whenever that is.

My firm, PwC, has a Be Well Work Well initiative, which is about everyday behaviors and habits to help us manage our energy across four dimensions – physical, emotional, mental and spiritual. The goal is, by focusing on habits in all four, we can become and sustain our best selves, both personally and professionally. When I looked at the spiritual list of habits, one of them was ‘set aside me time (something outside of TV or social media) that recharges and renews you.’ An example listed is to do something creative with your friends or loved ones. So I guess being a little bit selfish once in awhile is ok – and even necessary – in order to be your best self.