Our Passover Story

close up of hands holding baby feet

We kicked off Passover 2021 COVID-style once again, with one Seder for just the four of us (night 1) and the other on Zoom last night with my family. Typically, we run a full Seder with my family, reading from the Haggadah, and we keep it simple with a few prayers and songs when it’s only the four of us. However, this year, Dan really wanted our small Seder to be more than that.

“Last year at this time, I was unemployed, and job prospects were dim,” he said earlier in the week. “We had no idea what was to come with COVID and we felt pretty isolated. This year, I have a job and am grateful and there’s hope with the vaccines. I want to do something meaningful.”

We started a list of what we wanted to include: lighting the candles; discussing the meaning of what’s on the Seder plate; the blessings – over the karpas, matzah, maror; an abridged version of the story of Passover, welcoming Elijah (speaking of Elijah, I wonder if he masked up this weekend given all of the homes he visited!). And, of course..

Me: We need to include the 4 glasses of wine.

Dan: I love how you think.

Jordan: Mom, it’s 4 cups of wine! Like kid-size cups.

Dan: I like Mom’s version.

There is a significance behind the four cups of wine. The Four Cups represent the four expressions of deliverance promised by God, describing our Exodus from Egypt and slavery and our birth as a nation: “I will take you out,” “I will save you,” “I will redeem you,” and “I will take you as a nation.” The cups are a toast to each of these expressions.

Beyond the Seder and all it includes, one of our favorite Singer family Passover traditions is telling the story of the boys’ birth – which coincided with Passover 2004. I retold the story Saturday night when we started eating our meal.

“Dad and I went to the first Seder on Monday, April 5.”

“Where was it?” Ryan asked.

“Ryan, you know where it was. Mom tells this story every year,” Jordan groaned.

“I want to hear her say it.”

“Mom-mom B and Pop-pop B’s apartment,” I answered.

“With the very long table that took up the whole room,” Ryan added.

“Yes,” I laughed.

“Wait – it just hit me that your last meal before giving birth was all matzah-based,” Jordan said. “That’s a shame. I’m so sorry.”

I laughed again. “No one could believe I was even still pregnant by Passover,” I said.

17 years ago…

By April 5, I was exactly 38 weeks pregnant, but the doctors had predicted labor between 34 and 36 weeks because of the position of Jordan’s head. They even suggested someone stay with me at all times, because when I went into labor, it would likely be a fast delivery.

I’d started maternity leave at 32 weeks and had basically spent the last six either 1) lying on the couch – moving around with my monster belly was difficult and uncomfortable. I think I was the biggest pregnant person ever, carrying 13lbs of baby; or 2) going with my mom to Abington hospital every few days to take non-stress tests for the babies and then out to Bonnet Lane for lunch. The exciting life of a mom-to-be.

When, to the surprise of everyone, we got to the 37-week point, my OB practice scheduled an induction for April 6. They didn’t recommend delivering twins much past 38 weeks. We were told to call the hospital that morning before coming over, to make sure there were beds. If someone had been admitted who was unexpectedly in labor, I’d have to wait a day.

By April 5, I had exactly two outfits that fit the monster belly – both giant sweaters and maternity stretch pants. They are in pictures from every occasion we attended the entire winter. However, Spring came with a vengeance that day, and I found myself with nothing to wear in the 80-degree temps for the first Seder. My mom ran out and managed to find a pretty purplish blouse that fit decently well over the basketball I was carrying. I mention this as significant because the picture of me in that shirt is the last photo I have before life completely changed!

The Seder itself was uneventful (other than all of the good wishes on our delivery the next day), and the next morning, Dan and I woke up at 6:00 am to go the hospital. When I got out of bed, my water broke. I called the hospital to tell them we were coming. A nurse said there were no beds and to call back tomorrow.

“But my water broke!” I interrupted her, not wanting to risk Baby A’s quick arrival at our house. She said to just come over and they’d figure it out.

They found us a room, and we settled in. I was only a few centimeters dilated and not really in pain at that point, and several hours later, my family had gathered to hang out with us while we waited. My parents, sister and brother-in-law, Marni and Dan, Aunt Sue, and Mom-mom and Pop-pop were all there.

Only my family could turn labor into a party. Nurses kept commenting on how much fun we were having. Marni had made a labor mix tape and we sang along and laughed at her selections (eg Push it). After some time, I was 4cm dilated and had started to feel it intensely, but the pain evaporated after the doctor administered an epidural.

Once the amazing epidural kicked in, we played a version of the memory game, I’m going on a picnic and I’m going to bring… you know that game where you have to remember what everyone before you said and then add a new thing with the next letter? Our version was I’m going to the delivery room and I’m going to bring… (Anesthesia, Babies, Car seat… is it weird I still remember some of what we brought?) The family was impressed with my memory, given the circumstances, but always competitive, I wasn’t going to let a little labor get in the way of a game!

“Hang on,” Jordan interrupted when I got to this part. “The family was in the labor room with you and Dad the whole time? Playing games and singing? he asked incredulously. “Actually, never mind. I wouldn’t expect anything less. Go on,” he said. (I did, after a quick explanation that no one but Dad was there for the delivery part!)

The day continued. By 4:30, I was 6cm dilated. My ‘fast’ delivery had reached the 10 hour mark. We were finished with games; I was cranky and tired and wanted these babies out. The doctor had given me drugs to speed up labor, and pain was setting in again. There would be no more pain meds to help.

Marni and Dan decided to go to Dan’s mom’s house for the second Seder, since it seemed we still had awhile to go. But – in a dramatic turn of events – I was suddenly 10cm dilated at 6:00pm, and it was time to start the delivery. My mom called Marni and Dan, who had just arrived at his mom’s Seder. They turned around and drove back to the hospital at record speed so they could be there when the babies were born. Because – you know – it would be a ‘fast’ delivery.

Four hours later, I was begging for a C-section, and the doctor and nurses started the prep. Mom-mom, Pop-pop and Sue had gone home and were waiting by the phone for news. Marni’s Dan also went home to get some sleep, so he could go to work the next day. My poor family had hung in there for such a long time!

Finally, a quick 18 hours after my water broke, Jordan and Ryan made their debut into the world on the second day of Passover, at 12:18 and 12:20 am on April 7.

Marni and my parents cooed over the babies when they were wheeled out of the delivery room. They, and Dan, finally went home and fell into a deep sleep.

“How long were you in the hospital?” Ryan asked.

“I think it was five nights.”

“Where was Dad?”

“He was there most of the time,” I said. “One night he went to Aunt Marni and Uncle Dan’s apartment for dinner – they had leftovers from the Seder they never attended. Dad didn’t realize the leftovers were supposed to last them the whole week, and he kept taking more. He ended up eating all of their food!”

Ryan laughed – he loves this part.

“I was really hungry! And tired. And overwhelmed with these new babies!” Dan protested, as he always does.

“And then you brought us home, and that’s the end of the story,” Ryan said.

“Well, it’s actually the very beginning,” I replied, thinking about our 17 years of stories since then – some told through this blog, some kept between us, some still to be told. What an amazing, emotional, exhausting, miraculous journey.

Passover, while primarily about freedom and triumph over adversity, is also about strength, resilience, faith and miracles. I can’t think of a holiday more fitting to have become a mom to these two incredible boys.

January reflections (in COVID times)

Hello, readers – we made it to February! With January, my least favorite month, behind us, I thought I’d share some ramblings about my family’s start to the year. This is a little different than two years ago, when my January reflections post covered school, surgery, and an Eagles team that made it to the playoffs!

A dry-ish January

Dan and I officially finished dry – well, dry-ish – January. Two years ago, when we first decided to give dry January a try, we made it to MLK weekend. Because it would have been rude to not drink the delicious bottle of wine our friends brought to dinner, that was the end of our efforts.

“You did a dry Janu,” Jordan said, when I told him. “You made it through half the month, so you can’t actually claim dry January.”

We decided on January 1 this year to try it again. Jordan just listened and shook his head. “Good luck with that,” he said. He had a point. It’s hard to do dry anything when you’re just sitting around your house most of the time. And, when your wine collection is literally three feet from your desk, and you see it all. day. long.

I read an article earlier this month about how to keep yourself on track if you’re doing a dry January. The suggestions were things like – After work, go straight to an activity, so you don’t think about having an evening drink. Go to the gym. Take a class. Walk with friends. Go bowling. See a movie. So, the author was essentially saying, get out in the world with groups of people? Hmmm. After I confirmed this was not written pre-COVID but actually in November 2020, the author’s credibility diminished, and I stopped reading.

Two weeks into January, we discussed whether one drink on a Saturday – like a short happy hour – would be okay. We could do a very light January, instead of the full-on dry month. Then last week, I made the point that it’s a long week here at home. We’re both going nonstop all day, so how can we deny ourselves a Friday night glass or two of wine as a reward? After that, it morphed into a ‘light weekend’ January.

When Jordan saw me opening a bottle that Friday night, he raised his eyebrow.

“For the record, I called this on January 1st,” he said.

Interestingly, the light January had a positive effect – we’ve both found our tolerance has decreased, and we can’t really drink more than a couple of glasses at a time. Fewer calories are definitely a plus (score 1 point for January), so we decided to keep going with a light February.

Wasting time

One of the things I’ve noticed about our lackluster COVID social life is how much time we spend doing and thinking about things we never would have before March 2020. 

Take the Bernie Sanders memes. They’re hilarious, but would they have garnered the same amount of enthusiasm pre-COVID? I looked back on two nights of family texts a week ago – 45 minutes on a Thursday and an hour that Friday – spent sending our own Bernie memes back and forth. My sister, Marni, and I were the most obsessed. She figured out how to cut out Bernie using the picsart app and sent me some tips. Mine looked awkward at first, but I kept practicing and got better each time.  I figured out on Friday if you click cutout and then select person, Bernie’s chair goes away, and he can fit in so many more places.

We texted our pics to the family – Bernie outside Beth Am (our synagogue), in our family photo at my niece’s Bat Mitzvah, outside Marni’s house before the Bat Mitzvah, outside the boys’ high school, at Cape May sitting on the chairs with Ryan by Congress Hall, on the American University sign next to my college friends and me, playing in the snow with Marni’s kids, sitting next to the Hollywood sign when we were in LA, and with me on various travels around the world.

“You’re still doing this?” Dan asked later Friday night, several hours after I’d started playing around with the app.

“I want to do it,” Ryan said. “Can you show me?” I did, and he picked it up quickly.

“This is really dumb,” Jordan said. “I don’t get it.”

“But look,” I said, pulling up the latest one I found on Instagram. “Here’s one the theater department posted of you and your friend holding Bernie up during your song in the last show.  It’s a riot.”

 “It’s not that funny.”

“It’s the best thing ever,” I argued and pulled up another picture. “Here he is with Bunny (my stuffed animal from childhood)!”

He just shook his head. We usually have a similar sense of humor, but Jordan is not into these types of things (nor does he appreciate political satire song parodies, which I love).

There’s no way I would have spent mindless hours on Bernie memes before COVID. We were always somewhere at night, and free time was precious. But because I had time, I was able to learn a new skill – Bernie cropping! (Score another point for January 😊 )

I’m not the only one losing hours of my evenings and weekends to random things. Jordan has been listening to lengthy Survivor podcasts – one morning he was up at 4:00 am and couldn’t go back to sleep, so he found a podcast that kept him busy until 7:15. Ryan likes to look on realtor pages and virtually visit houses on the market. He’s very into whether the houses are old and cluttered, or are redecorated, and will show me photos, asking when we can redo his bedroom, bathroom, and many other things in our house.

“We just did the kitchen a little over a year ago,” I remind him. “And the shower in my bathroom right before that.”

“So when can we do the other rooms and get new furniture?” (because, you know, we’re made of money and can just renovate the whole house on a whim)

“We can’t.”

“Well, how ‘bout we just move then?” he’ll often suggest. “I can find us a house.”

Speaking of obsessions, Dan has become very interested in his genealogy and recently discovered records dating back to Eastern Europe from great, great, great grandparents  – birth, death, immigration records… it’s interesting stuff, and he tends to research this for hours and talk about it – a lot. When he’s buried in his iPad searching, I can’t get him to concentrate on anything else.

His focus on this is just as intense as when he did 23andMe a couple of years ago and continuously shared his results with us as they were updated. He was most intrigued with his .2% Sardinian roots (which have since expanded to .6% when 23andMe changed its algorithms). Keep in mind, Dan has an interesting DNA background as it is, but it was the Sardinian piece he constantly talked about.

“I’m .2% Sardinian,” he told us proudly several times a week and shared this with anyone who unknowingly brought up the topic of genealogy.

Jordan and I regularly made fun of this. “Did you know Dad was Sardinian?” Jordan would ask when Dan found ways to bring it into meal-time conversations.  

“No way! That’s wild!” I’d reply.

A couple of years ago, we were out to dinner with friends, and one of our friends mentioned genetics. I was sitting next to Jordan and we made eye contact right away. I whispered, “I give it 3 minutes.”

“Bet you it’s less than 30 seconds,” he whispered back. “And 5, 4, 3…”

“Speaking of genetics, I found out I have Sardinian roots!” Dan exclaimed to our friends.

“Nicely played,” I said to Jordan.

Ryan’s questions

I’m sure I’ve mentioned in other blogs Ryan likes to ask lots and lots of questions. About 90% of them start with Mom. I think he says the word, Mom, 600 times a day. “Mom,… why are…?“Mom, what’s going to happen when…” “Mom, when is…?” “Mom, remember when…?”

He mostly sits on the couch with what I call his ‘equipment’ surrounding him. His iPad, phone, charging block with multiple USB ports, and plugs, which I’m constantly tripping over. I’m always telling him to move his equipment before he causes an accident.

Ryan’s questions generally fall into three categories:

  1. Questions about things that happened in the past (e.g. bad behavior stories), which he knows the answer to but wants to hear me say it again.
  2. Questions about an upcoming event where he has concerns (e.g. his recent IEP meeting). These questions have also likely been answered many times, but he finds comfort in talking about them over and over.
  3. Questions about something in the future where I don’t have an answer and can’t control whatever the topic is (e.g. the weather), but he wants to hear what I think, take it as gospel and then ask me about it again. (and again…)

The third category was the source of most questions last month, with the majority being about the COVID-19 vaccine. Questions focused on when our family members in the 65+ category will get the vaccine, when the four of us will get it, what we can safely do this summer if we all get the vaccine by then, etc. It originally seemed promising. I was guessing, based on the news, our 65+ family, and maybe Marni as a teacher, would be vaccinated in February/March, and the rest of us by Summer. Given that timeframe, of course we’d go on vacation. I might even send him back to school in the Spring, knowing our older family members wouldn’t catch anything he might bring home.

“What do you mean by summer, Mom? May? June?”

“Hopefully one of those” I said.

But PA, like many states, is very behind in rollouts, and if my 95-year-old grandmother can’t get an appointment, some days it seems unlikely the vaccine will get to those of us who are younger and don’t have preexisting conditions in time for the summer.

“It could be July/August,” I said on another day.

“I thought it was May or June,” he argued.

“Well, I was just guessing. I’m not in charge of the vaccine.”

Why not?”

“Ry!”

“But, Mom, it’s May or June, right?”

“Ryan, I don’t know!”

“If we get the vaccine, can we go to Hawaii?” (We were supposed to go in August, and of course we cancelled that trip.)

This went on for weeks.

One day, it seemed so dismal hearing about how hard it is for people to get appointments here, so when Ryan asked, I snapped. “It’s going to be 2025!”

“Huh?” he asked, staring at me like I had lost it. “You’re kidding, right?”

“No, it’s never happening. We’re going to spend the next four years together in this house. Four more years of you on the couch with your equipment. Four more years of negotiating space when Jordan needs quiet so he can record something for school – because he’ll be taking online college music classes from his room. Four more years of Dad sitting hunched over at that bay window in the bedroom. Four more years sitting in my basement office with no sunlight. When someone compliments your elementary school artwork on the wall behind me while I’m on a video call (which happens frequently – my walls are full of the boys’ artwork), I’ll say, ‘Thank you. My boys, who are almost 21, made them. I meant to replace the school art with big canvas prints Ryan took in Hawaii, but we never made it to Hawaii because we’re still waiting for the vaccine!!!’”

“Mom? Are you having a temper tantrum? Do you need a time out?”

Yes.

After about 30 seconds… “Mom? When will we really get the vaccine?”

Most days I’m generally positive, but every so often, it’s easy to hit a wall.

As we kick off February, I’m raising my glass of sparkling water on this cold and snowy Monday in hopes of an early spring — and to an emergency authorization of the new J&J vaccine helping speed up the rollout — so everyone who wants to can be vaccinated by the Summer!

Thankful

cooked turkey on table

Hello readers! It’s been awhile since I last published a post. Honestly? I haven’t felt motivated to write anything for months. Of course, with so much going on in the world, there are a myriad of topics I could have covered from a parenting/working mom perspective. What about…

The election? With the polarizing views in our country and the intensity leading up to November 3 and the days that followed, I was more inclined to stay on top of the news rather than write anything myself. Our family was glued to the TV and fervently hoped for a positive election outcome.  

As our current President fades into the background more and more each day,  I do think Ryan will miss all of the crazy Trump stories. Ryan has always loved bad behavior stories, and Trump was like a cartoon character to Ryan. Ryan often asked “What would Trump do?” or “What would Trump’s behavior be like?” when imagining Trump taking the place of Ryan or another family member in a situation they were facing. For example, when the WiFi didn’t work for 30 minutes one day during virtual school and Ryan was starting to get upset, he asked me, “What would Trump do if his Wifi didn’t work?” “I don’t know – what do you think?” I asked. “He would likely throw a fit. Maybe he’d throw his Chromebook,” Ryan said. “He just might do that,” I agreed. 

COVID-19? I just can’t.  I wrote a couple of blog posts earlier in the year when the lockdown first happened. These days, there is enough ongoing news on this topic from all angles, including parenting. And thinking about the upcoming cold winter and how isolated we’ll likely be is a bit depressing. No need to write about it. I am praying for the health and safety of everyone around the world and a quick dissemination of the vaccines! 

Whether or not to send my kids back to school when it opened as a hybrid option? I came close to writing about this one. I was undecided because there are good points to both sides, and I really vacillated on this topic. Physical health vs mental health and education. The boys wanted different things and were very vocal about their preferences. 

The week we had to make a decision:

Me to Dan: “I’ve been talking about this issue for weeks with the boys, and you haven’t weighed in much. What’s your opinion on all of this?”

Dan: “It’s too dangerous. I’m afraid of the long term repercussions of COVID. We shouldn’t send them back.” 

Me: “The school has a solid plan in place for keeping the kids safe. What about the mental health of our kids – especially Jordan, who is craving interaction and complains daily about technology issues? And Ryan will learn so much better in person. I’m not sure how much he’s getting out of the virtual classes.”

Dan: Oh, I didn’t think about the mental health side of things. That’s a really important factor. We should send them.”

Me “But what about the safety of our family? They could be infected and not have symptoms and pass it on to all of the older relatives. I’d never forgive myself if we got anyone sick.”

Dan… “Um…. I agree with whatever you eventually decide?”

In the end, physical health concerns won, and we kept them virtual. After only two weeks of being open, schools are now virtual again for the next two weeks across the county because of the rise in cases (not being spread in schools, but through get togethers, parties, etc.). 

The lack of Clorox wipes in stores?  I’m kidding. I didn’t actually consider that as a topic. Well, maybe a little bit. We’re almost finished our supply and I would be very grateful to get a box for Chanukah. How sad.

So then, what is there to write about? It’s been Groundhog Day since March. With the exception of a few amazing outdoor outings and one week in the Poconos, the highlight of almost any weekend is figuring out which bottle of wine to open and when, which Netflix series to begin or finish, and when to take an hour walk outside (if it’s not freezing or raining). Very exciting stuff.

And yet, despite this crazy, scary state of the world and a depressing 2020, there are things to be thankful for. In addition to the obvious – family, friends, health, employment, and healing for our country – I’m going to share a few smaller ones.

I am thankful for time with the family. As much as it gets old with everyone being in the house constantly and very little privacy, I was thinking the other day about how we’d hardly see Jordan if this were a typical junior year. And how rushed it would be each night with various activities and other obligations. Now we can eat dinner together, talk without feeling hurried, and take our time on weekends. Most Sundays we watch the Eagles as a family (not the best season, but hey, it’s quality time), where in the past, the game would be on multiple TVs and usually at least one of us was out of the house. When the boys graduate high school, I’ll know we took advantage of the precious time we would not have had in normal circumstances.

I’m thankful being at home gave Jordan a chance to explore his passion for songwriting through two School of Creative and Performing Arts (SOCAPA) programs. If there hadn’t been a pandemic, Jordan would have gone back to his camp for the 10th summer and never learned all of the music composition skills that led him to publish his first album (Candy Hearts – available on SoundCloud). He also would not have met a really cool group of kids from around the country who share his passion. Through this program, he changed his mind about what he wants to focus on in college and now has a solid list of schools to explore.

I’m thankful virtual school has helped Ryan become independent. He gets up on his own, logs on and off to various classes without any prompting, answers questions, figures out his work, and makes and cleans up his lunch. The only class Dan or I have to get involved in is the biweekly cooking, depending on the recipe.  Academically, I’m not sure how much he’s actually retaining, and I do believe in-person learning is better for him.  But when I think about last Spring and how much hand holding he needed from us, he has really come a long way.  

I’m thankful Dan and I both have jobs we can do from home. I’m especially glad that Dan, who spent a number of years in negative work environments, finally has a job at a company like mine, that values its employees. Of course I very much look forward to the day when I have the option to safely go to an office when I want to see other people, and to a time when I can safely travel somewhere around the world to run an in-person training. Virtual training is just not the same. (Ryan asked me the other day, “Mom, do you miss traveling to other countries?” I said, “I do. But at this point, taking the train to Center City for the day would be exotic.”) For now, though, I’ll enjoy sleeping later than I normally would have, having the time to exercise regularly, and wearing comfortable leggings to my home office every day. 

And finally, I’m thankful we had one celebratory morning with a very small group of people out of the house last weekend. My niece’s Bat Mitzvah service was probably one of the best days of the year. Approximately 25 people gathered with masks and spread out in our synagogue, and we were lucky to have the experience of watching and participating in the service, which was live streamed to others. Just being in the synagogue for the first time since March and spending a few hours with all of those people at once was good for the soul. (My niece was amazing – we were so proud of her!) 

I’ll leave you with a quick story and a lesson I learned that morning about masks. When we got to the synagogue, I put on my fancy black mask, which matched my black and white dress. I had an extra (back-up) mask in my bag. The service began, and I realized the fancy mask was very uncomfortable, and I was having trouble speaking and singing with it on. I pulled it off and replaced it with the back-up. This was much better, but the back-up mask didn’t match my dress at all. I was debating in my head comfort vs fashion, when the Rabbi said we were now moving to page 100, which was when my sister and I had to come up to the bimah for our Hallelujah duet. I made a fast decision – fashion (this would be on video forever, after all) – and quickly changed masks. Unfortunately, I put the fancy mask on backwards, and when I started singing, it kept moving down my face, under my nose. Throughout the entire song, I would pull it up, and it would fall down. (My nephew had a lot of fun laughing about how Aunt Jodi couldn’t keep her mask up.) Finally, I yanked it up really hard, hoping it would stay in place, and it went over my eyes. 

So my lesson is, if you are speaking or singing in public with a mask, practice ahead of time with your mask on to make sure it’s comfortable and fits well!  

Wishing you all a happy, healthy and safe Thanksgiving! 

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

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.