The Passing of Time

Today, Ryan and Jordan started high school. High school! This is mind blowing to me. How can more than 14 years have gone by that quickly?

Time seemed endless when the boys were babies and toddlers. We would try to get out, see friends, and do activities, but often, it was not very much fun. We spent most of the time feeding and rocking them to stop the crying, or chasing them and watching their every movement when they were toddlers, to make sure they were safe. I would regularly hear from moms of older kids:

  • “What adorable babies/little boys! I miss those days.”
  • “You’re so lucky to be young and have this time. Savor it because it goes so fast.”
  • “Enjoy them while they’re little and you’re young. One day you’ll be 15 years older with teenagers taller than you are, wondering how they got so big and where the time went.”

I would look at them enviously – their faces, refreshed as if they’d gotten a good night’s sleep; their demeanor, relaxed while lounging on a pool chair, sitting at a restaurant table, or hanging out on a bar stool in someone’s kitchen, holding a glass of wine while their kids were off playing somewhere. And I would think, “Are you nuts? You can sit here all night and socialize! Then you can go home and sleep for eight hours. Why am I the lucky one? I want to be like you!”

The boys got a little older and Ryan entered his bolting phase. Whenever he experienced sensory overload – if the environment was too loud, too busy, or too confining – he would run away. We had to watch him constantly and would regularly call to each other across the playground, the gym, a friend’s house… “Are you watching Ryan?” “Where’s Ryan?” “I have him, but I haven’t eaten – it’s your turn to watch him!”

Preschool was a blur of physical and emotional fatigue, but as we got into elementary school, life became more fun. The boys tickled each other, hugged each other, cuddled with us, and had the best little boy scents when we snuggled with them. We still had the ‘who has Ryan’ panicked moments, but they were not as frequent.

Somehow, my 30s disappeared during those years and when I turned 40, the boys started middle school. Their growth from boys to teens was steady. During those years, cuddling became a thing of the past. Instead of them hugging us all the time just because, hugs were given for a purpose – a thank you, or a hello or goodbye if one of us was going away overnight. Little boy scents were replaced by deodorant. Imaginary games stopped and we had longer conversations instead. We did more activities together – trips, shows, sporting events, the family Amazing Race that Jordan organizes every year. They (Jordan, especially) began to value alone time or being out of the house participating in extracurricular activities. And they both grew taller than me.

Sometimes I miss the cuteness, the cuddles and the innocence of the younger years. We FaceTimed my cousin, who had twins in February, on her birthday a few months ago. She had a baby in her arms and one was sleeping. Her two year old was playing nearby. “How was your day?” I asked. She said her husband was sick and she spent the day taking care of two babies and a toddler, not the most relaxing of birthdays.  Dan and I sang and played games through the phone with the awake twin and made him smile and giggle, which of course made us smile and laugh. Babies’ giggles are contagious.  “Aww, I miss this,” I said. “Enjoy these moments while they’re young. It goes so fast.” She looked at me as if I was crazy. I had temporarily forgotten about the sheer exhaustion that comes with twin babies.

To quote my friend, Heather, who summed it up well, “while I miss the age, I do not miss the lifestyle.” Ryan has stopped bolting completely. He lets us know where he’s going if we are out somewhere, and he always comes back to us. When we get together with friends, our kids usually disappear with the other kids, and we’re the ones lounging on pool chairs or chatting with friends in the kitchen for hours, and going home to get a good night’s sleep. Life overall is easier now that they’re older. But, it’s hard accepting we’ve also gotten older in the process.

Last year, Ryan was writing an essay for Spanish and had to describe three people in his family – their hair color, whether they were tall or short, and whether they were young or old. He wrote, Mi padre es viejo. (My father is old.) I said, “Ryan, you think Daddy is old? He’s not old!” The picture next to viejo was a man looking about 80. Ryan erased it and wrote, “Mi padre es joven.” (My father is young.) The picture next to joven was of a college-aged person. “That’s not quite Daddy, either,” I said. “So what is Daddy?” Ryan asked. “He’s between these two people,” I said. “He’s middle-aged.” “There’s no word for middle-aged here,” Ryan said. “So is he viejo or joven?” Hmmm…

Some days I feel like I’m just a few years out of college and can’t fathom 25 years have passed. In college, I worked in admissions and I remember thinking my boss, who turned 30, was so old. Other days, I feel every bit my age and shake my head when I hear younger people complain about being almost 30. A few weeks ago on Bachelor in Paradise (yes, the Bachelor franchise is my guilty pleasure TV), one of the women actually said, “I am 27 now and am moving treacherously toward 30.” “Treacherously,” I thought. “Unbelievable.” I had to write that one down.

I guess age is relative. You might feel young while spending time with people 10, 20, 30 years older than you are, or while having a fun night out with your friends, but feel ridiculously old around a bunch of 27 year olds complaining about the impending descent into their 30s.

Last year, the boys’ school lost power one day in the spring. They had a backup generator so there was heat. There just wasn’t electricity and this meant no WiFi, which is needed to work the smartboards. Jordan started texting me as soon as it happened.

“Can you pick me up?”

“Why would I pick you up? There’s not an early dismissal.”

“Not yet. There probably will be. Everyone is getting picked up early.”

“I highly doubt everyone has parents who can run out and get them in the middle of the day.”

“Well, there’s no WiFi so we’re not doing anything. I’m bored.”

“Why can’t you learn without WiFi? Back in my day, we had textbooks and chalkboards and we managed to get an education.”

“Your day was a long time ago. School doesn’t work like that anymore.” I could feel his eye roll across the phone.

I couldn’t believe I had just said ‘back in my day’ to my son.

Ryan, tu madre es muy vieja! (Your mother is very old!)

For the record, I did not pick Jordan up early that day 🙂

The Paradox of Summer

I have a love-stress relationship with summer. I absolutely love carefree weekends outside – pools, BBQs, the beach, amusement parks. I look forward to family vacations, often one in June after school ends and another late August right before school begins.  And, I’m grateful for a break from the mad rush in the mornings and the busy nights dealing with homework and activities. It’s much more fun to have evenings open for regular power walks, Pilates classes, going to the gym as a family, or girls nights. Summer gives us a pause from the crazy routine and allows us to take a breath and enjoy life so much more.

But – because we have never had luck finding a summer camp or program for Ryan – summer is also a scheduling nightmare.  While Jordan has almost consistently been at the same creative arts camp since kindergarten, and he loves it there, we’ve been on an unsuccessful hunt to find something for Ryan for just as many years.

Our district offers an extended school year program (ESY) for students who qualify, which runs from 8:00am – noon, Monday-Thursday, for five weeks. It is a much more fun version of school and Ryan enjoys it. Various family members and sitters fill the gap in the afternoons and on Fridays, so those five weeks are a nice balance of routine and relaxation.

However, once ESY ends, we’re left with another six weeks of summer to fill. Camps have been a disaster.

  • There was the one YMCA camp, which advertised they had a bunk for kids with special needs and thought Ryan would be a good fit. Once camp began, we realized they did not know how to work with him and we received daily phone calls about his behaviors. Luckily, one of the counselors clicked with him after a few days and became his unofficial 1-1 aide, until this counselor left camp a week early. The next day, Ryan got upset, threw a towel in the pool, and the camp promptly asked us to pick him up and keep him home for the rest of the week. (I was out of town when that happened; Dan got the call and had a few choice words for the director.)
  • There was the other YMCA camp, which really could accommodate kids with special needs – except Ryan was the only verbal one in the bunk – and he did not enjoy himself.
  • We had the camp in the woods designed for kids with autism. They said most of their campers love the outdoorsy environment and they offered art, music and swimming to keep the campers busy. Ryan was miserable during the 40 min ride strapped in a 5-point harness car seat and complained about the mosquitos, the dirt, and how they wouldn’t let him play the guitar in the music room. He often ran away from his counselor during the day and begged us not to make him go back. So we pulled him out after a couple of weeks.

Then came the grand finale of camps. The year the boys were going into 4th grade, Jordan decided he wanted to try a different camp for the last four weeks of summer with a friend. The camp claimed to be inclusive and said if we could get Ryan a TSS (Therapeutic Support Staff who acts as a 1-1 aide), Ryan would be more than welcome to be part of a regular bunk. Getting a TSS is a long process and we knew we qualified; we just wouldn’t know who that person would be until right before camp started. We asked if Ryan could visit the camp in the meantime to get a feel for it. We met with the director and her assistant, who clearly was not comfortable being around a child with autism.

At the meeting, Ryan asked right away, “What sensory equipment do you have?” (note: sensory equipment includes anything that can help a child either get sensory input – like a trampoline or spin disc, or calm his senses – like a weighted blanket, a tent or tunnel. Ryan went through a phase where he was very interested in sensory equipment and where he could find it.)

“It’s a camp,” the director said condescending. “We don’t have sensory equipment.” (That was our first red flag.)

Ryan looked outside at the playground. “You have swings. Those can be sensory,” he said, giving her a pointed look. And then, “This camp is stupid. I don’t want to go here.”

Despite the red flags at that meeting, we knew Jordan wanted to go to the camp, so we managed to convince Ryan he would have a great time. However, the camp strung us along up until the last minute. They had all kinds of concerns about Ryan going there, including not knowing the TSS in advance; Ryan handling himself on a bus to go to the nearby pool (umm…he takes a bus to school every day); Ryan’s ability to swim (he’d been swimming for several years); his flexibility with the camp schedule – how will he react if something changes; it went on and on. We addressed all of their concerns, but sending him there did not feel right to me after months of back and forth. In the end, I didn’t want Ryan going to a camp where the odds were stacked against him from day one and where despite them claiming to be inclusive, it was obvious he was not really welcome.

Since we’d built up Ryan’s excitement for camp, we now had to convince him something else would be more fun. We booked his sitters and family members for the entire month of August and he had a wonderful time at their pools and going out to eat. As much as I would have loved to pull Jordan from that camp, he wanted to go, so we let him have the experience. He ended up with a lead in the camp play. Afterwards, I ran into the director, who raved about him.

“We love Jordan and we’re so glad he came here,” she gushed. “We have ideas already for a show we can write featuring him next year!”

Really? What was she smoking to think there would be a next year? “Thank you,” I said. “But we won’t be coming back to camp where both of my boys are not welcome.”

Ryan has refused to try any type of actual camp after that summer. “I hate camps. They’re stupid,” he would say when we tried. Who could really blame him?

As a result, we have to fill six weeks each summer with people to entertain Ryan. There is no schedule consistency and often two or even three people split time with him every day. It takes months to figure out the schedule and it’s so hard to keep track of it! For a kid who likes schedules and routine, you’d think the inconsistency of summer would be too much for Ryan to handle, but he loves (to quote Ryan) “relaxing for weeks and not going to camp.”

Once ESY ended this summer, Ryan very quickly became used to sleeping in and it was nearly impossible to get him moving and ready for whomever was coming that day.

The last week in July started like this:

Me – “Ryan, [name of who is coming] will be here soon. Get out of bed now if you want me to make you breakfast so you’ll be ready in time.” 

“Later. I’m relaxing.” 

“Not later. I have a conference call later. And I have to get Jordan to camp before that. Now.”

Sigh. “Mommy, it’s summer. I don’t want to rush. If you rush me, I am going to have a fit.”

“No, you will not have a fit. Get. Up. Now.”

“Mommy,” Ryan smiled impishly. “Do your angry voice again.” 

This went on in various forms for two weeks, and then one day I had to catch a train and he wouldn’t get up.

“Ryan, if you want to eat breakfast today, make it yourself,” I said.

I got a text from him while on the train. It said with a smiling emoji, “Mommy, I made my bed, got dressed, and ate breakfast.” I nearly fell off the seat.

“That’s wonderful,” I texted back. “Now you can do that every day!” And I’ve found if I don’t try to get him up and just do my thing, many days he does.

As we are into mid-August and summer is barreling all too quickly to an end, I’m feeling the school-year stress start to creep in and am sad there are only three weeks of summer left. But at the same time, I’m ready for Ryan to have a consistent schedule again. Maybe next summer we’ll find that perfect camp or program for him. Most likely, we will not. What I do know is we need more camps truly equipped to welcome and include kids with special needs – camps with trained staff in place to help them thrive and have a wonderful experience from an early age.

(Note: Ryan was fascinated with this blog topic and asked to read it last night. After finishing, he asked, “Mommy, so what does this mean about next summer? I can stay home and relax and not go to camp?” 🙂 )

Weathering the Storm

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

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

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

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

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

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

This is a typical conversation:

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

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

“Who controls the weather?”

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

“Well, tell the atmosphere to be sunny.”

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

Similar conversations:

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

“Ry, I don’t control the weather.”

See dialogue above for the rest.

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

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

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

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

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

“What woman?” I asked.

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

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

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

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

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

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

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

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

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

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

“You’re 14 and too old to freak out.”

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

Serenity now! Or at least some wine!

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

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

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

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

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

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

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

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

Be well, work well

Last week, PwC closed the entire US firm, giving us the full July 4th week off as part of the firm’s Be well, work well initiative. (Be well, work well is about renewing our energy through four areas – physical, emotional, mental and spiritual.) A firm-wide shutdown is the best gift because you can truly disconnect since no one else (at least in the US) is working — and you can return to work after that time with a relatively empty in-box and most importantly with that renewed energy. PwC has been doing this for 14 years between Christmas and New Year’s, which is always a welcome and appreciated break with the family. This was the first time we had a week off as a firm in the summer.

When PwC’s break was announced, our family already had a late June beach vacation planned, and I didn’t want to spend money on another trip. My kids were also busy with their respective summer activities the week of July 2. Knowing I had four days of the week nearly all to myself (as the weekends and holiday would be family time), I spent awhile thinking about what to do with that precious time. A staycation – for just me! What a rare and incredible gift!

Two weeks before the shutdown, Dan got a new job and found himself with some time off before beginning it. He spent a good part of his first week off getting back in shape – working out and eating and drinking better.

As a result, I vacillated between three options for my week: lazy days at the pool relaxing, an intense focus on fitness, or — what I really needed to do — clean out the clutter throughout the house. Decluttering is on my list every winter break. Some day, moving will be a nightmare because of all the stuff we’ve accumulated during our 15+ years here. My annual decluttering process has never been a success and actually paralyzes me. I’ll buy a box of garbage bags, start with the best of intentions on a messy drawer, move to a closet, and then get overwhelmed thinking of the remaining 30 or so drawers, half a dozen book cases and all the closets and shelves left to clean. I’ll then give up and vow to tackle it next year. No room has ever been completely cleaned out because of this.

Having this new time off was more of an incentive to deal with the mess, and conversations with myself went something like…

  • [Responsible Jodi] What if this is the year you actually get rid of the clutter? How often do you have four days all to yourself? Why would you waste this opportunity? A clean house = a clean mind. Be well, work well!
  • [Lazy Jodi] Really? You’re going to spend four precious days alone cleaning out the house? If you clean all week, you’ll go back to work exhausted. This is your chance to chill and de-stress. Rest, swim, read, go out to eat, go to a spa. Be well, work well! 
  • [Healthy Jodi] Admit it. You know the house clean-up project is a lost cause. Lazing around at the pool will ultimately make you feel guilty. The best thing you can do with that time is get lots of exercise and focus on a healthier diet. Be well, work well!    

So who dominated? No one, actually. The three worked together quite nicely.

When the first weekend began, Dan asked if he could help with the decluttering since he had one more week off himself. Having him on board to clean gave me an idea. What if instead of setting a ridiculous goal of cleaning the whole house, we took the worst room — the one that annoys me the most — and focused on it together? That room would be our office. Dan was self-employed for several years; I work from home a lot; and we’ve also used the office space to store the kids’ school stuff since kindergarten. The amount of papers and boxes piled on top of each other is insane. I hate walking in there but have never been motivated to put in the time to fix it.

My nine consecutive days off ended up being the best combination of me time, couple time and family time. I got my money’s worth at the gym, working out regularly and taking two Pilates classes. I read three books during my several hours a day at the pool, including three luxurious mornings there alone. The combination of sun and exercise helped me sleep better than I had in a long time. For the most part, I made good food and beverage choices. I had a girls’ movie night; Dan and I had a double date night out; and we went to a movie together. Our family spent a very fun July 4th with friends. We all saw the Phillies beat the Nationals, followed by the most incredible fireworks, and pretty amazing local fireworks again at the end of the week. We had brunches and lunches with family members. And 17 garbage bags later, Dan and I FINALLY cleaned out that office. There is actually a floor under all of those boxes and a lot of space on top of the desk! Who knew? I now smile when I walk in there and marvel at how nice it looks.

I saw some great posts of other PwCers who went on what looked like amazing vacations and yes, getting away this week would have been terrific and much more interesting to write about. But Be well, work well was certainly in play all week — and I’m so grateful to PwC for that!

Our Happy Place

Dan, Ryan and I just returned from a relaxing five days in Cape May, NJ. If you’re not familiar with Cape May, it’s a beautiful beach town lined with old Victorian homes – some are Bed & Breakfasts (B&Bs), some are hotels, and others are houses you can rent for the week. There are shops, horse and buggy and trolley rides, ghost tours, mini golf, and a winery, among other things. The restaurants are amazing. It’s quieter than your typical beach town and we like it that way. We call it our happy place.

In July 2004, Cape May was our first family vacation spot. The boys were three months old, waking up every two hours (on a good night), colicky, and screaming constantly from reflux. I was at my wits end from exhaustion and suggested we move this party to the beach for a few days so I could get a change of scenery. I had been to Cape May once with my parents and sister and loved it.

“Are you sure?” Dan asked, probably mentally calculating all of the stuff we’d have to bring with us. “It seems like a lot of work to go anywhere.”

Yes, it was going to be ridiculous, but I convinced him three nights away would be fun. I had another month left of maternity leave and wanted to take advantage of being off in the summer. I also managed to get my mom and dad, grandparents (Mom-mom and Pop-pop) and Aunt Sue to book rooms at our hotel so we’d have lots of help. In the early days, we felt more comfortable going places with an entourage.

We loaded our car with two pack n plays, two bouncy seats, a double stroller, 20 bottles, two boxes of diapers, a tub of wipes, a changing pad, a play mat, two baby bjorns, suitcases full of their favorite toys, and enough clothes, bibs and burp clothes for several weeks.

“Is this really worth it?” Dan asked, surveying the car and the tiny open space in the back for him to see out of while driving.

“I have to take a picture,” Sue laughed. She sat in the backseat between the two car seats and entertained Jordan and Ryan on the ride down.

By the time we had unpacked our car, the sun was going down and it was safe to bring the boys on the beach. We put them in their baby bjorns and they experienced the beach for the first time – one boy strapped to each of us.

That night, Ryan slept in Sue’s room and Dan and I fell asleep around 9:00, right after Jordan did. The next time I heard Jordan crying, I woke up surprised to find myself feeling rested. It was 4:00 am – for the first time, Jordan had slept a seven hour stretch. How amazing! (Note: This was a fluke. I attribute it to the magic of Cape May. Jordan, although the first baby to sleep through the night, did not consistently do this until he was eight months old.)

The trip ended up being more than worth it. We had some fun meals with my family and took walks with the double stroller. There’s something about beach air that is immediately relaxing, and the stress of the past few months temporarily melted away when I dug my toes in the sand and felt the warm sun on my shoulders.

Fast forward to 2008. Mom-mom and Pop-pop rented the Ashley Rose – a pretty, yellow six bedroom Victorian home – for a week in August. There were 12 of us in total. The boys were four and while we had a lot of toys, we could pack like a normal family and Dan could see pretty well out the rear window. My niece, Shaina, was six months old, so the honor of lugging a crazy amount of stuff to the beach now went to my sister, Marni and brother-in-law, Dan. (But nothing could ever top packing for twin babies!)

Here’s what I remember about that week:

  • Jordan making everyone dance in circles to his music
  • Pop-pop playing the harmonica for the kids while they ran around the living room singing and squealing with delight
  • Daily happy hours organized by Mom-mom and Pop-pop that started at 4:00 pm promptly (“Be on time or we start drinking without you,” Mom-mom always warned)
  • Long family dinners with lots of laughs
  • Fun game nights after the kids were in bed with more laughing
  • Ryan locking himself in his bedroom on the last morning and falling asleep, immune to us frantically banging on the door and yelling for him to open it (We finally found a key.)

I also remember this was the week Shaina developed reflux – and screamed and screamed and screamed – thus beginning Ryan’s lifelong fear of babies!

The following year, Mom-mom and Pop-pop rented the green and red Ocean Victorian house for a week. It was just as much fun as the prior year. Shaina was a year and a half by this point, her cries long ago replaced by smiles and giggles. She and Jordan could make each other laugh for hours.

This house also had the added bonus of a room with a pool table. When I found out Pop-pop enjoyed the game, too, every day after coming back from the beach I’d ask, “Pop-pop, ready to play?” “Of course!” he’d always answer with enthusiasm. Sometimes the games were close, but he always won. As a former math department head and calculus teacher, I’m convinced there was something mathematical about the way he hit the ball.

In 2010, instead of a house, we stayed at the Marquis de Lafayette hotel. Mom-mom and Pop-pop rented an apartment on the top floor with a deck and full kitchen, which is where we had our happy hours. We took a whale watching boat ride and Ryan, who was going through an impulsive phase, threw my jacket into the bay. It was rescued but took several washings to remove the fish smell. Jordan wrote a song about the 50 states (he was six and very into geography) and made us all sing it over and over.

That was the last time the entire family went to the beach together. It was hard after that for my grandparents to go anywhere with a lot of walking.

Dan and I continued to take the boys if not every summer, at least every other. It was never quite the same as those special weeks with the whole family, but we made new memories and have grown to love the purple and white Inn of Cape May. Sue has joined us there a few times, too. Ryan learned to swim in the Inn’s pool when he was seven (Jordan had learned the previous summer), and pool time transitioned from me freezing in the water with the boys to sitting on a lounge chair with a book and/or drink in hand, watching them swim.

As the boys have gotten older and enjoy going out to eat more, Cape May has become all about the restaurants and negotiating where we’ll eat each meal. We often map this out a week in advance of our trips as everyone wants to go to their favorite places. This was the first year there were only three of us since Jordan spent the week in Europe as part of a school sponsored exchange program. There was a lot of room in the back of the car after we loaded our suitcases. It really hit me how much they are growing up and Jordan, especially, is starting to do his own thing.

The Ocean Victorian is two houses down from the Inn of Cape May, so we walk past it frequently on our vacations. If I stop and really listen, I can hear little boys’ high pitched voices singing while a harmonica plays; I can hear the giggles of a baby girl; I can hear many adults laughing till they cry at silly things happening during game nights; I can hear glasses clinking together, toasting the beginning of happy hour; and I can hear the balls breaking, signaling the start of a pool game.

Maybe, the family in there right now is lucky enough to have four generations spending the week together. And if that’s the case, I hope they are savoring every moment.

How you play the game

Ahh…the thrill of competition. The excitement of working as a team or individually to try and come out on top. Ryan does not care at all about anything competitive, but Jordan is a lot like me and loves to win. So while winning is certainly fun, I’ve made a point of teaching my boys over the years the importance of doing your best, playing fairly, and most importantly, demonstrating good sportsmanship. I always tell them be a gracious winner or loser – congratulate the other person or team who beats you and say something complimentary to those whom you beat. I’ve told them the story many times about my sister who at age four, after the Phillies lost the World Series, asked why everyone was walking around looking sad. My mom told her the Phillies had just lost; she thought about it for a few seconds and said sagely, “If you win, you win. If you lose, you lose.”

Last week, I had the opportunity to put this into practice from both perspectives. On Tuesday, Ryan participated for the third year in a row in the Montgomery County Special Olympics. I love this event. It’s a chance for kids who do not normally excel athletically to shine. They are cheered on by teachers, parents and volunteer students from their schools. Ryan’s biggest motivation for doing this was my promise to take him home after his events (rather than having to go back to school) if he tried his absolute best – by running as fast and throwing the ball as hard as he could. I may have also put a bug in his ear to try to run faster than the boy who beat him in every event last year. (Bad Mommy moment? :)) This is a boy from another school whose parents are acquaintances, and when I congratulated them on their son’s ribbons last year, they just nodded and did not say anything back to me about Ryan. 

Ryan’s first event was the 200 meter run. I stood near the finish line with my camera ready and saw Ryan running around the bend, neck and neck with that boy, with another student ahead of them. “Go Ryan! Keep running, you got this!” I yelled. He heard me and pulled ahead of the boy, ending the race in 2nd place and earning a red ribbon. Next was the softball throw, which was all the way down on a field parents could not enter. We were resigned to squint at the sea of students and try to figure out which one was ours. When Ryan’s group finally emerged, I saw he was wearing a first place blue ribbon! I’ve never seen him pick up a softball, let along throw one. The other boy walked out sporting a third place ribbon. The final race was the 50 meter dash. Ryan was a few seconds too late in starting after the whistle blew and ended with a respectable third place win.

What a day!  I was amazed and proud at not only how hard Ryan tried but at the results of his hard work, and told him that many times. Ryan himself did not seem overly excited by his ribbons but was happy to have the afternoon off.  When Ryan and I were walking out, I tried to catch the boy’s parents’ eyes to congratulate them, but they didn’t look at me. I shook my head and could not help but gloat a little bit on the inside.

From athletic events to intellectual ones, Dan, Jordan and I drove to Alexandria, VA Thurs night to cheer on Jordan and the rest of his 8th grade team in the National Quiz Bowl competition. They are a smart group of kids who were honest in saying they did not spend any time practicing for this – they had qualified in the pre-test and were there for the experience. 

Jordan’s team was in good spirits after losing round one, as they still earned a lot of points and felt they were just getting warmed up. They won round two and lost round three. Round four was do or die. Unfortunately, they lost. This was the only time where Jordan got upset. He was deflated and tired of losing, and now they did not have a shot at making it to finals.

“You tried really hard. You gave it your all,” I said, trying to cheer him up.

“No we didn’t,” he snapped. “I could have done better.”

“If you win, you win, if you lose, you lose,” I joked.

Jordan gave me a look. “Not helpful.” He went to the room to cool off for a little while.

When he returned, Jordan said they were considering just throwing the last match and giving silly responses to the questions.

“Don’t,” I told him. “Make the other teams work to get to the finals. Go out with a bang.” 

And so the team decided to do just that. They lost round five and began the final round ready to give their competitors – an undefeated team – a run for their money. However, the other team buzzed and answered the first two questions correctly before the moderator had even finished asking them. Jordan and his friends exchanged glances, shaking their heads and feeling like they were about to get creamed. But then a boy on the other team admitted, “We had these questions already in another round.”  

The room was silent for a few seconds until Jordan said, “Thank G-d. I feel a lot better now!” Everyone – parents and kids – burst into laughter.  During the next 30 minutes, the moderator tried to find a set of questions neither team had answered in prior rounds; by the time the match began again, the kids from both schools were laughing and chatting with each other.

It was the most exciting of all the matches. Jordan swept the Roman numerals category, earning him a round of applause, and answered some tough geography and history questions. His other teammates made an impressive showing in art history, music and science/medicine.  It was close the entire time with the parents and teachers on the edge of our seats. In the end, Jordan’s team lost by one question. But they were all smiling as they congratulated their competitors. They knew they had done their best and made one of the top teams in the country sweat, at least for a little while.

Over dinner with a few of the other families later, the adults got drinks and clinked glasses, toasting to a fun weekend and to new friends. The kids joked about their 1-5 record. We laughed about some of the questions and answers given in the matches and the crazy categories our kids selected when they had the opportunity to choose. (For example, we couldn’t believe when there were three Chinese American boys and Jordan on the team in one of the rounds, they picked The Old Testament instead of Chinese Inventions. Per Jordan “For the record, I did not vote for the Old Testament, but if the majority want to answer questions about my book, I’m not going to stop them!” That got a lot of laughs).

Spirits were high all night. Sometimes the best memories are made when you lose. Especially when you play the game like a winner.

X Days

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

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

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

Week 1

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

Week 2

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

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

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

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

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

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

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

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

“I did. I had it both days.”

“How could you have it both days?”

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

Huh?

“A what day?”

“An X day,” he repeated patiently.

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

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

Right. That sounds completely logical to me.

“So he has gym twice now?”

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

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

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

WHAT??

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

“So explain this to me again, Jord?”

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

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

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

Dear Ryan’s teacher,

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

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

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

A Teacher’s Impact

In honor of Teacher Appreciation Week

As we’re approaching the end of our fiscal year, everyone in the US firm is getting their files together – asking for feedback from those they supported throughout the year and hoping the feedback tells a story of the high impact they’ve made on the firm and on their teams.

A recent experience with Ryan’s teacher got me thinking about the importance of not only giving teachers feedback, but sharing the impact teachers have had on our children with others.

Teachers are truly the unsung heroes in many parents’ lives – they put their heart and soul into educating, developing and nurturing our children. I feel this is even more amplified with special education teachers and have the utmost respect for those who are committed to working with children like Ryan – their patience, tolerance, and kindness is inspiring. And when I take a step back and look at where Ryan is now compared to two and a half years ago when he started middle school, the impact his teachers have had on him is incredible.

While Ryan is mainstreamed half the day in regular education classrooms, he is in the autistic support room for a few of his classes and has had the same autistic support teacher – and team – (aides, speech and OT therapists, and behaviorist) for the past three years. In fact, Ryan’s relationship with his autistic support teacher – Mrs. D – goes back to his elementary school, when she was his aide in the early years.

We recently attended our school district’s annual choral Music in our Schools concert – which includes the high school and middle school choirs and all of the 5th graders from four elementary schools. Ryan has performed in the middle school chorus concerts over the past couple of years and has done well, but last year we opted out of this particular concert, thinking it would be too much for him. It was mandatory this year since chorus is his elective, so we decided to push him to participate.

Dan, my parents and I were blown away at how nicely Ryan not only stood with a large group of students for more than an hour and sang the songs but then stood/sat off to the side in a crowd while the 5th graders performed. It was loud and a little chaotic with the moving back and forth, and Ryan remained calm and did not even use his headphones, which he’s relied on in past years for noisy, overwhelming situations.

Ryan’s ability now to do all of this is a direct result of the hard work and dedication of Mrs. D and her team. They are patient, yet firm, and have challenged him over the years to go beyond his comfort zone. He no longer needs an aide to go with him to chorus and has not had an aide with him at any of the concerts. Ryan has enjoyed chorus so much that he will be taking it as an elective in high school.

When I think about impact, Mrs. D and team have gone above and beyond their day jobs of teaching Ryan academics as well as improving his behavior and enhancing his speech and OT skills. They have also helped Ryan develop emotionally and as an independent student. He was far from this level of independence when he started middle school, and I never could have pictured him participating in chorus in this way. In Ryan’s early elementary school years, he would run away in these types of situations; as the years went on, he stopped running and remained with the group but needed constant redirecting and an aide, as well as his headphones. He has grown leaps and bounds thanks to Mrs. D and her team. He’s a different person.

I told Mrs. D how impressed I was after the concert. She asked if she could share that story with her supervisors. I offered to send them a note instead – let them hear praise directly from a parent. I put these observations into an email and sent it to the school principal and Mrs. D’s  two special ed supervisors.

The response was incredible. You’d think no parent had ever written a note like this. The principal and one of the supervisors replied with how wonderful it was to hear from me, and Ryan’s teacher was the most touched:  “I love this email. I cannot thank you enough. My whole team is so appreciative of this. Of course it goes without saying this wouldn’t have been possible without your positive partnership with the team! Thank you once again from the bottom of my heart! Ry has and will always have a special place in my heart.”

Wow – making her day made MY day. And inspired me to share positive feedback more often. Saying goodbye to this group of teachers on promotion day next month is going to be very difficult. Thank you, Mrs. D and team, for the extremely high impact you’ve had on Ryan during his middle school years!

Teaching Tolerance

On Thursday afternoons, my Aunt Sue and Ryan have a tradition. After Ryan does his homework, Sue takes him to Starbucks for a treat. Some days they read together, and other days they just talk. But every Thursday, Ryan will take a picture and post it on Instagram, with a comment about how much fun he had. The Starbucks staff knows him and are always very kind to him. It’s one of his favorite places.

Yesterday went a little differently. When Sue and Ryan walked into Starbucks, three middle school age girls were sitting at the front table. When they saw Ryan, they began whispering, pointing and laughing. Sue immediately was aware they were making fun of him. She bought Ryan his treat and sat at a table on the other side of the room, watching as the girls took out their laptops, looked at something, then looked back at Ryan continued to laugh. Sue was fighting back tears by this point and wondering how aware Ryan was of what was going on. He can be pretty perceptive. She asked him if the girls went to his school, and he said yes.

When Sue went to throw out their trash, she passed by the girls’ table and felt compelled to say something.

“Hi,” Sue said. The girls looked up, curious. “What grade are you in?” 

Two of the girls said seventh and one said eight (Ryan’s grade).

“I’m a teacher,” Sue continued. “And one of the things I teach students is tolerance. Do you know what that is?” 

The girls nodded and affirmed they did, exchanging glances and looking a little scared.

“Good,” said Sue, pointedly turning her head to look at Ryan. “Then remember to always be tolerant.” 

And with that, she and Ryan left. (Way to go, Sue!)

When I saw them a little later, Sue relayed the story quietly to Jordan (Ryan’s twin brother) and I. I asked Ryan afterwards if he knew the name of the eight grader at Starbucks. When he told us, Jordan and I were shocked, as this was a girl who was at Jordan’s Bar Mitzvah last year. Who sat there and heard him talk about inclusion and sacrifice – including the sacrifices Ryan makes to adjust to what can sometimes be a loud and unpredictable world. Although Jordan does not see her as much this year, we couldn’t imagine her making fun of anyone.

Jordan and I agreed if he had been with them at Starbucks (once in awhile Jordan joins Sue and Ryan) the whole situation never would have happened. No one would dare make fun of Ryan in front of Jordan. He is very protective of Ryan and he thinks the kids know he would not let them get away with it.

Our district does a lot to promote anti-bullying and many students at Ryan’s school have known him since kindergarten. The vast majority are either kind and inclusive or don’t really pay attention to him. I know there are also those who make fun of Ryan – or anyone who is a little different – behind their backs. I never thought there are others who would blatantly laugh in his face. At his special place.

It made me very sad. I know some kids are immature or insecure and may be completely different people when they grow up. It’s just too bad they don’t have good role models now to help them get there. Role models like my friend’s daughter, who recently defended a boy with autism at her new school against bullies, “Because,” she said, “What if that were Ryan? It would break my heart to see Ryan picked on like that.” Or like my other friend’s daughter, who defended Ryan in gym class a few years ago when another boy was whispering about him. Or like Jordan, who has written a book and many songs in support of kids with autism.

I guess we just have to take comfort in the fact that there are more good and tolerant young people in the world than intolerant ones. And hope they can stand up for the kids who need them to.

Every Thursday, Ryan posts a picture of his time at Starbucks on Instagram with a comment about how much fun he had. I believe even if he didn’t express it or answer our questions about it, Ryan knew to some degree what those girls were doing yesterday. Because it was the first Thursday he did not post a thing.

My Mental Energy

One of the challenges many parents of children with autism face is dealing with behavioral issues. In Ryan’s case, he loves doing something he knows he shouldn’t and reliving the story after it happens. And the dentist and orthodontist exam rooms have been the source of many a story.

For example — A few years ago, I took Ryan to the orthodontist for a consultation. After he was examined, I met with the orthodontist in his office. During this meeting, I was not aware Ryan was running through the exam room, videotaping himself touching the equipment with a dental hygienist running after him trying to get him to stop. When I realized what he was doing, we left very quickly. Several months later, I was going through the videos on my YouTube account when I saw one titled “Dentist’s office.Ryan had uploaded the entire event and it had 500 views! We’ve had other incidents over the years. Like the time Ryan hit the X-Ray button over and over, wasting the office’s film, while I was trying to talk to the dentist about Jordan’s exam. Never a dull moment.

Ryan’s now a teenager and we’ve had a few incident free exams recently, so I am optimistic when I bring the boys in on their day off from school for a cleaning. I’m planning to spend 30 minutes in the waiting room taking an energy audit.

My firm recently rolled out a Be Well Work Well initiative to help us better manage our energy across four dimensions – physical, emotional, mental and spiritual. You start by taking a quiz – or energy audit – to see where you’re currently operating and then receive tips and resources on how to increase your capacity in each dimension of energy. The intent being if your energy is up, you’ll feel better, and ultimately perform better at work.

We get settled in chairs and Jordan is called back first. Then the hygienist comes out and calls Ryan’s name. He gets up and I remain seated.

“Mommy,” he looks at me confused. “Aren’t you coming back with me?”

“Nope,” I answer. You’re older; you can go yourself. I’ll come back when you’re finished.” Then I add as a warning, “Be good.”

The waiting room is quiet and I turn to the survey.

I don’t regularly get at least 7-8 hours of sleep and/or I often wake up feeling tired. Definitely true. Sleep is an ongoing issue. But that’s for another post.

I often eat lunch at my desk, if I eat lunch at all. True. At least when I’m working from home. Power bars are the way to go. They only take 30 seconds to unwrap and a few minutes to eat. (This, of course, is not the answer they are looking for.)

I don’t do cardiovascular training at least 3 times a week.  False. On average, I’ve been getting my 3 days a week at the gym in. Score one for me!

I have difficulty focusing on one thing at a time and I am easily distracted during the day…

“Ryan’s mom?” I’m interrupted by the dental hygienist. It’s been all of 5 minutes.

“Yes.” I look up.

“Can you come back?”

“He’s finished?” I ask, confused.  

“No.” she looks at me, unsmiling.

Oh s**t.

“This way.” She directs me to a chair in front of where Ryan is sitting.

“Hi Mommy,” he gives me a devilish smile. “Look what I’m doing!” He’s found the nozzle with water used to rinse and is holding it up.

“Yes,” says the hygienist. “We just talked about how spraying the water all over the place makes the floor wet and is not very safe.”

“What was I doing?” Ryan asks as he grins at me.  I shake my head. I’m not telling him any more bad behavior stories because it only fuels more stories.

“Ryan!” I admonish. “Come on, you know not to do this. Stop touching everything or I’ll take your phone away.”

He’s temporarily quiet and I turn back to the energy audit.

I have difficulty focusing on one thing at a time and I am easily distracted during the day…

Whoosh. I hear the sound of the other nozzle that sprays air.  Ryan is giggling and has somehow managed to grab this nozzle while the hygienist is cleaning his teeth and is videotaping the episode on his phone with his other hand. Impressive motor skills, I have to say.

“Ryan, I’m taking your phone,” I snap, grabbing it from him.  You can get it back later when you’ve stopped this behavior.”

“His giggle is very infectious,” says the hygienist, clearly much more relaxed now that I’ve taken over as disciplinarian.

“Mmm,” I mutter. I see the video is on snapchat.

“I’m not sure how to delete this thing,” I say out loud.  I don’t get snapchat at all.

“Just make sure it doesn’t turn up on Facebook,” the hygienist jokes.

Ryan is finally quiet and letting the hygienist clean his teeth.

I have difficulty focusing on one thing at a time and I am easily distracted during the day… Ok, obviously that’s a yes. Moving on.

I rarely have any time when my mind is quiet and free of thoughts.

“Mrs. Singer?” It’s the dentist who’s examining Jordan. “You need to come look at this. He’s missing a metal plate on the back of his tooth which is affecting his bite significantly. And two of his brackets are loose.”

Ugh…

“I’m taking him to the orthodontist to get his braces tightened in two weeks so I’ll have them look at it then,” I tell her.

“This definitely can’t wait two weeks. His bite could be ruined. You should call right away. Get in tomorrow if you can.”

Of course I should. Sigh… I wonder what the chances are they’ll have the coveted 4:00 pm appointment open and if they do, could my dad take him? Or will I have to pull him from school and move around conference calls?

I rarely have any time when my mind is quiet and free of thoughts.

But seriously, can any parents actually say No, this is false. I have plenty of time when my mind is quiet and free of thoughts. I often go into a totally zen mental state and come out refreshed and reinvigorated.”

And if so, who are they and what are their secrets?

In the end, I score a zero in the mental energy category. A zero.

But there’s a silver lining in the day – I don’t have to take Ryan back to the dentist for six whole months!

[Disclaimer – I wrote this in November, and we’re approaching Ryan’s spring appointment. As you can imagine, I am very excited to do this again. 🙂 ]