Take a Deep Breath

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Me – “I don’t know.”

Ryan – “In May?”

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

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

Me – “RY….” (Sigh)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?”

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!

January Reflections

Happy New Year!

I’m not a big fan of January, other than January 1st. It’s cold, it’s dreary, and there are months of winter and snow still ahead of us. I’ve been reflecting this weekend on some of the (unrelated) things happening during this ‘fun’ month.

Starting with school (or lack of it) — After a hectic December, we are back in the swing of things and slowly easing into the year. Week 1, of course, was a three-day week since New Year’s Day was that Tuesday, and we all appreciated how quickly the weekend came. Week 2 (last week) was tough, given it was the first five-day week since break. However, almost anticipating how difficult it would be for the students, the schools had an early dismissal on Friday. Thank goodness for that. This week is really the first full week and Ryan, especially, is not loving it. Cue the typical Monday morning complaints and fights to get out of bed and move quickly in order to make the bus.

But have no fear, Ry – Martin Luther King day is only a week away, followed by three 2-4 hour days for midterms at the end of the month and another early dismissal on Feb. 1! Then, there is the random Tuesday off for all students the following week. When you add up the actual full days of school over the next four weeks, and figure there will likely also be some sort of snow event in that timeframe, it’s kind of a dream month for students. (not so much for parents!)

On top of all this, I kicked off the New Year with minor foot surgery. Leading up to the surgery, I had several doctor’s appointments to make sure I was fit enough to withstand general anesthesia for all of 30 minutes. Each appointment required putting on a gown. I am sure many of you have worn a gown in a doctor’s office or hospital at some point in your lives. I’ve never really given gowns much thought, but putting them on four different times in a three week period got me grumbling about how terribly they are made. The ties do not align with each other – the right side string is often way above the corresponding left side string and they don’t stay tied very well, so I ended up just holding the two sides together while waiting for the doctor or technician.

When I was at my third appointment, I commented on the terrible gowns when the doctor walked in, to which she replied (I think she was actually a little hurt), “Really? Ours are good compared to others.”

“But, look,” I showed her how I tied it and then got up to demonstrate the ties coming apart. “If they were aligned better, this would stay together.”

“Yes,” she replied. “That’s just how they’re made.” So how exactly are yours better than others?

When I got to the surgical center last Friday, the nurse was excited to give me a gown that tied in the back.

“This is so much better than having to hold two sides together. Those gowns are awful,” she said. A kindred spirit.

It was great until I had to get up and walk down the hall and realized I needed to awkwardly hold the back together with one hand so I didn’t expose myself to the rest of the patients and staff.

There has to be a better way! Maybe other areas of the country have gowns that are more practically made and it’s just here? If not, someone should invent one – perhaps with buttons. I’m not a clothing designer at all, but I can just envision the Shark Tank pitch – “Hi Sharks, I’m Jodi from the Philadelphia area and my company is called Glamour Gowns. I’m seeking a $200,000 investment in exchange for 10% of my company. Sharks, we’ve all been to doctor’s appointments where we had to put on those awful gowns that either don’t stay tied in the front or reveal too much in the back. Patients are nervous enough when they are getting tests done or having surgery performed – they do not also need to worry about exposing themselves. Wouldn’t it be great if they could wear well-made gowns to help them feel more comfortable going into these situations? Enter Glamour gowns to the rescue…”

Yes, I’ve been watching a lot of TV while recovering from surgery, including several Shark Tank episodes. 🙂 (Sidebar 1: If you are a clothing designer and think I’m on to something, let’s talk!) (Sidebar 2: If you want suggestions on movies or TV series to binge watch, I am happy to share my list.)

Speaking of apparel, the surgery went well and I’m now hobbling around in a very hip ortho shoe – the two Velcro straps make it especially fashionable. After the procedure, my foot was swollen and wrapped tightly, so I could not get a sock over it. I just wore the Velcro shoe when I needed to walk.  By last Thursday, I was walking better, the swelling had gone down a bit, and I needed to get to a drug store. I was feeling ready to attempt driving again – it’s the left foot so all I had to do was get in the car and the right foot would do the rest of the work. I managed to get the big sea-green colored hospital sock on and was so excited at the thought of leaving the house for the first time in a week that I didn’t notice until I got to the store how much that sock clashed with the sock on the other foot. My feet looked ridiculous. 🙂

Today, I get my stitches out and move into a new ortho shoe – the doctor described it as a sandal (which should be interesting in this balmy 30+ degree weather with winds in the 20s). Look out, world – I will be rocking the ortho sandal with socks in a matter of hours!

Finally, on to topic #3, I’ve been thinking a lot lately (along with most of Philly) about the Eagles and cheering them on during what was an exciting playoff season. Playoffs (when your team is in them) are probably the only good thing about January.

Back in November, after our embarrassing loss to the Saints, I took the boys to the eye doctor. Jordan and I were in the waiting room talking about the game and Ryan said, “Mommy, I want to go to the Eagles parade this year.” (I purposely did not take him last year because I thought the crowds would be too much for him. I still do.)

“There’s only a parade if they win the Super Bowl, Ry. At this point, it’s not very likely they will get to the Super Bowl.”

“Yeah, it’s not happening,” said Jordan, glumly. “If they make the playoffs, it will be a miracle.”

“But Mommy, I want them to win the Super Bowl. Tell them to do that,” Ryan said, in typical Ryan fashion where he thinks I control everything. (See Weathering the Storm for more on this.)

“Ryan, it’s not up to me. They’re just not playing like they did last year. It’s very rare to get to the Super Bowl and win it, and we had a great year last year.”

“Yeah, but I didn’t get to go to the parade, so I want to go this year.”

Sigh…

A man sitting across the waiting room, clearly eavesdropping, interjected, “Well, they could get to the playoffs if…” [insert all of the things that had to happen for the Eagles to make it.]

“Mommy, see? Tell the Eagles to do what that man said.”

OMG. Thank you, random person, for your unwanted contributions to our conversation.

Fast forward two months and it actually happened. We made the playoffs. Nick Foles and the team did it and everyone had Eagles fever. We were on the edge of our seats last weekend when the Eagles beat the Bears (#DoubleDoink) and again this week where, unfortunately, our road to the Super Bowl came to an end as we lost to the Saints once again. (And we had to listen to Ryan during the entire game whining, “I want them to win, Mommy. Go tell them to win!”) However, they gave it their best shot, and we’re so proud of the team. I guess we just have to find something else to get us through the next three weeks of this very long month!

 

The List

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

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

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

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

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

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

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

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

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

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

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

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

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

Within 24 hours of returning….

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

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

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

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

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

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

Ryan – “Mommy, where’s my charger?”

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

Ryan – “Where are we having dinner Sunday?”

Ryan – “What are our plans next weekend?”

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

Athens, take me away! 

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

Tree of Life

I was in the middle of writing a lighter blog post Saturday morning when I saw the news alert about the synagogue shooting in Pittsburgh. Over the next few hours, Dan and I pored through the Facebook posts from friends – some living in Pittsburgh, one who had once been affiliated with the Tree of Life congregation, and many who simply shared how horrified, sad and dismayed they were.

“What happened?” Ryan asked, after listening to us talk about it for a few minutes.

While Ryan is old enough to know about these tragedies, sometimes we’re not sure how much he processes or really understands. But he needs to hear the truth.

“A man who hates Jewish people went into a synagogue and starting shooting. Some people died. It’s very sad.”

He was quiet for a few seconds.

“Should we post something on Dan and Ryan’s Jewish School?” Ryan asked.

Dan and Ryan started a Facebook page around the time Ryan was preparing for his Bar Mitzvah to share their journey through Judaism. Ryan posts on the page every week for Shabbat and Havdalah, and for the Jewish holidays. Dan tries to explain the weekly Torah portion to Ryan and sometimes, Ryan will share his interpretation. They also write about other relevant Jewish topics.

Thanks to social media, Ryan has learned appropriate social cues and can converse very well with people in writing. Ryan is often very quiet when we are out in a group – especially a group where he doesn’t know many people well. Some people have never even heard him talk (which makes us all laugh as he does not stop taking at home). Then he’ll post something on Instagram or Facebook and they are blown away by his writing and what’s inside him.

“Yes, I think you should definitely post something on your Jewish page,” I said

“What do I say?” he asked. “Can you help me, Daddy?”

“Say what you feel,” Dan said.

“I don’t know what I feel. Tell me what to say.”

“Do you think it’s sad what happened at the synagogue?”

“Yes. Can I say we are heartbroken?” Ryan asked.

“You can.” 

“What do we say about the people who were shot?” 

“You can send our prayers to their families,” I suggested.

He wrote two different posts – one in his personal page and one the Jewish page. This was on his: I am so sad to hear about this shooting that happened at a synagogue in Pittsburgh, PA. We are very heartbroken and feeling very badly about the people who were killed. We are sending them prayers and love!

Jordan was sitting quietly during all of this.

“What are you thinking?” I asked.

“It could happen to us,” he said quietly.

It hit me that if this were 14 -year-old me saying the same thing, my parents probably would have replied with something like, “No, it won’t. This is very unusual and the chances of it happening to us are very slim.” But today’s teens have constant access to news and have grown up hearing about school shootings and hate crimes. A deadly shooting at a synagogue – the worst attack on the Jewish community in US history – brought it even closer to home.

“It could,” Dan said. “But you can’t live your life in fear. Because then you’re not living your life.”

Our discussion continued well beyond that and throughout the day yesterday. Like many people, we’re still trying to process this, although I’m not sure it’s possible to really process it all. Yesterday, I spoke with two people who each had a connection with a different victim. What are the odds of that?

Tiny Giant Steps is a blog about being a working mom of twins, one with autism. It’s not meant to be political, so while that’s the logical next paragraph for this blog entry, you’ll have to find another blog if you want to read a post about our administration, guns, and the state of our country. However, I will end with two thoughts:

  1. How you talk to your kids about these types of tragic events is a personal decision. But especially in today’s times, it’s so important to have the discussions – in an age appropriate way – and keep the lines of communication open.
  2. We can’t become complacent and allow hate to be the new normal. Whether it’s Jews, another minority group, or anyone who is different, I believe teaching our children to stand up for themselves and for others when they encounter anti-semitism, discrimination and hatred is essential. We need to stand strong together and keep love and kindness alive.

My thoughts and prayers are with the members of the Tree of Life Synagogue and my sincere condolences to the families of the victims. May their memory be a blessing.

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. 🙂 ]

The Journey Begins

As a working mom of twin boys – one with autism – I find life throws me something unexpected, challenging, exciting, or heartwarming almost every day.  All stories and insights shared in this blog represent my personal views and insights.

I recently attended a webcast with others in my office who are part of PwC’s Disability Caregivers’ Network. We watched our colleagues share their personal stories as parents of children with special needs, including how they balance work, life, and the unique demands they face, and how the firm has supported them through their journeys. There was not a dry eye in the room when the webcast ended, and I walked away inspired to share my own story.

As a mom of 14 year old twin boys, Jordan and Ryan, I have many experiences, thoughts and feelings to share – some funny, some serious, some frustrating and some heartwarming. When I think back to the first couple of years of Ryan and Jordan’s lives, which I’ve dubbed The Zombie Years due to the severe lack of sleep, all my husband, Dan, and I wanted so badly was to survive them. We thought if the boys could just start sleeping through the night, life would become easier.  In retrospect, we should have held onto the innocent baby days as long as possible, as dealing with developmental delays and finally getting an autism diagnosis at age three for Ryan was only the beginning of a long road.

Over the last 11 years we’ve laughed, we’ve cried, we’ve screamed, we’ve loved, we’ve learned and we’ve grown. While the road ahead will likely be filled with more twists and turns, this blog, Tiny Giant Steps (also the title of a poem my mom wrote), celebrates the journey so far.

People often ask – ‘How do you do it? How do you balance being a mom of twins – and one who has special needs – with a demanding job and manage to have a social life outside of that?’ I don’t think I ‘do it’ any better than other parents. Dan is engaged and always willing to help however he can – which usually involves food shopping and cooking (he’s much better than I am), doing undesirable (i.e. smelly and more physical) household chores, and taking over whenever I’m out of town. We’re so thankful to have a support system of wonderful family members who live close by and amazing babysitters we’ve ‘adopted’ over the years as surrogate big sisters to Ryan. And I’m very lucky to work for a firm that values work-life balance and actively promotes ‘Be Well Work Well.’

I may make it look easier than it is because I’m typically a positive person and can laugh at many of our situations and turn them into entertaining stories, rather than taking them too seriously. Sure, having a child with autism is serious and certainly not easy, but I’ve found having a sense of humor is essential to surviving.

If you’re interested in reading more about my experiences and insights, look for posts here every 3-4 weeks – maybe even more frequently when I get inspired. In the meantime, I’m sharing a link to a blog I wrote which Autism Speaks published in 2015, titled ‘Four things I’ve learned raising a child with autism.’ It’s still very relevant today and is the epitome of ‘Tiny Giant Steps’ – in other words, celebrating those accomplishments that may seem so small to one person but are huge for others.

Thanks for reading and I look forward to sharing more with you soon!

Continue reading “The Journey Begins”