Take a Deep Breath

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Me – “I don’t know.”

Ryan – “In May?”

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

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

Me – “RY….” (Sigh)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Flying High

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Beating the Clock

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jordan said, “Wake me at 6:20.”

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

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

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

“I’m ready!” he exclaimed, proudly.

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

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

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

“Mgkdjfht,” he mumbled.

“Jordan!”

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

Then why did you set it for 6:09?”

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

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

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

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

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

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

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

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

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

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

The Right Fit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

 

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”