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.

Then and Now

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

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

Waking up

Then

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

Now

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

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

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

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

Ryan: “Never mind, I’m up.”

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

Jordan: “mfjdsbedhx” (incoherent mumbling)

Me: “Jordan it’s 6:15. Wake up!”

Jordan: “I’m up.”

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

Jordan: “Okay, okay.”

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

Jordan: “No I’m not. Mfjfjd…”

Dan: “JORDAN, GET UP NOW!”

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

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

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

Homework

Then

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

Now

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

Activities

Then

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

Now

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

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

Gym

Then

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

Now

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

Looking ahead

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

Happy Summer!

The Autism Whisperer

If you have a Facebook account, you probably see memories of posts from prior years pop up in your notifications every so often. My favorites are the ones from when my boys were little – it’s always fun to look at the adorable pictures and relive those experiences.

Occasionally, however, I’m notified of a memory that reminds me of a more difficult or sad experience. And every year, on the last week in January when this particular memory appears, I remember Barbara.

To describe the impact Ryan’s preschool teacher had on him and on all of us, I’ll take you back to 2007. Ryan was three and we had just received the autism diagnosis. It was a very overwhelming time. In addition to trying to comprehend what that diagnosis meant for him then and in the future, we were looking for a new early childhood education option. Ryan’s current preschool was not the right fit, as it lacked the support he needed to thrive. He had difficulty following directions, his speech was limited, and he had a number of sensory needs.

Ryan participated in a weekly social skills group. I had become friendly with one of the other moms, who suggested I check out the Sinai program at a local Jewish preschool – a classroom designed for children with special needs, primarily developmental and/or cognitive. Her daughter recently started school there and she said it was a wonderful program.

I called the school immediately and they had one spot left for September. Barbara, the Sinai teacher, suggested I bring Ryan in to visit. I was impressed with what I saw. There were only seven or eight students in the classroom, with Barbara and an assistant teacher, which was the perfect ratio. They both appeared patient and kind and were constantly engaging the children. Barbara said that in addition to the Sinai program in the morning, three afternoons a week, she would take the children who stayed a full day to the regular education classroom to help them be included in that environment.

On the first day of school, Ryan was clinging to my legs, screaming and crying how he did not want me to leave him there. He had been at the other preschool for two years and all transitions were difficult for him back then. Barbara, calm and reassuring, pried him off me and got him focused on a farm toy.  I knew he had found the right environment when after a few weeks, Ryan had progressed from screaming to mild tears to “Bye, bye, Mommy,” and running into the classroom without a backwards glance.

Because of the Sinai program, Ryan’s vocabulary grew, along with his knowledge of Judaism. Every two months, Ryan was Shabbat star, which meant I would go and join the class for a few hours in the morning in songs, prayers and food. Ryan always sat on Barbara’s lap, sucking his thumb, thoroughly content. Barbara shared an update on Ryan’s day with us daily and was always available on email to answer questions, give advice, or brainstorm ideas. She was never phased by meltdowns, screaming children, or any sort of chaos. Instead, she was often able to calm the affected child quickly. My friend called her the Autism Whisperer. Thanks to Barbara, there was finally a place for our children – where they would not only feel safe and taken care of – but where they could thrive.

Despite the progress, the uphill climb Ryan and we faced seemed overwhelming. I mentioned this to Barbara on several occasions. Once was after someone had shared a story about a child with special needs becoming a Bar Mitzvah. I said, “It’s so hard to picture Ryan in an elementary school classroom, let alone having the skills to study for and lead a Bar Mitzvah service.”

“Oh he will,” she said confidently. “You’re overwhelmed with where he is currently, and that’s understandable. But there is so much inside of him you can’t even imagine him doing right now. One day you’ll look back on this and marvel at how far he’s come.”

She never doubted her children could do anything.  She saw past the disability and unconditionally loved them all.

When Ryan graduated from preschool, I was so sad to say goodbye to her. “I can’t picture anyone but you teaching him. Any chance you can transfer to his elementary school?” I joked.

“Please stay in touch and let me know how he’s doing. And I’m always here if you need me,” she said.

I did. We exchanged emails regularly where I shared updates.

The good:

  • “Guess what, Barbara, Ryan can read!”
  • “Barbara, Ryan learned to write his name!”
  • “Ryan’s learned some prayers in Hebrew school. He’s picking them up quickly.”
  • “Ryan can read Hebrew letters now!”

And the setbacks:

  • “Barbara, Ryan started running away – he regularly bolts and it scares us. He ran out of his elementary school last week. He ran into the parking lot at the library. How do we prevent this?”What’s happening before he runs?” she asked. “He’s getting overwhelmed by something. It’s a sensory reaction to bolt.” She, along with his current teachers at that time, helped us brainstorm solutions.

My aunt, Sue, had begun volunteering to read to Barbara’s camp bunk when the boys were there in 2008.  She retired from teaching kindergarten in Philadelphia a few years later, and this volunteering soon morphed into a teaching position in the Pre-K classroom in 2011. Sue and Barbara were now colleagues and friends, and Sue regularly kept Barbara up to date on Ryan.

I was in bed with the flu on that Tuesday in January 2013 when Sue called. She was crying. “Barbara died,” she finally was able to say through the tears.

What? That could not be possible. It was incomprehensible to imagine Barbara not being here anymore. Not being able to help the next group of kids. Not being here to see Ryan – or any of her kids – grow up.

“Why are you crying?” Ryan asked later. I told him.

He had seen Barbara a few times over the years and of course knew she was his preschool teacher and remembered what she looked like, but it had been four years since she was a regular part of his life. That’s a long time for a child to keep memories.

“What was she like?” he asked.

“She was so nice. She was one of the calmest, most patient people and you used to sit on her lap all the time and suck your thumb. She made you feel safe.”

“Yeah, she was so nice,” he repeated. “You loved her.” Back then, he sometimes mixed up his pronouns.

Over the next few days, the tributes from parents of her former students were shared on social media. I pushed myself to get as close to flu-free as possible so I could go to the funeral.

I had gotten a few of the Sinai parents together to start an Autism Speaks team a couple of years before that. We called ourselves Team Inspiration. In October 2013 at the Autism Speaks walk at Citizens Bank Park, our team tripled in size with many preschool teachers and families coming together to walk in memory of Barbara.  We did that for several years following as we transitioned from the big Philly walk to our own, less intense mini-walk.

I’ve talked to her in my head over the years.

“Barbara, Ryan is navigating middle school beautifully. He walks the halls himself!”

“Barbara, he can sit in a regular classroom for a good part of the day.”

“Now that Ryan has his headphones, loud places no longer bother him. Barbara, can you believe we’ve been to theme parks, sporting events and he even went to a U2 concert?”

“Barbara, Ryan discovered photography and he’s really good at it. He has such a talent!”

“Ryan is communicating so well on social media. And he started a Jewish page with Dan where he posts every week. How amazing that his appreciation of Judaism began with you!”

Every year when my post about Barbara pops up in my Facebook memories and I show it to Ryan, he asks, “How nice was Barbara?”

Like many of the questions he asks, he knows what my response will be and wants to hear it again.

“She was so nice. She was one of the calmest, most patient people and you used to sit on her lap all the time and suck your thumb. She made you feel safe.”

“Are your tears sad tears or happy tears?” he asked last year, which was shortly after his Bar Mitzvah. He was just learning what ‘happy tears’ meant.

“Both,” I told him.

“How can there be both? Why are they happy tears?” he asked “Because,” I answered. “I’m thinking about how far you’ve come since you were in Barbara’s class and how she would have been so proud of you.”

 “Barbara, Ryan became a Bar Mitzvah – he led the whole service and read from the Torah – without vowels. He was confident and calm and then had a wonderful time at his party.”

“Of course he did,” she would have replied if she were here. “I always knew he would.”

Welcome to high school

The start of anything new can often be confusing and overwhelming. We’ve only had seven actual days of high school so far, but with everything we’ve navigated during that time, it seems like we should be well into the year by now.

Let’s begin with the mornings. High school starts at 7:23 am, so we initially set our alarm for 5:45 am to make a 6:43 am bus. Waking up daily with a 5 on the clock is a hard adjustment. It’s dark. It feels so early. I am exhausted all day (caffeine intake has doubled). Now, they did tell us at orientation to let our teens wake up on their own as they are old enough to use an alarm and should be responsible for themselves. I don’t think they’ve met my boys, who sleep through alarms, through the light Dan turns on when he tells them it’s time to get up, through my second wake up call to them 10 minutes after that… therefore, Dan and I will be getting up in the fives for now.

Once he is up, Ryan is extremely motivated to be ready on time for his bus (which comes right to our house) and plans his morning routine so he make it. However, on Thursday, the bus never came. After it was 10 minutes late, we called transportation, who informed us the bus actually did arrive, waited, and left when no one came out.

“What time did the bus get here?” Dan asked, confused, as Ryan is never late.

“6:35,” the person on the phone told him.

What??? Apparently, transportation arbitrarily decided to change Ryan’s pick up time because 6:43 did not give the bus driver enough time to pick up all of the kids. Dan politely told them it would have been nice to know this, especially given Ryan’s anxiety when the bus never showed. (To their credit, they sent a van to get him right away that day.) We are now getting up at 5:35 am to make this new bus time.

Moving on to gym… Despite us telling Jordan to get to bed early, he cannot seem to fall asleep before 10:00. On Thursday, Jordan came home with a cold and low-grade fever, which I attributed to his lack of sleep.

“If I still have a fever tomorrow, I want to go. But you can pick me up after third period, which is gym,” he said.

Yes, you read that correctly. Jordan was planning his day around gym. On Wednesday, we had received a note from the gym teacher letting us know if a student misses gym because of an absence or because they forget their uniform or swimsuit (9th grade boys take swimming the first half of the year), they have to make up the period. Now I am all for physical fitness and I think my boys could use a lot more of it, but make up an entire gym class?

Our options for gym make-ups are: during a study hall (neither boy has a study hall this year); during an extension period (which happens once or twice a month – I don’t really understand this part of the schedule yet); or – wait for it – at 6:25 in the morning during zero period (don’t even ask what that is)! As you can imagine, none of us want to wake up any earlier, so we are all extremely motivated to make sure Jordan and Ryan are in gym and prepared for it with their swim trunks. Of course Ryan has gym on A and C days and Jordan on B and E days. These letters actually coincide with different days each week, but I’ve been on top of it for the last seven days. I think that’s worthy of a high five or a cheers to Mom moment. (Ok, being realistic, I’m taking bets for how long it is until we lose track of the schedule and someone forgets his trunks!)

Jordan has also experienced culture shock where homework is concerned. This is a kid who I don’t think cracked a book at home during his entire middle school career (he managed to get his work done at school each day), yet got great grades, so I couldn’t complain. Now he comes home and works for hours. Last Wednesday, he had an orthodontist appointment after school, followed by a school theater meeting in the early evening. He was visibly stressed about not having time to do his homework.

“We’ll be home from the theater meeting before 7. You have all night,” I told him.

“Do homework at night?” he gasped, horrified.

“Welcome to high school,” I said.

The orthodontist said Jordan could get his braces off in eight weeks. However, since he would have to miss school if he did that, he is choosing to wait an additional two weeks so he can get them off on a half day. Wow. If someone told me a few months ago my son would voluntarily delay getting his braces off so he could be in school all day, I would never have believed them.

Despite the homework stress, Jordan has identified multiple activities he wants to join, which are all extensive time commitments. On the one hand, it makes me happy he wants to get involved, but on the other hand, of course I’m stressing out about it from a scheduling perspective.

Finally, let’s talk about Ryan’s classes. This is the first year where Ryan has had a different teacher or aide with him for nearly every class. He takes three classes in the autistic support room in the morning and is mainstreamed with an aide for four classes in the afternoon. That means there is no one consistent individual who can answer our questions – and we’ve had many. Most had to do with the homework – where to find it and what Ryan actually has to do or study vs the rest of the class as many of his classes are modified.

The district has a portal called Schoology, where teachers post assignments and students can work on them and turn them in. On a few days, when my parents or my aunt were with Ryan after school, they would help him do the Schoology assignments. We would then learn he should have been doing a modified assignment, which could be found in one of many possible locations – in Google classroom, in his email, or in one of his seven folders in his schoolbag. Also, some of the assignments listed on Schoology were actually done in class, but that wasn’t made clear.

You’re probably thinking, why don’t you ask Ryan what he has to do? We’ve tried. Example conversations:

“Ryan, what do you have to do for this Spanish poem project?”

“I don’t know.”

“You were there. How do you not know?”

“It was a few hours ago. I forget. I don’t want to think about school anymore.”

Or

“Ryan, it looks like you changed your Google password. What is it?”

“I don’t remember.”

“Well, we can’t get into your account and do homework if you don’t remember.”

“Good, I don’t want to do homework. It was a long day and I want to relax.”

Between all of the e-mails to various teachers trying to make sense of everything, and with one project due last week and two quizzes this coming week, I was pulling my hair out by Thursday night. I started thinking about how we could make this process less complicated. What we needed was one document everyone could access on a daily basis to let us know 1) what Ryan did in class; 2) what his homework is for that day; and 3) where to find it. In that same document, Dan and I (or any family member working with Ryan) could ask questions and the appropriate teacher or aide could answer.

Since every teacher works with Ryan on his Chromebook (similar to a laptop) at some point during the day, I decided to create a Google document (doc) for all of us to use. Dan and I can also easily log in at any time to update it and see what’s been added. The intent is for this to be the first place we look for information, and Ryan’s teachers can direct us to other sites from the Google doc, as needed.

Dan, who has never used Google docs, was amazed as he logged in on his phone and watched me updating the doc from Ryan’s Chromebook in real time. (Cue song, “A Whole New World.” Seriously, if you’ve never used Google docs, it makes working on a project with multiple people so much easier.)

I sent the doc to one of Ryan’s aides and his autistic support teacher and they loved it. Ryan’s aide added a table to make it even easier to follow, and when Ryan came home on Friday, it was filled in and questions were answered. Whoo hoo! We had a solution!

Friday night around 10:00, Dan found me in bed, about to pass out.

You look exhausted,” he said. “Do you want me to turn out the light?”

“If we put on something good on TV, I can probably rally till 10:30,” I told him.

Yep, it was a wild Friday night in the Singer house. And we haven’t even had a full week of getting up in the fives yet. Imagine how fun I’ll be after one of those!

Only 66 schools days until winter break!

Weathering the Storm

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

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

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

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

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

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

This is a typical conversation:

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

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

“Who controls the weather?”

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

“Well, tell the atmosphere to be sunny.”

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

Similar conversations:

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

“Ry, I don’t control the weather.”

See dialogue above for the rest.

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

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

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

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

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

“What woman?” I asked.

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

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

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

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

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

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

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

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

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

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

“You’re 14 and too old to freak out.”

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

Serenity now! Or at least some wine!

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

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

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

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

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

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

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

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

A Teacher’s Impact

In honor of Teacher Appreciation Week

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

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

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

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

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

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

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

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

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

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

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