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!