Beating the Clock

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jordan said, “Wake me at 6:20.”

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

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

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

“I’m ready!” he exclaimed, proudly.

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

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

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

“Mgkdjfht,” he mumbled.

“Jordan!”

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

Then why did you set it for 6:09?”

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

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

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

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

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

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

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

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

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

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

The Right Fit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

January Reflections

Happy New Year!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sigh…

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

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

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

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

 

Tree of Life

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

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

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

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

He was quiet for a few seconds.

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

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

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

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

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

“Say what you feel,” Dan said.

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

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

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

“You can.” 

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

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

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

Jordan was sitting quietly during all of this.

“What are you thinking?” I asked.

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

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

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

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

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

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

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

Teaching Tolerance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My Mental Energy

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

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

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

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

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

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

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

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

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

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

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

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

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

“Yes.” I look up.

“Can you come back?”

“He’s finished?” I ask, confused.  

“No.” she looks at me, unsmiling.

Oh s**t.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ugh…

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

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

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

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

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

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

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

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

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

The Journey Begins

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

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

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

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

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

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

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

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

Continue reading “The Journey Begins”