January Reflections

Happy New Year!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sigh…

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

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

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

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

 

The List

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

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

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

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

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

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

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

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

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

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

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

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

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

Within 24 hours of returning….

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

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

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

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

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

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

Ryan – “Mommy, where’s my charger?”

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

Ryan – “Where are we having dinner Sunday?”

Ryan – “What are our plans next weekend?”

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

Athens, take me away! 

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

Tree of Life

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

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

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

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

He was quiet for a few seconds.

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

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

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

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

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

“Say what you feel,” Dan said.

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

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

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

“You can.” 

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

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

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

Jordan was sitting quietly during all of this.

“What are you thinking?” I asked.

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

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

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

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

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

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

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

Teaching Tolerance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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”