Mountain Climbing

Here we are at the end of January, and I’m sliding in a new year post just under the wire. New Year’s resolutions – we have the best intentions when making them. I always resolve to exercise more and eat less. And I’m generally good for it throughout the first month of the year.

This year, I decided to go a little deeper with my resolutions and really focus on something that’s been on my mind for a long time – planning for the boys’ futures. For several years, thinking beyond high school and the many things that must happen before June 2022 has been paralyzing. It seemed like a giant mountain to climb with no clear path on how to make it to the top. At two completely opposite ends of the scale, we have college planning for Jordan and figuring out what 18-21 and beyond looks like for Ryan. Every time I’ve started to think about either scenario, I’ve told myself we have time; let’s not stress about it yet. But the reality hit me at the beginning of sophomore year – we don’t have that much time anymore.

And so, I started the planning process in the Fall with the goal of doing as much as humanly possible in 2020, so the last two years of high school don’t get out of our control.

Jordan’s future was a little easier to begin researching. College is a common path. Many of our friends and family have done it with their kids, and Jordan has friends in college who can give advice. We started to discuss it in October. He has a high-level idea of what he wants to major in – “Something that combines music/performing arts and business” – was at least a starting place. Not that anyone needs to know at age 15 what they want to do in the future but having some general sense can help us figure out the right schools to consider. Jordan and I looked at majoringinmusic.com (my mom’s friend owns this business) and checked out curriculums online of schools recommended to us that we thought might be good options. We narrowed it down to 10 or so to visit next year.

Of course, now that Jordan has taken the PSATs, we’re getting multiple college brochures in the mail daily, and Jordan’s email is also blasted every day from universities, so the list could change. I haven’t heard of half these schools. Last week, Dan said he was impressed we got one from Brown.

“Jordan, wow – Brown wants you,” Dan said. To which Jordan sarcastically replied, “Brown wants everyone – it’s called post PSAT mass mailing.”

Like many parents, our biggest issue and stressor will be paying for it. College costs are insane. Even the state schools, which are supposed to be affordable, have skyrocketed since my college years. A ‘paying for college’ workshop is offered a couple times a year in our area – we’d gotten flyers in the mail and it looked intriguing, but it was always scheduled for a date when I was out of town. Finally, I saw there was one in October Dan and I could both attend. We learned some useful tips and set up an appointment with a college planning advisor following this.

I spent the beginning of January getting all the paperwork together, so the advisor can guide us on the best path forward given Jordan’s potential school choices, grades, and potential SAT scores, and we now have a couple of appointments set up through the Spring. I’m still not sure how to actually finance this, but at least there will be someone helping us throughout the process. Yes, there are a million other next steps like SAT prep, college visits, college applications, etc., etc., but those are things that can start during the summer.

Ryan’s future is a bit more complicated. He has the option to stay at school until he is 21, doing work-based learning/employability skills type programs. There are also post-secondary programs for students with developmental disabilities like THINK College, and there are certificate programs and vocational training/tech schools which could be options. Just as important, Ryan also needs to develop independence skills, so he can ultimately live on his own. Many things to think about, so little time. How do we even begin planning for all of this?

Like most kids on the autism spectrum, Ryan has an IEP (Individualized Education Program). The IEP includes academic, social, and employability skills goals. This year, as part of his curriculum, Ryan has been spending several hours a week working at school (e.g. school store) and in the community (Nick’s Pizza, a local synagogue, etc.). The school partners with several local businesses where the students with developmental disabilities work and learn basic working skills and each quarter he goes to a different one. It’s great he’s getting training on following directions and building these skills – everyone must start somewhere and there’s no shame in cleaning tables or pushing grocery carts. However, what we really wanted was for the school to focus on Ryan as an individual. Ryan has a lot of strengths, talents and interests which people are unaware of because he can be quiet outside the house – and if tapped into, he could really reach his full potential.

First, Ryan has an exceptional memory – he remembers things from years ago and is particularly interested in addresses – he knows where everyone in his world lives as well as the addresses of all the doctors, business and vacation spots we frequent, and he can locate all of this on Google Earth. A typical conversation:

Ryan: “Mom, what’s so and so’s address?”

Me: “I don’t remember. But I bet you know.”

Ryan – “Tell me. I want to hear you say it.”

Me – Sigh, “Is it… [making this up] 825 Moreland Ave in Horsham?”

Ryan – “Don’t you mean 815 W. Moreland Ave, Horsham, PA 19044?”

He is also an amazing photographer and captures images in a beautiful way. He enjoys taking pictures and sharing them on social media. He’s good with computers – once he learns something new, he can easily navigate it. He loves animals (outside of barking dogs – the sound hurts his ears) and is especially gentle with cats. Ryan also enjoys cooking. That’s a lot of strengths and interests. So… how do we take one or more of these things and capitalize on them?

In the Fall, I had coffee with a mom in our school district whose son is an adult with a disability, successfully navigating the working world. She shared a lot of useful advice; the top two things I took away to help us immediately in making decisions were: 1) Keep Ryan in school until 21 – he walks at graduation and the school then holds his diploma for three years while he does work-based learning and potentially a vocational or higher education program at the same time; and 2) Create a vision statement with Ryan for his future and share it with the school so we can collaborate with them on how to get there. This will ensure the 18-21 years is time well spent.

I then spoke with another mom in the area who also has an adult son with a disability, and she said the plan that stems from the vision statement should be organized into three categories and the school should provide services to help us with each: employability, independent living, and further education. What do we want for Ryan in each of these areas? What is realistic? What can stretch him? She also said to make sure employability is specific – we’ll want something meaningful and close to full-time because the school will likely consider it a success if he’s only working at age 21 eight hours a week. Hearing that gave me some palpitations.

Over winter break and into early January, I spent a lot of time on this – I looked at some sample vision statements for students transitioning to adulthood, thought about what was important to us as parents for Ryan, and of course, talked to Ryan.

Ryan: “I want a job that I like. I might want to go to college. I want to live in an apartment by myself.”

Dan and me: Ryan needs a job that uses his strengths and should definitely work as close to full time as possible (nightmare scenario: adult Ryan on the couch playing video games and watching YouTube on his iPad all day). He should have the option for some sort of post-secondary education, tbd. And we really want him to have friendships.

And so, we ended up with this vision statement: Ryan will obtain meaningful full-time (at least 30 hours a week) competitive employment in a job that uses his strengths and appeals to his interests. He will pursue the post-secondary educational opportunities (eg THINK college). He anticipates living independently (in his own apartment with supports and/or with a roommate). He will have the opportunity to develop friendships outside of the family. I also took a video of Ryan saying this in his own words.

The plan then broke down how he could get there in each of the three categories – and where I thought the school could help vs what we needed to do at home.

Under employability, I included the following headings with some ideas under each:

  • What are his strengths and interests?
  • Given his strengths and interests, what are some potential employment ideas?
  • How do we prepare him to be successful for any of these jobs above?

Under independent living, I wrote:

  • What skills and experience does Ryan need to live independently?
  • How do we increase his skills in these areas?

And under further education:

  • What education does Ryan need to be successful in his career and to prepare him to live independently?

When school resumed in January, I emailed the vision statement, plan and video to his autistic support teacher, supervisor and the teacher who manages the work-based learning program and transitions, and suggested we discuss it at the upcoming IEP meeting. I honestly was not sure what the response would be, as I was pushing for Ryan to do some things outside of the traditional program.

His teacher loved it and said after reading it, she has high expectations for him and really wants to focus on more independence. She worked with Ryan to turn it into slides so was easier for him to follow and added some ideas on courses he can take next year and content to build into his curriculum. We went through it at his IEP and she gave Dan and me very helpful tips on things we can do at home to supplement. And, an hour after the IEP, she emailed to tell us Ryan had started an Instagram account where he will attend in-school events, take photos and share. (@cardinal_domain)

The work-based learning teacher said she thought it was great, too. Ryan was initially slated to work at a local restaurant when he rotates off his current job in April; however, we’re now looking into a pet store and/or a coffee shop where he can take pictures and do their social media. We also talked about him potentially attending a tech school for pet care or culinary arts during his senior year as part of his curriculum.

It feels good to finally be organized and not feel as paralyzed anymore when thinking about the boys’ futures. Of course, having the vision statement and plan and identifying a handful of colleges and a financial planner are only very small first steps. But it’s like the title of my blog – tiny giant steps. We took a few this month. The mountain is still there, but there’s a path to follow as we continue the journey and take the rest.

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.”