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 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.