A Vacation From Special-Needs Parenting

Whew! This is a amazing.

Photo by David Vives on Unsplash

After work, I drove to the Y and put on my running gear. A few minutes after Steve’s train from New York City arrived at the downtown station, he walked into the gym and greeted me with a quick kiss.

With me on the treadmill and him on the rowing machine, we burned some calories without looking at our watches or checking in with our children. Later, we whipped up a quick meal without considering opinions from picky children. As we ate mushroom couscous and turkey burgers, we chatted about the day and listened to CNN.

At the end of January, my autistic kid went away to college. In mid-March, I started a new job. My life is so much easier. I feel like I’m on vacation.

Special Needs Parenting

All parenting is tough. We sat in cheap folding chairs on the sidelines of a million soccer games for my typical kid. Together, we endured the usual teenage drama over homework, driving tests, and prom-posals. We helped him through SATs and college applications. Even when he left for college at age 18, he still needed us.

Parenting autistic kids is another level of insanity. After Ian was diagnosed with a speech delay at age 2, we got on the treadmill of therapy and doctors’ appointments. It’s been a twenty-year workout.

After school, we drove him to speech and social skill lessons, adaptive swim lessons, and reading tutors. Because he couldn’t attend the local summer camp, I had to drive him to special camps; some programs involved a daily six-hour drive back and forth.

Even when we weren’t on the road to another appointment, we were constantly trying to avoid a sensory meltdown and reduce frustrations over his communication difficulties and OCD. Later, I managed his social calendar and weekend events.

The chores were endless. I monitored his epilepsy medication and doctor’s appointments. I completed the government paperwork. I found good programs for him after high school. When he started community college last fall, I drove him back and forth to college, the gym, social groups, and more. My color-coded calendar on the fridge mapped out my chores and destinations.

Last fall, he was admitted to the spring semester at an amazing college for kids like himself. We got some financial help from various sources. At the end of January, we packed up the Subaru with his desktop computer and two duffle bags of clothes. After a long parents weekend, we waved goodbye and returned to Jersey in a much emptier car.

Suddenly, Ian managed his schedule without me. He made a color-coded schedule and used his iWatch to send him reminders. He goes to sleep on time and is early for every class.

Relief from the schedule was just one chore off my responsibility list. I didn’t have to feed him three meals a day, the college does it. I didn’t have to drive anywhere. Everything that he needs is right on the campus.

I don’t think we noticed the big difference in our lives until this week. It took us a while to stop worrying and calling him. We had to learn that he only needed help with the writing assignments; everything else he could manage independently. After one big seizure issue and a change in medication, his health issues seem to be under control again.. His grades are good. While he’s not a social butterfly, he’s blending in enough.

It’s finally hitting me — this is going to work out. Can he stay at this school next year? Seriously? Can I relax? What is that?

Down Stream Effects - Impact On the Career

My caretaking responsibilities impacted other aspects of my life. Raising special needs children has downstream effects.

Because I needed help from extended family and access to the relatively good support for disabled people in my state, I couldn’t relocate to take advantage of career opportunities.

Truthfully, I couldn’t manage a traditional job in any location. We needed one parent to handle midday IEP meetings and after-school therapy sessions. Someone needed to be home when school was over because we didn’t have childcare — existing programs don’t watch kids like mine.

Even though I had a PhD and serious work experience, I couldn’t take advantage of traditional employment. I was forced to make suboptimal career choices. I took jobs that traded prestige for a proper salary. I was massively overqualified for other jobs. I sucked up my pride to take orders from less qualified bosses. Running my own business turned into a 24/7 job.

Flexible jobs suck.

And Now

While there were definite challenges, there were also many highlights to our unique journey. We love our kid. I’m beyond proud of him and can’t wait to see him next week for the Easter holidays. I have no regrets about missing out on the suburban parent rat race. Instead, I met some wonderful people on the bleachers of the special swim classes. Every weekend was a new adventure as we took Ian on cool trips.

At the same time, we’re enjoying this break from the old routine. I feel like I’m on vacation. I’ve got an amazing new job, one that I couldn’t have handled ten years ago. Steve and I are planning a solo trip to Scotland next September.

Ian has a four-month break this summer, when we’ll find out if he can manage a part-time job at Home Depot. He’ll have to take Ubers to the gym and work because I’ll be at my job and can’t drive him around. Instead of cooking dinner regularly, I’ll pick up ready-made meals from the supermarket.

We’re never going back to our old lives.

Provided his health cooperates, Ian will continue at his college next year, where he’ll finish his AA degree in computer science. After that, we don’t know what the next steps will be. I hope he’ll find a great job and get an apartment, but there are no guarantees. In the meantime, I’m relishing this moment.

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And More!

Thanks, all, for sticking with me. Transitioning from one job to another was time-consuming, but we’re in a good spot now. Regular writing will resume soon.

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