The last almost 10 years of my work life have been mostly wonderful. I loved my job. I worked at a nonprofit that was doing great things. Since I have a son with autism, I really did feel like what I was doing was making a difference. But Friday, February 18th is my last day at Autism Connection of PA.
Just like with everything, Covid changed the game at work. I wasn’t able to plan in person events, and that was difficult. I always loved the interaction with other families. I started working from home, which for me was awesome, but I also really got a look at my family’s needs. My son with autism is almost 16. He’s at the age where our IEP meetings center on transition out of school, and to be frank, there are little options for him. I started to worry if I was putting enough time into him, his education, and his future. I work so hard at my job for others living with autism, but I felt like I didn’t give the same attention to the home front. I also have a younger son without a diagnosis. As he gets older, he wants to be involved in more and more things. The pull of work and family felt like it was getting to be too much.
I knew a change needed to happen, but change is difficult. How could I untangle myself from a job that I liked, was so connected to who I was, and had the resources my family needed? On the flip side, living and working with autism was mentally hard for me. Everyone talks about work/life balance. While I understand that’s a struggle for a lot of people, I didn’t have that at all. Autism was work and life. I had a lot of heart to hearts with my husband about how we could remedy this situation.
The conclusion we came to was that I needed a break. I needed to be able to stay home with the kids with no distractions. I had been under the impression that I had everything handled – work, home, family – simply because I was able to work from home, but I didn’t. Everyday was the same rotation of school drop off, work (which included monitoring all of our communication channels, triaging emergencies coming in, teaching webinars and hosting meetings), laundry, school pick up, dinner, bath time, bedtime, and repeat. I was going through the motions, and no one was getting the best version of me.
I realize that not every family is in the position to have a parent home full time, and I totally acknowledge my privilege there. It’s not all rainbows and butterflies because to be able to do this, my husband has taken a job that involves traveling, requiring me to be the sole caretaker for most of the week. I also know this is a decision a lot of special needs families have to face. So many parents cannot work because of their child’s needs, or have to take jobs that are low paying or part time to have flexibility. You never know when the phone call is coming that your child is sick, had a Covid exposure, broke their foot while stimming and needs to go to the ER (that actually happened to us), and you need to hightail it to school for an early pick up. My son with autism sees a long list of specialists. Those appointments take up time, during the school and work day. Then there’s the constant dance of will we go to virtual learning? Is that sniffle Covid? My son is nonverbal, has he lost his sense of taste and/or smell? It’s a lot and the mental exhaustion is real.
So I write this as a woman and mom who has been working in some capacity since the age of 16 (I begrudgingly admit that I am now 42). My only extended time off has been for 2 maternity leaves. I’m just as nervous to start not working, as I would be if I were starting a new job. I’m also excited and happy to have this opportunity to really be present for my family. Most of all, I feel fortunate that an organization like Autism Connection of PA is here, so when I do need help with my son, it is there.