I am a full-time working mom, a stay-mostly-at-home mom, a caregiver, a wife, an advocate. That’s not to toot my horn or anything, it’s just what it is. And I highlight it in this post only to show what is required of a special needs parent.
I have always been a working mom. There was never a doubt in my mind that I would go crazy if I didn’t work. Prior to Z’s diagnosis I gave my all to my work. My family came second many times as I would work 60-70 hour weeks. I was good at climbing the ladder, of always looking ahead, thinking at some point I would get to a point where I was happy and could then put family first. But as I think about it, I would probably always see the next rung of the ladder as my goal.
I was managing anywhere from 40-90 people during my tenure. I loved my employees and seeing them grow. I got pleasure out of helping them on their career path. I didn’t always enjoy what I did but always saw the hard work paying off.
In hindsight, part of working so hard was an attempt at taking my mind off what was going on with Z. I knew he was different. I knew he wasn’t meeting milestones. I knew he needed help but had no idea (or desire) to get that started. I never slowed down long enough to truly look at our situation. Instead I felt like it was simply the typical working mom guilt. I just kept moving forward.
So even though we started having concerns about Z, I kept trying to be the career mom, hiding all of this since my job at the time was not family friendly. It was seen as a negative, a distraction to talk about your children or God forbid take time off for them. I was trying to work at home more to be near Z and was taking more time off for appointments and therapies. I remember vividly sitting in a meeting with my boss and the VP, getting yelled at because I had missed an important meeting and my loyalty was being questioned. I was trying my hardest not to show “weakness” by telling the real reason I missed which was because Z had had a seizure the day before and I couldn’t leave him.
In the end, I got laid off and was CRUSHED (and hurt and pissed and all the standard emotions). But the amazing part was sitting at my computer with all the unanswered emails and crazy spreadsheets and simply hitting the power button. And this HUGE weight came off my shoulders. I mean, it was immediate. I looked at my son and knew this was for him. This was meant to happen because I needed to STOP and put focus on Z. Sure, all the other emotions stayed around but I still had a purpose, an even greater one.
So I focused. We got the diagnosis (read here for all the dish on that…), we got all the programs in place, we got Z in school…
During this time, I was hunting for a new job. I went on several interviews for jobs I really didn’t want. And I ultimately made a decision. I am no longer going to put myself last. I am going to be HONEST about my needs and my struggles at home. Because you know what? I know my work ethic. I know I am a killer employee so if a company is right, they will put up with my crazy personal life.
So I had an interview. And I was honest. I came right out with what I needed. And they took a chance. And I am still there 5 1/2 years later. I work mostly remote and if there is anything at all with my son, they are flexible. They are family. It is exactly what I need right now.
So how does all of this relate to Autism? Parents of autism have to make a decision. The amount of effort and time involved in the day-to-day forces parents to change course. Their own ambitions are moved aside for a rainy day. For some families, one parent may have to leave work completely. For others, both parents need to make changes in employment. For single parents I don’t know how they do it but they do and they make it happen.
But it is hard. Hardest thing I have ever done. You’ve heard of “Working Mom Guilt” but this guilt is so much greater because you see each delay as being caused by you not being around. You hear others that “dropped everything”, researched everything, did every therapy, every diet. And now their kids are “cured of autism”. And you feel guilt, guilt, guilt at every turn. “What If” becomes your new BFF that you talk to every day. And there are many nights without sleep where you are struggling at work to keep your eyes open. And there are many conversations among coworkers that you can’t relate to (happy hour, getaway vacations, etc). And there are times I just can’t talk about everything going on and have to bring out my acting skills.
But for the first time, I am putting my family first and it is liberating. I strive every day to not take things personally and to not compare myself to others. I strive to keep envy out of my world, to keep on MY path. To focus all of my attention on making sure I am not only catering to Z’s needs but the rest of my family too.
Most days my brain goes back and forth between Z’s needs and the pile of work I have. To my other kids, to my hubby, to vacations we want, to the bills, to insurance companies, to vendors that work with Z, to the school. Most days I’m exhausted by 7pm. Some days one of these wins over another and I simply can’t juggle.
Some days I can barely put a sentence together. And some days the stone in my earring falls out and I rock that look for a week because I simply don’t have time to deal with that.
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Tilted Axis 