Published on Mommy Tracked (http://www.mommytracked.com)

Special Work Needs.

As parents who work from home while their children are present know, the juggling act can be precarious. I’ve done the standard “lock the bathroom door behind me to conduct a conference call.” I’ve also done the “crouch in the back of my van while my son attends occupational therapy.” Even “neurotypical” kids have trouble being quiet while Mom is on the phone; but this is more of a challenge for a child who makes funny noises, screeches, or panics easily.


Although my son is doing very well now, we still get the occasional call from the office about some sort of behavioral infraction that requires immediate attention. I must drop everything. Even a routine IEP meeting requires paperwork ahead of time and is held during the school day. Although my son is not currently in outside therapy, when he was younger we drove from appointment to appointment, some 45-60 minutes away from our home. This is not conducive to the typical working day.


One memorable project I had in the midst of trying to find a new Kindergarten for my son involved a seemingly sensitive woman who always wanted some friendly chit-chat. Her business catered to a different type of special need, so I thought we had something in common. One afternoon my office called me on my cell phone. The client had phoned me and received my voicemail. She panicked because she wanted me Right. This. Instant. so she called the receptionist to track me down. She begged me to give her my cell phone number so I could always be there for her questions.


I refused.


By way of explanation, I made a big mistake that I’m willing to bet many working females do – I chose to reveal more about myself than I should have.


At the time, my son was home with me. We went to multiple appointments for therapy and for evaluation. We jumped through hoops to hopefully get him enrolled in another Kindergarten while also addressing the various behaviors preventing him from being comfortable or accepted in class. My top priority had to be my son. Since doctor’s offices, regional centers, and medical evaluation clinics were open only during “typical business hours,” those were the busiest times for the Get My Son Into Kindergarten quest.


I told my client that my working hours are unpredictable. I told her I have an autistic son, so my attention needed to be divided at times. I told her if I wasn’t around in the afternoon, I’d be around in the evening. I told her that I usually worked at night. I told her that even if I didn’t answer an email immediately, I would answer it by the next business day.


I wanted to reassure her that although my hours aren’t traditional, the number of hours I put in during the day is still the same (and many times more!) than a "traditional worker." I wanted to emphasize that I take my responsibilities seriously.


She didn’t hear what I thought I was explaining – instead, she heard “I stay at home with my son, so I’m around all the time! I work at night, so if you email me at 11:50pm I will respond by 11:51pm! I am at your beck and call because I am always working!” I think she believed that an autistic child is a lump in the corner. Wrong.

It was a mistake to tell her that my hours vary. And yet I don’t want to deceive a client if they expect me to be available during the entire business day. To them, I'm never around. To me, I'm always on call.


Unfortunately, if a client finds out I work "after hours" the expectation is that all work will be completed during those hours. Clients are angry if their email from midnight isn't answered by 6am the next day. I once received an urgent email at 5am on a Sunday with a "due date" of a mere two hours later, at 7am. As if that weren't bad enough, I am on the west coast and the client on the east, so the email came in at 2am with a "due date" of 5am. I was asleep.


Unfortunately, I cannot have set hours. My son’s needs and those of my family are unpredictable. If a client asks if I’m “around this weekend” I don’t know how to respond. Whether I’m on “vacation” or at home, my computer is close at hand, but my ability to take the time to open the computer may vary.


More Magazine’s rules for working from home [1] are laughable to me. The reason I work from home is that my hours are unpredictable, so setting specific office times isn’t possible. Separating “personal” and “office” boundaries is impossible – as is a designated office space. After all, if I can catch 20 minutes of work while I’m awaiting an IEP meeting, then my “workspace” will be the bench outside the office door. If the postman brings me a huge packet of paperwork that must be completed by the end of the business week to maintain my son’s “eligibility” for various services, then I must do that paperwork rather than taking on paid work. (This isn’t trivial. These forms can take 3-5 hours or more to complete.) If the school calls because my son had a behavioral infraction, that means I must meet with the teacher, not with a client.


As more children are diagnosed with special needs, more parents will take on the roles of secretary of paperwork, chauffeur to therapy, and designated meeting-taker with a variety of different doctors, therapists, teachers, and gate-keepers. Unfortunately, these roles take away from the paid ones that might be part of the parent’s identity and usually a necessity to pay for all the therapy and extra costs associated with having a child whose needs are not covered by health insurance.




I wrote this to give another side to the typical “working parents” story. There are many different types of working parents, whether in an office, at home, or some combination of the two - including in the back of a van. The traditional “one office space” with set office hours is increasingly rarer, especially for families with special-needs kids. Unfortunately, these "flexible" working situations actually increase stress, which isn't good given there is already stress about the child's development and future! I blog at The Karianna Spectum [2].


Next Up: Special Social Needs [2]
Previously: Special Childcare Needs [2]

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