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.


I am a stay at home mom to 5 year old special needs twin boys, one of whom is autistic. I had always assumed that I would return to the work force during the elusive school years. Now I am finding that we are in the third year of school, well before many kids have even entered a classroom. I have still not returned to work.
Our days are peppered with weekly and bi-weekly visits to various specialists, including occupational therapists, speech therapists and behavioral therapists. The boys were born 9 weeks premature and have had various medical complications during their short life that has necessitated additional office visits to specialists, maintenance of medical equipment and even hospital stays. I have logged hours and hours of time to complete all of the necessary paperwork to ensure that their needs are being met by various providers and that any financial assistance available is being utilized. I have attended multiple ongoing planning meetings with county case managers, teachers and other providers. I worked as a benefits manager at a major university before I had children. I can honestly say that managing the boys’ services and our household is a thousand times more stressful, cumbersome and time consuming. I love our children dearly but I would be lying if I said that any part of this is easy.
I began reading job listings on a nearly daily basis several months ago. I am finding it increasingly discouraging. The job industry that I previously worked in does not seem to allow for part time work. When I think of a job that may fit the hours that I need, I see job listings for service professionals (cleaning, salon), retail, waitressing and call center positions. My heart just sinks to think that I could be back in a job that I was doing when I was 20 years old. I have considered freelance writing, but I am nervous about the idea of not having a steady employer. I have begun researching online periodicals such as Wall Street Journal, CNN, Working Mothers, etc. for ideas on job sources for a college educated, part time professional position. I feel as if I am at a loss and I am not sure what to do. What advice would you pass along to a parent of special needs children who is eager to enter the work force?