I’m an Underemployed Special Needs Mom

I’m an Underemployed Special Needs Mom July 25, 2018


On a wintry day in 2016, I sat in my office on a phone call with my boss. A part of me had known this conversation was coming. I could tell in subtle jabs at my inability to “focus” that my time with the company was coming to an end. Over the course of 12 years (with that company) and 16 years in total, I had dedicated my life to sales. My passion for helping people was what drove my success. I worked with products that I knew would be life-changing for my clients. 

However, after three years of raising my son, who had disabilities and complex health issues, my ability to multi-task had disappeared. I had attempted to hang on during those years. Each day I tried my best to compartmentalize the stress of raising my son while working. My days were always maxed out. I managed work deadlines, needs from his doctors, paperwork for the county, and managing our in-home staff that cared for our son.

The tightrope I navigated in the early days with such ease became a thin piece of string. I was falling fast toward the concrete.

Nothing dramatic happened the day I decided to quit my job. I knew the company was tired of my distracted work. They had grown tired of all the unplanned time off. My lack of focus on my calls was apparent in reviews. As my husband walked through the back door, I told him I quit my job.

Our family became a single income family. Our bills and financial commitments exceeded my husband’s income. Through some careful planning and help from friends and family, we were able to reduce our debt. We learned to do more with less.

I remember looking at my life at the time, and I wondered how a college educated, career mom had become unemployed. This was never a part of the plan for our family. I had always intended to juggle work and being a parent. Having a career was a massive part of my identity and self-esteem. In one single day, my self-esteem and self-worth crumbled to the floor.

I found myself with little to no identity.

Over the past 2.5 years, many people have broached the topic of my employment. People know how important having a job and contributing to society is to me. More often than not I am unable to answer their question. The truth is my son has 12 doctors, weekly therapy, and he needs a lot of monitoring. Unless a miracle happens, there is no way for me to return to a traditional 9-5 job. 

During this time I focused on my son and his needs.  I lost complete sense of who I was before his birth. I had no interests, no hobbies, and no time for myself. My life became overwhelmed by the needs of his care.  I had very little support from the community around us.

We tried to assimilate into our community. However, his health was always prohibitive of making and maintaining friendships. As his health declined, we received word from his county worker that he qualified for in-home nursing.

In January of 2018, after two years of unemployment and being my son’s sole caretaker, we welcomed nurses into our home. They picked up the slack and managed his care. I had time to start thinking about my next steps. Finally, I had the support I had desperately needed for him. However, I still had no idea how I was going to get back into the workforce.

Through the kindness of one of our nurses, I have presented the opportunity to go back into coaching. I applied for the position and got the job. For the first time in 2 years, I am going to be working. The job is seasonal, but it is a start in the right direction. 

I’m incredibly grateful for this opportunity. However, I am a college educated woman, and part-time work means I’m underemployed.  The only reason I took this job was that the hours fit when my son had nurses. I can schedule his appointments around team practices.

As I approach my 40th birthday this year, I realize just how under-employed I am. My son’s health has prevented me from contributing to the workforce. I know I am helping my son by being at home. However, I know that I have skills and talents that employers can use. As I have gotten to know parents in the community of children with disabilities, the number one issue is how to remain employed while caring for our kids.

Many of us were forced to quit lucrative positions. Most of us have been unable to find work that will fit our child’s schedule. Our children spend so much time at appointments, in the hospital, or at home unwell that we wouldn’t be able to commit to daily employment.

If we do work most of us use our paid time off solely for caring for our child. Many of us exceed what employers offer for time off. Families all over the United States utilize the Family Medical Leave Act to take off unpaid time to care for their sick relative. We lose income because our employers aren’t flexible, or don’t offer enough time off for us to manage the needs of our children.

There is a pocket of parents just like me that want to work but can’t due to the needs of their children. We are forced to sacrifice income that could improve our lives. We all learn to do without the luxuries of life. I rarely complain about my employment status. I understand the critical role I play in my child’s life. Yet, on the tough days, I still feel slightly jaded that I couldn’t do it all.

I miss working. However, as long as our society values profit over work-life balance I’m afraid more families like mine will have a parent that is underemployed or unemployed. 

The next time someone asks me why I don’t work or if I will return to work, I think my new answer will be “when corporations value people over profit.”

A world that we may never experience in my lifetime.

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  • This is me, 100%. I have a masters degree and I work in direct sales because its the only way I can make an income on my time. I used to place more of my worth in how great of an employee I was/how much money I made. This experience has forced me to find my worth and myself elsewhere. I sometimes wish I could work more and contribute more to our income, but no one will take care of my son like I do.

  • I really enjoyed reading this. It was so relatable it gave me goosebumps and I’m very early days with just a 10 month old. Thank you for sharing and writing so well.

    I’ve just published a blog about the 5 ways parenting a special needs baby changes your life and “can I go back to work?” was one of my points. This blog really expanded on that. xx

  • Katherine Paulson

    Thank you for reading! Good luck with your writing!

  • Jim Jones

    Just a thought. Borrow these from your library (or buy them on eBay etc.):

    Howard L. Shenson’s book, “How to Develop and Promote Successful Seminars and Workshops”

    Robert L. Jolles book, “How to Run Seminars and Workshops: Presentation Skills for Consultants, Trainers, Teachers, and Salespeople”

    Maybe there’s a possible idea there. The good news is there could quite a lot of money for a lot less hours. The bad news is once you commit your cannot back out short of contracting plague. Alternatively, maybe you could be the planner person for someone else as speaker.

    Hope it helps.

  • Thank you so much for the tips! I will take a peak at them online.

  • Denie Sidney

    This is MY STORY. I have a master’s degree and I have not worked in 3 years with no hopes of re-entering the workforce ANYTIME SOON.