Membership Chair, SRAI
University of Utah
My story is one of many, but as Catalyst contributors, we wanted to give a special acknowledgement to those managers, supervisors, vice-presidents (whomever you are) that are out there supporting us parents who parenting a child (or children) with disabilities while working. Many of you are allowing us the flexibility to be the best parents we can be and a professional in a field that we respect.
When my son was six years old, our world turned upside-down, yet made a bit more sense, when he was diagnosed with major depressive disorder, generalized anxiety disorder, and attention deficit hyperactivity disorder (ADHD). A year later, Autism Spectrum Disorder (ASD) was added to the list. We always knew from the time he was only weeks old that this was going to be a tough kid. Kindergarten really brought it out, though. Before we knew it, he was being explicit in how he wanted to die and asking about how to hang himself. Understandably, hearing your six-year-old express suicide and create a plan at such a young age was distressing to say the least.
Grateful for a diagnosis, we had to know what was next and were thrown into a world of counseling appointments weekly with a psychologist and weekly appointments with a psychiatrist to get the medications correct. We worked 40 miles away from home and where his school was located. His appointments were in the children’s hospital next to where I worked. Some days I would go to work, leave to get him to his appointment, back to school, and back to work – 160 miles, twice a week. This was exhausting, not to mention the emotional toll on our family. None of this was easy while we battled insurance companies for coverage, found care providers, fought for his rights at school, and still had to parent another child at home. All the while, I was fearful about losing my job or having to give it up to care for him. I loved my job and needed the benefits to care for him.
I had an incredibly flexible manager at the time this all began and through the early years for us. I was able to take work home that needed to be done to make up any lost time in the office. I could come in early and stay late. It was a light in a very dark time for our family. The support this manager was willing and able to provide kept me afloat. I felt like I was losing my son and had to fight for his life. At the same time, I wasn’t forced to lose something that partly identified me – my profession.
This was equally as hard on my husband, in different ways. Work-life balance is something that is talked about a lot in our working environment these days, but it is harder to realize in some situations. He was not given as much flexibility because he was "the dad" and moms are still seen as the primary caretakers for these issues where we live. He became the primary caretaker in the evenings while I worked to make up time and complete projects not done during the working hours. He was responsible for a lot when I had to be in bed earlier because 4:00 a.m. was my start time to get things done every day. He was also mourning the loss of what he wanted for our son.
Not every situation is as dramatic as ours, nor as easy as ours was to manage. The fact that we had support from at least one of our employers to get the care we needed for our son made the world of difference. He is now almost 16 years old. It seems he is as stable as any 15-year-old can be and actually went to his school's prom! Sure, we still have counseling and medications to manage. We have things to teach him. But, he is more in control of his behavior and emotional state than he has ever been. His down days still scare me with the highest cause of death in our state being suicide for his age group. But, we know the signs and he knows when to reach out and advocate for himself. I am successful in my career. My husband is successful in his. Without the compassion and willingness of a few managers along the way, I wouldn’t be writing to you today as an active member of SRAI.
Thank you to those than can and do make a difference every day. If you have ever wondered if your efforts matter, I am here to say that they do. You have changed lives and families. We understand that it can be hard. Work needs to be done. Equity needs to be considered. On behalf of those of us that have children in this situation, I can tell you that we take your gift and sacrifice seriously. It isn’t squandered and wasted. If anything, we become more loyal to the employers we are working with because they were always there for us when we needed them most. We have also become more “bendy-brained” with everyone else we work with because we know how much it matters when others have done it for us. All around, it can be a win-win situation.
(Note: If you or a loved one is struggling with suicidal thoughts, please call the National Suicide Hotline 1-800-273-TALK (8255).)