When I was a child, my goals were to be in the FBI, a lawyer, a famous writer, or a top executive of an organization. Never one time in my life did I tell anyone that I just wanted to be a mom or a wife. It just was not a part of my dreams or life goals. I successfully completed my college degree, and I went on to start climbing the corporate ladder when I finished at 22 years old. My life was pretty successful. I bought my first home at 25, owned a nice car, and was able to live a fairly comfortable life. It felt good to be meeting those goals and dreams. However, then I met my now husband, got married and we got pregnant within a year of being married. My plan was to still continue to work. I had been able to juggle a lot in the decade I had been in the corporate world, and I thought I could most certainly juggle a child too. Unfortunately, that was not the plan for us. After my son was diagnosed with several very serious illnesses, I was unable to meet the demands of my high pressure career and care for his very serious needs. After 3 years of doing it all, I left my employment, my large pay check, and I started my full time job of caring for my son.
I looked around and started talking to other parents in the community of children with special needs and medically fragile children and I noticed a trend. I was not the only person that was forced to make a choice between my career and my child. There were times I would sit up at night and wonder why this happens so frequently to this community. Slowly I took stock of what had gotten us to this place, and I realized just how this unique situation is incredibly incompatible with working. In fact according to a survey done by The National Survery of Children with Special Health Care Needs more than 30% of parents end up leaving their employment to care for their child. This survey was just a sample size, and based on my own experience in this community I would say that number is far greater than 30%. I spoke with other parents to find out why they left, what happened, why were they in this position, and here are the top 5 reasons I have found.
1. Lack of Daycare facilities for children with Special Needs
Daycare is about the only way any parent can work and have a child. Whether you send your child to a daycare facility, a home daycare, have a nanny or a family member watches them, someone has to be responsible for that child while you are working. For families where their child has significant needs, finding adequate care can be impossible. For children that are medically fragile, daycare can be dangerous and even life threatening due to the number of germs they are exposed to on a daily basis. Many large facilities are unable to accommodate the specific needs of children. Nannies and private home worker salaries can be financially impractical for many families. Many of us end up at home because we have no one else that can manage the complex needs of our children in a safe place. The only option for many of us is to stay home.
2. Our Children have a lot of Appointments
I have shared with numerous friends that I feel like my life is spent in a car driving to an appointment or a waiting room waiting for the appointment. Our children have multiple doctors, which often means monthly or weekly appointments to various clinics. Children with special needs often have developmental delays. Most of these children require therapy to help them gain skills they would otherwise not learn on their own. For our family, my son has 5 therapy appointments a week to help his gross and fine motor skills, speech and feeding issues. We also have more than a dozen doctors and many of them want to see him multiple times per year. We rarely go a month without a visit to the hospital or the clinic for my son, and most months we are there multiple times. Someone has to be available to take the child to the appointment, talk to the doctors, therapists and learn what is being instructed or taught by the professionals. Most of us realize early it’s hard to balance this schedule and work commitments.
3. Unexpected Emergencies Happen A Lot
Anyone that raises a child that is medically fragile or has special needs knows that emergencies happen a lot. The first few years of my son’s life, we spent a lot of time in the hospital. I missed a lot of work because my son would be in the hospital for weeks at a time, and as soon as he was out he would be unable to go back to regular daycare. As his needs have increased, even more emergencies can happen. Many children that are medically fragile have equipment they rely on to remain alive. Equipment can go faulty or break, and thus our children can require immediate help from medical professionals. My son is G-tube fed, has very poor physical stamina, and numerous illnesses that can send him in to crisis at any given time. When I was working, I used nearly all of my Paid Time Off caring for him during these emergencies.
4. All Employees are expendable
The harsh reality of working in a capitalist society with an economic system built on profit and losses is that every single employee is expendable. I remember the days when my dad would talk about how employers valued their workers and would go above and beyond for them. It seems the world we live in now, which is fast paced and ever changing, is less about worker satisfaction and more about profit and loss. When I was unable to meet the challenges and demands of my job, I was pressured almost immediately to find ways to eliminate the outside distractions in my life that were impeding my performance. Unfortunately, my outside “distraction” was my medically fragile son. There was no way I could manage his needs, his appointments and his well being and the needs of a demanding job. For 3 agonizing years, I tried to balance it all and I was very unsuccessful. I found myself a disposable commodity to them instead of a valued employee after 12 years of dedication on my part. I wish this story was isolated, but I’ve spoken to numerous people with the same story.
5. We spend a lot of time managing and organizing the Care
I hate talking on the phone. I would much rather email or text. Unfortunately, I have to be on the phone to coordinate and organize his day to day life. On a daily basis we have Medical Supplies to order, insurance claims to dispute, insurance authorizations that need approval for medical equipment or medication, therapy and doctor appointments to schedule, and doctors we need to update. If our children are in school, we have to prepare for our IEP meetings, coordinate care with the staff at the school, and ensure that our child’s needs are being properly met at school. Many children with special needs also receive state and county support. As their parents, we are in charge of filling out the mountains of paperwork, getting health records, and jumping through the bureaucratic hoops to get them services.
As you can see it’s more than a full time job caring for a child that is medically fragile or has special needs. We as parents are nurses, doctors, therapists, administrative assistants, and chauffeurs. For most of us in this world, the demands and needs of our child make working impossible and impractical. Next time someone asks me what I do for a living, I’m going to tell them I am the CEO of my son’s care.