There is no backup plan when you have a child with profound needs, and no one is coming to give you a break — even a break to be a competent employee.
I’ve questioned whether I should quit working and focus solely on my 19-year-old son Skyler’s needs; however, the minute I pose the question, I quickly know that it is NOT what would make me happy nor what I want, not to mention, without my income, our current lifestyle would be drastically reduced. I cannot imagine a life where my only identity is Skyler’s caregiver and guardian.
I’m not asking for the moon. Not fancy spa days and vacations but simply to remain employed while also serving as an autism caregiver. Can these two coexist? For many families, the answer is no. Research is clear that autism parents, particularly mothers, routinely sacrifice jobs and careers to attend full-time to their children’s extreme needs. How cruel that an extremely expensive condition like severe autism also means the plummeting of the parents’ income.
I’m fortunate to have a job that is accommodating, with an employer that allows flexibility when I need it, but my ability to hold on is challenged nearly every day. Last week was hard but typical. Skyler woke up at 4:30 a.m. on a morning when I absolutely needed him to stick to the schedule. I was flying solo for a few days while my husband was out of town, and I had significant work obligations —obligations that required that I shower, devote some energy to my hair and makeup, and ditch the traditional virtual-work outfit of yoga pants for acceptable business attire.
When I opened his bedroom door, I found that his internal dam had burst during the early morning hours and caused his pull-up, jammies, and bed to be soaked through. I quickly stripped his sheets, quietly cleaned him up, and encouraged him to go back to sleep for a few hours. But then I heard the familiar sound of Skyler slamming his open hand against his bedroom wall — sleeping was not on his radar. The sound of Skyler’s banging continued to rattle the house and permeate the shower tiles like a timer increasingly insisting that I hurry up. I got dressed and with wet hair hanging down my back, proceeded to prepare his breakfast. Then he refused to sit or take a single bite. One of Skyler’s quirks is that he be fed within moments of waking or he loses interest. I put him back in his room so I could try to get ready for work, and the incessant pounding resumed.
I stood in front of the bathroom mirror, staring at my reflection as the tears began to seep out of the corner of my eyes. For 19 years this has been my reality, needing to work but feeling like I let him down because I have a job. But also feeling the severe stress that severe autism has placed on my career. We must juggle so much more than most people, playing the role of employee, extreme parent, chef, chauffeur, laundromat operator, calendar keeper, and therapist — all on very limited sleep. Autism motherhood is a challenging, permanent job that requires us to run in multiple directions simultaneously. I would wave the white flag if I could, but I can’t.
When my kids were young, I was given some advice: Cherish the messes, crazy schedules, and chaos brought on by your kids because it won’t last long. You’ll miss those moments when they grow up and leave the nest. But no, Skyler is now an adult and will never live independently, and the messes and chaos will never end.
Envisioning the future, Skyler in his late 20s and 30s still waking up well before the sunrise along with his requirement for continued assistance with feeding, bathing and dressing are tough concepts to grasp, even for a mom who prides herself on holding everything together.
I hope and pray for parents to have the freedom to retain their jobs, but this requires realistic options for caregivers who either want or need to work. Caregivers are valuable assets and valuable employees: we can multitask like no one else, we can switch gears with zero preparation, and we are hard workers. We don’t know what breaks are, and we are used to going full speed for days on end. But to get there we need help – programs for our kids, appropriate medical care, in-home services, and flexible work arrangements.
And all that requires #AuthenticAwareness of severe autism.
*As shared by National Council on Severe Autism 4/26/22