Updated: Jun 19
Now that 2021 is over, one of the most trying years for our family (and I’m sure for many other’s too), I wonder, what should we do differently next year?
A question I regularly ask myself is, should we both continue to work full-time? What is the cost/benefit to the family? I know many parents supporting children with developmental delays have a difficult time managing a job while providing the extra care their children need, while some have no choice but to work.
Our daughter just began walking, at two and half years old. For two and a half years, we were effectively caring for an “infant.” For some, this period lasts indefinitely. Our journeys, as disability parents, are not the same as most other parents, or even the same as each other’s. We all must evaluate what is best for our family on a regular basis and adjust accordingly. For us, we consider various items, including weighing the costs against the benefits and consider tweaking work arrangements when needed.
Parent salary (and benefits) versus childcare cost. This one is pretty simple. Does it cost more to pay for childcare than one parent’s salary? If a parent makes less than a nanny’s rate, day care cost, etc., then it usually makes sense for the parent with the lower salary to take over childcare, at least temporarily.
Because excessive medical costs are such a huge consideration for special needs' parents, parents should also figure out whose insurance is best (lowest premiums, deductible, and out-of-pocket maximum), and it might make the most sense for that spouse to stay employed to keep the family's benefits.
Review your salaries, insurance coverage options, and medical expenses to figure out if it makes sense for one of you to stop (or start) working.
Cost/benefit analysis. My husband was is Big Tech and co-founded a start-up, shortly after our daughter was born. He is paid mostly in shares that have no current value but could have a large future value. When he joined the start-up, I was working at a mid-size law firm.
We budgeted everything out, and even though things would be tight, we managed by letting go of our nanny and hiring an au pair. Around this time, our daughter started to show developmental delays. The au pair program was not working for our daughter (she wasn’t hitting her milestones and was becoming more and more delayed).
I knew I needed to go back to Big Law to bump up my salary, so my husband could continue at his start-up, and we could hire a top quality nanny. After we hired a new nanny, our daughter’s development sky-rocketed. She started to learn things so quickly. She got stronger, she started to crawl with her belly off the floor, babbling, then baby signing. I made a sacrifice to put in major hours and shoulder Big Law stress again, in order to hire quality childcare for our daughter.
This decision came with the added perk of stellar health insurance that covers her PT, OT, ST, and hippotherapy. Her care team is comprised of nearly 15 specialized medical doctors across the country, and she just had two $80,000 cataract removal surgeries - all of it nearly 100% covered by our insurance. On top of it all, she attends music classes and seasonal swim lessons (and soon ballet lessons).
For us, this was the right decision at the time. I was not trained to provide her the care she needed, and I needed a job to get her the top therapies and care so that she would have the best chance at independence and a joyful life.
Do what needs to be done. During COVID, Regional Center (California’s Early Intervention Program) went fully virtual. We could see our daughter’s development suffering, and we knew we needed to find in-person services.
We were also in great need of family support. So, we made the very difficult decision to leave California and move closer to my family in Nevada. We were both working remotely and were able to keep our jobs. Within six months, our daughter was walking. But eventually, I was the one who needed more help.
Re-Evaluate Regularly. A few months after moving to Nevada, my husband’s company required him to fly to Los Angeles weekly for work. Flying each week was extremely difficult on me. Managing solo childcare in the mornings and evenings with my 24/7 work demands was impossible, so we decided that either my husband would (1) have to decrease his trips or (2) find another job. He negotiated flying less frequently, and I started to gain back my sanity.
I still struggle with working full-time (emotionally and physically). My daughter is thriving, but I am missing spending time with her and regularly checking in with her therapists. We are currently in the process of re-evaluating whether a more flexible, part-time, schedule might be more feasible for me (and better for all of us) at least until her public preschool program starts, and how much longer we can continue to live that "start-up life."
It’s an ever-evolving process.