Working Parents and Kids with Special Needs
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Are you the parent of a child with special needs? How has that affected your career — and your family? Editor Kate Antoniades weighs in…
Being a parent of a child with special needs — whether that means congenital heart problems, or life-threatening food allergies, or autism spectrum disorder — often means “more.” More doctor’s appointments. More health insurance hassles. More money spent. More meetings with teachers and school psychologists, and more situations where you must advocate for your child. More research into treatments, local resources, summer programs, schools, group homes, etc. — and always more paperwork to fill out. Lots of paperwork.
Depending on the severity of a child’s disability or disease, some parents are forced to quit their jobs or reduce their hours. When this isn’t necessary (or simply not practical – e.g., for health insurance reasons), a employer who’s flexible can make a huge difference. You might find yourself frequently needing time off due to medical appointments; meetings about your child’s therapies or surgeries or medications; and just caring for your child at home, perhaps after surgery or after a setback, for example.
It really helps to have a boss who can understand that you’d prefer not to miss a day at the office unexpectedly but your regular babysitter is sick and the kind of specialized/experienced caregiver your child requires prevents you from simply hiring any old babysitter.
(And yes, of course, it’s not all hospitals and stress and exhaustion for parents of kids with special needs; the Italy vs. Holland metaphor is one well-known perspective. In many cases, at least, there are services arranged, goals achieved, progress made, and treatments that help. There is laughter, and there are birthday parties, and hugs, and lots of love.)
If your son or daughter has special needs, how do you decide how much information to share with coworkers? What questions have you been asked? What do you wish people knew about your child, or about caring for him or her?
2021 updated images (field of tulips) via Stencil. Originally pictured: Dutch tulip fields blossoming, originally uploaded to Flickr by peter hessels.
How timely. I was actually thinking of posting about this on the open thread today. My son has a minor disability that isn’t huge in the grand scheme of things but qualifies him for twice weekly therapies via early intervention and requires a decent amount of specialist visits. Thankfully one of the therapies is at home and the nanny can bring him to some appointments but it’s just so much to coordinate. Thankfully I have a relatively flexible schedule and generous vacation time otherwise I don’t know how I could keep up.
Regular poster, anon today. My child also has [what we consider to be] a minor disability, and we are now in the process of getting all the paperwork filled out for school. He is severely hearing impared in one ear and moderately impared in the other so he wears a hearing aid in the severe ear.
My coworkers know about it, because we’ve tried to normalize it as much as possible for my son and his classmates, and for us part of that is talking about it like its no big deal. Some of his classmates have asked about it, and the general answer we give is “some people wear glasses to help him see, Kiddo wears a hearing aid to help him hear”.
But there is actually a lot more to it than that for us. Because apparently a pretty much no insurance plans cover hearing aids – for kids, or for anyone else, so that’s a big chunk of change out of our pockets. And although his hearing loss if fairly severe, when he was first diagnosed he wasn’t deaf “enough” to officially qualify for services in our state at public schools (that has changed in the last year or two). So now we are in the process of doing all the official 504 paperwork so the schools can give him special accommodations during standardized testing, and formalizing the equipment and support the district has to provide my son. Which they have been doing all along, just not in a formalized way.
But one thing really put a major spin on this for us, and that was when we were first getting the diagnosis (just before Kiddo was starting kindergarten) one of the tests we had to do was an MRI or CAT scan to rule out that the hearing loss wasn’t related to a brain tumor. That definitely swung our perspective quickly from “this is life changing” to “this is life altering but at least it isn’t life threatening”.
The main way this has impacted my career is that I clung onto a job that was moderately family friendly for too long, because I couldn’t risk going without health insurance – because this is definitely a pre-existing condition that would disqualify Kiddo from most private insurance plans. My jobs have been somewhat flexible about this time-wise, but I usually don’t go into too many specifics other than “I have to go to a meeting a kid’s school” or “I have to take Kiddo to an appointment”. And the meetings at school, ugh. Everything has to be in a meeting in the middle of my day in order to formally all sign together – we can’t just have them send home a form and we sign it and send it back.
How timely for me, as well! We have a 2 month old in the Nicu that we won’t be bringing home until he’s 6 months old. (He has a surgery to repair an unconnected esophagus that we knew before his birth would have to happen). While it seems relatively straightforward that his repair is a cure, it actually comes with a host of unknowns – oral aversion, GERD, reflux, choking, etc. He’s also a preemie so his immune system won’t exactly be up to snuff. My employer is great and has allowed me to work part time from home instead of taking traditional maternity leave so that I can extend my paid leave as long as possible for the extra few months, but I’m having a hard time thinking about getting back home after the surgery and jumping straight into work. My employer definitely is flexible, but I have a tremendous sense of guilt that they have to make these accommodations for me. Has anyone had a similar experience?