This post may contain affiliate links and CorporetteMoms may earn commissions for purchases made through links in this post. As an Amazon Associate, I earn from qualifying purchases.
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.
This says
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.
Somewhat-nonymous says
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.
This says
I’m the anon poster from above. We are also dealing with hearing loss. It was picked up at my son’s newborn screening and was an automatic referral into early intervention. Ei is supposed to cover the cost of the hearing aid which I’m really psyched about but we are still in the early stages so we haven’t gotten it yet. There are so many appointments btwn audiology, ENT and all of the diagnostic tests (one of which takes a few hrs and I need to nurse during to help him nap) not to mention speech and physical therapy. We haven’t done an MRI yet because it would require general anesthesia at his age
This is all new to us so any advice is welcomed!
Somewhat-nonymous says
Ours was not picked up until my son’s kindergarten screening, which made us feel like the worst parents ever, and our daycare teachers feel pretty crummy as well.
I believe you are correct that EI will pay for the first set of aids, but I’m not sure about beyond that. For us, an insurance plan that allowed an HSA has been helpful, because we have $ set aside pre-tax that we can use for a hearing aid when this one dies.
I don’t have time right now to go into our whole story, but I’d be happy to talk more later. Email me at semi.nonymous @ gmail . com and we can talk more (and I’ll tell you my real name :-) ).
annony for this says
I totally identify to the ‘clinging for dear life to a job’ aspect. My job is the work from home flexible one that allows me to take my son to various specialists, multiple hour appointments, follow up visits, and surgeries. My husband pitches in when he can but I’m the first call. I know that if I didn’t have this job there would be no way in hell I could ever find another full time role this flexible, but it stinks that I feel like my job is back burned to my son’s health needs. Ah well, part of parenting I suppose.
Bri says
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?
EP-er says
Hey Bri – You are so lucky to have the flexibility for a non-traditional maternity leave! My DS was a preemie & had (unexpected) intestinal issues with multiple surgeries. It was horrible having my disability uses up before he was released from the hospital. I was able to take an additional 6 months unpaid, but I have no idea how I could concentrate on work if I had to during that time. When we had to have another emergency surgery at 9 months, work was great about taking a week off of PTO. Luckily for us, things have settled down for now. He does have hearing loss in his one ear that they found during his Kindergarten screening (just because we seem to talking about that a lot in this thread!) but not enough to qualify for services. It does mean that when he was 5 we switch from yearly ophthalmologist visits (preemie eye problems) to yearly ENT visits… but they are still manageable. I have a close friend with a son that needs various therapies 4 times a week & the only way she can seal with it reducing to a part time schedule & letting go enough to have a nanny that can take him to services weekly.