I came across this posting from the CafeMom blog, under the heading "Special Needs Living: The Cost of Living With Autism". It's authored by their guest blogger Katie Olson (aurorabunny), mom to 3-year-old Brody, who has autism. The intro says: On a weekly basis, Katie shares the ongoing struggles and triumphs that often come with parenting a child with special needs. Today, she talks about how incredibly expensive raising an autistic child is, and why some parents have no choice but to work -- a lot.
"When my son Brody was first diagnosed with autism several years ago, I was absolutely sure that staying at home with him was the right thing to do. This is the case for many children with autism; one parent (statistically, it's usually mom) quits working in order to have the time necessary to become researcher, advocate, in-home therapist, etc. to their child with special needs.This plan went along wonderfully until we ran out of money, which isn't an easy thing to deal with when you're paying over $2,500 per month to different therapists. Add in all of our other expenses (ya know, like rent, food, all of that stuff you need to live) and all of a sudden my plan to stay home with Brody wasn't exactly an option anymore.A recent Harvard study estimated the cost of raising an autistic child to be $3.2 million (as opposed to the $290,000 it costs to raise a neurotypical child). Despite this, I'm amazed at the attitudes that my husband and I encounter as parents of a special needs child who also both have to work. I've started my own business within the past year, and as anyone who has done that probably knows, that means paying a lot of dues (16-hour days and 7-day work weeks). I didn't exactly expect anyone to throw me a parade for working so hard to try to earn money for my family, but I guess I also didn't anticipate the attitude among both professionals and other parents that I'm doing my child a disservice and my place should be one of a full-time therapist, not a breadwinner.I find myself answering so many questions with: "Well, I'm working really long days right now ..." and seeing the immediate disapproval of some people. Although that answer should clear up lots of questions that get thrown at me on a daily basis -- "Have you considered a potty party where you move into the bathroom for four days?" and "Are you making sure to work on these letter sounds every 10 minutes?" -- I have to confess that I'm starting to want to strangle people on occasion. Staying home with your child is WONDERFUL if you can afford to do it. Not everyone can.I would love to know why some people expect mothers of children with disabilities to be Super Moms who can bring home the bacon, fry it up in a pan, and still squeeze in eight hours per day of therapy with our children. My son is the most important thing in my world; paying for the therapies he needs is important too. Also on that list of "important stuff" is a roof over our heads and food to eat. I wish people would realize this and ditch the myth that moms of children with disabilities are superheros who can accomplish 24 hours' worth of tasks in a single bound.In the meantime, I guess I'll just keep plugging away and having secret fantasies about swapping lives (if only for a day) with the people who just don't understand why I don't have four straight days to spend with my kid on the freakin' toilet."
To which I would add that actually, we are damned if we do, damned if we don't.
Stay-at-home mothers like myself are also subject to criticism and disdain. First, we get the "What do you do?" question that every woman is posed. The response: "I'm a stay-at-homer" never wins us any kudos.
Second, even stay-at-homers have other obligations, often other children, or part-time activities from the home, which whittle away at the time we devote to our disabled children. The upshot is that we find ourselves subject to the same "tsk, tsk"s when we fall short of everybody else's unrealistic expectations of us.
Back at CafeMom, CafeJenn wrote correctly: "People need to mind their own business."
But many of the meddlers are professionals whom we encounter in the course of caring for our children (doctors, therapists, teachers) who feel entitled, or even obliged, to meddle and condescend.