Not a Sacrifice: The Autism Mother Makeover
October 5, 2007 by Kristina Chew, PhD
Filed under Health
How much should parents sacrifice for their children with autism? asks autism mother Lisa Jo Rudy of About.com: Autism.
I think it would be hard for many parents, determined to leave no book/website/article/conference brochure with the words “autism treatment” in it unexamined, not to respond to that question with everything. Teaching methodologies, therapies of more sorts than there are flavors of Bertie Bott’s Every Flavor Beans, stuff (from the weighted vest to the inside-out squishy ball to the prism lenses), nutritional supplements, medicines, saunas, hyperbaric oxygen therapy chambers: Sometimes I wonder if autism parents unconsciously start to link quantity of therapies tried with their devotion, determination, and even love. Have we not all at once time or another felt judged or worse for not trying this next great thing……
As for what parents “sacrifice” to provide that myriad of things-meant-to-help: This list too gets packed, and quickly: Jobs, career, houses, college funds, retirement funds; friends, marriage, health. For myself, I prefer not to use the word “sacrifice,” as if I have made myself a martyr to the cause of Charlie. I do know that I have given up things—a certain career path, a good chunk of my salary, even–yes–at times my health—-to do my best by Charlie, and I know that I have to keep giving up things and making accommodations. 3pm and a half-hour after it remain the focus of my day: I have to get home to meet Charlie’s bus and I’ve bowed out of more than a few meetings and mumbled excuses, all in order to be there when Charlie needs me.
I guess that might sound like “sacrifice” to some, and perhaps especially if one believes that at some point in raising one’s autistic child, one ought—one deserves—to be returned to one’s former way and form of life, just as (according to the October 4th New York Times) more and more women are apparently seeking out post-pregnancy plastic surgery, in the hope of restoring a body changed by giving birth, by nursing a baby, by different habits of exercise and eating, to its pre-pregnancy state. I find such surgery a puzzling act: After having a child, one becomes different, one becomes a parent, and the change evinces itself in mindset as well as in body. I know it is not mine to judge why some might decide to nip and tuck rather than to bag clothes that no longer fit and donate them to Goodwill; why some moms feel themselves in need of a “Mom Job.”. But what I’ve learned from our past ten years with Charlie is that life with autism changes a person profoundly and, in my case, much, so much, for the better. As one father commented on the How much should parents sacrifice for their children with autism? post:
I realize now that giving myself and all my resources to my son who has autism, has been far more difficult and yet more rewarding than anything else I could have dreamed of achieving. He gave me purpose when all I really had before, were things. Most people live an entire life with just things, a very few with purpose.
I am not trying to turn back the clock in raising Charlie. The person I was then is gone, or rather transformed, made over, into (I would wish) someone less selfish and more selfless, someone more patient and accepting, someone less confident, much humbled. Someone who always knows that some one other person gets top priority: When Charlie calls “Mom, Mom,” you can bet I’m there.
And Charlie knows when I am, and where I ought to be. Tonight, as he was getting ready for bed—a certain blue polar bear fleece blanket must be spread just so, his bucket of photos must be beside the bed on the carpet, the blue laptop case Charlie appropriated from me to keep his iPod and two banged-up sets of headphones and a tennis ball and some pens and his photo calendar must be found and its treasures laid out—Charlie said “Mommy blue shirt” and went to get one of my sweaters. He wrapped his left hand in it and knelt on his bed, then suddenly ran into my room. He returned with my newest pair of shoes—black flats—and put them on his bed, and smiled and almost seemed to give me a wink at one point. After a while, he got up and brought back an old chalk-streaked pair of Mary Janes and two pairs of flipflops, said “Daddy shoes,” and came back with an old pair of Jim’s. Laughing, he lined them neatly up in two’s, jumped on his bed, and told me “good night!”.
On closer inspection I saw that the black flats—my new workshoes—were not in the line-up; I found them back in my room, ready for me to don before going to work in the morning.
Knowing that Charlie is watching me so closely reminds me of how much life with him, with autism, has given me much. And that’s the only kind of makeover I need.
I’ll call it the Autism Job.
Questions like the one Lisa Jo Rudy asks always bother me, mainly because of how it seems to imply that non-autistic children deserve less “sacrifice” from their parents than do autistic children.
If the question were simply, “How much should parents sacrifice for their children?”, I would like to think that the answer would be the same regardless of whether or not the children are autistic.
The thing about autism, though, is that it forces parents to consciously think about the ’sacrifices’ that are and will be required. We have to be more involved with our kids, and pay more attention to their needs.
Just think what our kids today might be if all parents were as aware and involved with their kids as the parents of autistics kids are.
I agree with Brett. I gave my everything to Jaysen, even before his diagnosis. I continue to do so with his diagnosis.
I think when it’s your child, your view changes. My boyfriend, who has known Jaysen for 4 years now, still does not “get” Jaysen, and is often frustrated by him. He feels that Jaysen is given too much leeway, and I’m too lax of a parent- not realizing why I’m doing what I’m doing. When I try to explain- I’m taking up for Jaysen and making excuses.
My boyfriend and I have a 9month old. He would do anything for this child. He has also stated that if it were Rylan with Autism, things would be different. Not something you want to say to a mom…
I guess what I’m trying to say is, that when it’s your child, you don’t see the “adjustments” you have to make as being disruptive to your life. They become a part of your life. Sure there are times when I miss the times I could talk on the phone for as long as I wanted, but if if it were really that important in the grand scope of things, I wouldn’t have had kids.
Hmmm. Which is the more appropriate word, “sacrifice” or “trade-off?” A “trade-off” only becomes a “sacrifice” when you assess a negative value to the end result of the trade. And I won’t do that, not to ANY portion of my life as a mother. Sure, I’ve traded a firmer, slightly smaller stomach for a softer, slightly-larger one. Why does that have to be a negative? To quote Fabienne from Pulp Fiction (when discussing her desire for a potbelly, and whether she would still be considered attractive with one), “I don’t give a damn what men find attractive. It’s unfortunate what we find pleasing to the touch and pleasing to the eye is seldom the same.”
Same goes for the other trade-offs in my life. I have less time to luxuriate over cross-word puzzles and coffee and have given up after work happy-hours and impromptu weekend getaways. I have traded that for bathtimes, costume-making, bedtime stories, preschool papers and, yes, speech therapy and IEP meetings. It is a trade-off, not a sacrifice. Has the trade always been perfect? Of course not. But all in all, I got lucky on the deal and would do it again in a heartbeat.
Yes, like Lolasmom said, it’s a trade off. I asked my father about this before having kids, and he told me that, when you are doing something you want to do, it’s a privilege, not a chore.
Kristina, you’ve said beautifully. I feel like that, too, and I beleive most parents of autistic children feel the same. I’m different now, because autism changed me, as did other things in my life so far. Who cares about sacrifices when who you are sacrificing for is the most important thing in your life and everything else is simply “less significant”.
I was going to say exactly what the first two commenters said. Once you have children, if you’re a good parent, you’re willing to sacrifice anything for their sake, regardless of them being autistic, NT, healthy or ill. That’s what my parents did, and my grandparents before them. I just put my child’s wellbeing before mine – if it’s the right thing to do, I don’t know, but that’s the way I see motherhood, I’m responsible for this beautiful life I brought into the world.
I don’t feel I have “sacrificed” anything, but I have to be careful what message I relay to others. My whole identity was my career for so long, that when people ask what I do, I often say “I quit my job.” and before I know it the words “children with disabilities” comes up and I want to kick myself. It’s like I have to prove to strangers that I was more than capable and actually really good as a project manager, but I chose to leave it. It’s my crappy self-confidence that’s talking. It is something I am really really trying to work on it. It sucks that society places more value on me as a worker than as a parent.
That was beautiful. You guys are lucky to have each other.
Before there were baby boomers, parents never asked the question of what they were willing to sacrifice (or trade off) for their children. It was the ingrained, natural thing for parents to do what was necessary for their children. Though I think that socialism always fails on a societal level, it is also perfectly suited to work on a familial level (from each according to their abilities, to each according to their needs).
Once baby boomers became parents, they were so self absorbed that it came as a shock that they would have to trade off anything. And it seems that this type of thinking has percolated down to their offspring.
So I guess, as a good baby boomer, I sometimes think of the trade offs we have made as a family. But I don’t see those things as negative. No path was set in stone for any one of us. We are on the path we are on, and I try to follow it as well as possible, and be the best person I can be today.
Joe
It just becomes a way of life.
OK, I’ll guess I’ll have to try to defend the ‘half empty’ viewpoint even though I agree that a life path should be judged on where you are and not where you could have been. Indeed you trade off soccer for speech; outings for OT. But remember, that includes all you NT children as well. You can say that it is the same trade-off for them; that they reap the same fiber strengthening rewards as we do. But to deny the sacrifice that they make today missing out on ‘normal’ activities because of the time needed to care for our autistic children and in the future when the may become the caretakers of some of our kids, there’s is a SACRIFICE (as is ours, IMHO) that needs to be recognized…
I think our perspective about parenting has changed dramatically since the early 20th century when education was made compulsory. I think for the most part, historically children were seen as extensions of the family as an economic unit. Children worked as they were able either in the house (caring for younger siblings or elders), assisting in the chores, working on the farms, being apprenticed out, working in factories. The educated were privileged but school was also another job, where you worked hard.
When the focus shifted that kids aren’t “money-makers”, what do we burden them with? Our hopes and dreams. They become status symbols and accessories, even friends.
I think it’s interesting for those of us who are privileged to discuss “sacrificing” for our children. I think of sacrifice in currencies like true love, life itself, freedom. I don’t think in terms of choosing being homebound vs a soccermom. Or having just one car. Living in a rental unit. Making separate dinners.
Those are still parts of a luxurious lifestyle.
Maybe the wages of autism will make us all rich in all—-certainly I’ve learned that you can do a lot on little.
Joe, maybe you’re not such a “good” baby boomer (meant in a complimentary way…..).
In the big scheme of things, I see myself as having gained a lot thanks to Charlie: If he were not autistic, Jim and I would have kept our jobs in the Midwest (in two different states) and life would have been harried, even more than it is now. We were only able to give those jobs up and come back to New Jersey because we thought this would be best for Charlie.
What I don’t feel “rich” at all in is something of a more mundane nature—-a little more time here and there throughout the day. I always thought I would get to a point when I would not have to tell colleagues “I have to go now.” I have some new responsbilities at work and it is apparent how my not being able to do some things (like stay for a 4pm even) could hinder my work. And it would be nice to read more books in the evenings, instead of spending them catching up on work and (yes) blogging and writing, as my afternoons are mostly spent with Charlie—walking, shopping, showing him how to vacuum, driving.
But I still do see the glass as half-full, at the very least.
I love the description of Charlie’s bedtime ritual, and particularly what he does with your sweater and the shoes.
I am totally fine with the way in which my life is dominated by my kids. My husband and I do decide against some therapies/approaches which we think would be too much for the family as a whole, but we are happy with life as it is. (although more time to read would be great!)
I apparently do well by my daughter. And she, without knowing, makes room for me. She goes happily to daycare, various lessons, playdates, and her father’s, and I work, correspond, go to the gym, read, dream, meet friends, travel. It is (still) recuperative, and I’m grateful that she’s so hungry for life that she enjoys the parts of her day that don’t involve me.
I’ve done the sacrifice bit. I would be much more careful about doing it again, even for her. I look back on the years of taking care of her father and see it as a tragedy of naivete. Not for lack of love, but because it was too much effort, self-destructive effort, without hope of solving any problems. Water poured on the sand. I wouldn’t do that again. In that regard I’m grateful to have learned the lesson relatively early in life.
this is beautiful, kristina. sign me up for the Autism Job. what makes me bristle is the view that seeks to separate being a parent of special needs kids from one of typical kids. being a parent means signing on for the job of providing for one’s child, whatever they need, as best as one can. is it sacrafice? or choice? or simply doing what needs to be done? does one sacrafice at work to push oneself to grow and do the hard parts? or is does it come with the territory of doing the job as well as one can. i would think one would WANT to be changed by parenthood. why even have a child if you want your life to stay the same as if was pre-baby. you do what you can for your child as best as you can while trying to take care of your own needs, as best as you can, hoping the experience, maybe simply called life? changes you into a more realized human being.
From the About.com blog
“I’m sorry, but anything less than that doesn’t just make you an “un-super mom,” it makes you a bad mother. ”
That’s the problem to me when it gets into the comparatives of “sacrifice”. If you are doing the best you can, because of personal capacities or specific circumstances–other children, maybe even other children with differences, aged parents with their own needs (my mother in law suffered from Alzheimer’s for several years before dying last year), spousal or monetary issues–then I believe that is what one can do.
Once we got over the initial upset of the diagnosis, what we did was what we thought that we should and could do, given some of the considerations of the effects of early intervention, and the realities that my youngest presents, etc. The concept of sacrifice never really came into it until others started bringing it up, and frankly, I wish that they had not because it made me feel that there was some kind of yardstick to be judged against, and rather than the cheering-on effect intended, it was kind of a downer.
Both of my children have changed us and how we look at the world, for the better I believe–I think that my personal preference is to savor the positives, work on the negatives and not get bogged down in concepts of sacrifice, nobility or others’ perceptions therein.
Hi – just wanted to chime in!
We have made a TON of changes to our lives because Tommy happens to be autistic – but very few have felt like “sacrifices.” In fact, my career, our location, our lifestyle – ALL have changed. But both my husband and I actively LIKE the changes we’ve made! We left the suburbs, and in fact the state where we lived – in part so we could better homeschool Tom. My husband changed his career in part so that he could be available to co-teach. I’m writing about autism on a regular basis.
But these are not sacrifices, they are life choices with which we are quite happy!
As regards the about.com blog, I wanted to highlight one commenter’s perspective on the issue of sacrifice – not because it’s MY perspective, but because I thought it made for interesting conversation. And indeed it has!
Lisa Rudy
autism.about.com
Thanks to Lisa for a thought-provoking post!
Brett writes, “The thing about autism, though, is that it forces parents to consciously think about the ’sacrifices’ that are and will be required. We have to be more involved with our kids, and pay more attention to their needs.”
I have to say I don’t think this is true. Being a mother means continual sacrifice. I think daily about the things I am not doing and am putting off — things that are not only important careerwise but essential to who I am.
The choices are made all through the day. They do not stop, and the stakes do not drop, as the child gets older. The attention is continuous and involves things like getting to know her friends and her friends’ parents; long conversations about what happens at daycare; conversations on history, ethics, math, science, current events, home economics, food; music and sports lessons and involvement in those lessons; religious attendance and instruction, and involvement in religious community; home maintenance at a level far above anything I’d bother with for myself.
As she gets older and is more autonomous, the stakes are higher, not lower, because she is able to make more serious choices with more lasting impact. The time commitment does not drop. And because there’s only so much time, this necessarily means sacrifice.
I think very consciously about what I sacrifice for my daughter, and what I’m willing to sacrifice. Saying “a good parent will sacrifice anything” — it may be true in an emergency, but when emergency is chronic, or when need is chronic, then no, I think it is not true.
Kristina, your point about 4pm events points up the need for more flexible part-time professional work and recognition of caregiving as legitimate work. Have you read Joan Williams’ _Unbending Gender_? She describes the problems nicely and proposes some sensible, if politically unrealistic, solutions. Unrealistic for now, anyway; I think eldercare will push that over the edge. The first half of the book is very crisp, cogent, measured.
Thank you for the book recommendation; I’m fortunate to have a fairly flexible full-time job.
Esp. to Lisa,
Apologies for implying that the statement about what being a “bad mother” was you–my feelings were directed at the commentary you were discussing, and that statement in particular, not your post. Sorry that I was not clear.
I’m glad you brought up the “bad mother” point, Regan. I still think that, very unconsciously, notions of being accused of being “refrigerator mothers” or just plain old bad parents hang over the heads of many of us parents of autistic children, and sometimes I thnk that not-so-dead-theory can lead to parents feeling they have to do everything—or be “bad,” incompetent, not-good-enough parents.
Kristina – This is why I posted on Lisa’s blog about the money thing. It’s just another way to denigrate parents who don’t have money to buy all the snake oils that the market can bear.
Getting a book and educating oneself is one thing. Then again, if people actually read the books they get, they will know they don’t have to spend $10K on a lawyer for an *IEP Meeting*…. @@
Sacrifice is not what we are doing. We’re just getting another certification without the credit.
Sacrifice? When they are your own children it never is. With having 6 on the spectrum we are thinking that we are: AutismRus. It’s just our lives and I guess that since we’re never been financially ‘comfortable’ the additional lack of most everything is no big deal.
We’ve found a very workable bedtime ritual. Baby Einstein DVDs. We installed one of those wall mount TV holders and they watch the DVD that we put on repeat so that it will play for hours. When they are all asleep we’ll turn it off.
Ammon will only sleep in his playpen. Sarah has an ‘object of the day’ that she takes to bed. And as long as Mary has her bottle…she’s pretty much a happy camper.
So to those who may feel you are now sacrificing… get over yourselves. Realize that you’ve been entrusted with angels sent to you direct from God.
I agree with every single comment, my only concern is that I feel I have sacrificed my relationship with my non-autistic son, whom I feel I have been neglecting, being so absorbed and devoted to my autism job. Anyway, I will work things out
,
regards from Greece,
John, AutismRus—I have to say, I like it! Feels like us here—-we “only” have Charlie, but it’s a full house, indeed.