Sacrifice, Parenthood and Autism: It's All in How You Look at It!
Of course, the word "sacrifice" is emotionally loaded - because it implies giving up something desireable for something less desireable. For many parents with autistic children, the word is absolutely appropriate: they have intentionally given up financial peace of mind, careers, even marriages - all for the sake of providing more and better for their child with autism.
For others, though, it's all in how you look at it.
We have changed our lives in many ways, at least in part because our son has autism. We've changed our career paths, our educational choices, even our location - and autism was, to some degree, behind all of those decisions. But the truth is that those decisions also reflected our own values and preferences. We LIKE the idea of being self-employed (which also gives us the flexiblity to homeschool our child with autism). We LIKE the place we moved to (which also gives us a richer and more flexible homeschool environment). We LIKE writing and making videos about autism (which became an interest strictly because of our son).
Of course, had we stuck with "day jobs" and public school, at least in theory, we'd have more disposable dollars, more time to ourselves, and fewer details to manage. If our son were NOT autistic we'd probably have fit into our suburban community more neatly, and felt less need to make a move.
But from our point of view, the decisions were not sacrificial - though they were life-changing. In part, I know, that's because we had the resources to make choices for ourselves and our son, rather than having those choices imposed upon us. But in part, too, it's because we enjoy making the kinds of changes that allow us to become more fully ourselves.
To what degree are the changes you've made actually "sacrificial?" In what ways have they been positive? And how would you differentiate between "sacrifice" and "change?"
Comments
“making the kinds of changes that allow us to become more fully ourselves”—
that statement says a lot for me in my case, Lisa! Thank you for it.
Kristina Chew
autismvox.com
I have three sons only two of them are autistic. Nothing that I do for any of my sons is a sacrifice in my eyes. Your life changes forever the day you have your first baby no matter what. Anyone who thinks otherwise is wrong. Sadly to day I feel that we live in a ‘must have it all’ society and many of our children suffer because of this. People have always been more important to me than possessions. When faced with the choice of accepting a brilliant job opportunity or giving it all up to stay at home to educate my two sons, because school was just not meeting their needs, I did not even have to think about it. My path sure did change but what I have discovered following my new path has made it all worthwhile and more.
This year my eldest none autistic son has had a terrible year with his health, and it has really brought it home to me that your kids are your kids are your kids. Autism or not you worry about them, do the best you can for them and are there for them because that is what parents do.
My Dad who is no longer with me used to say ‘If you are going to do something do it because you want to and not because you think you should. If you do it because you want to you will gain much more from the experience’ He was right.
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.
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.
The idea of sacrifice is ridiculous. Having children is a sacrifice, if you look at the world that way. I’m sacrificing all of that time I could have spent indulging myself?! When I chose to become a mom and spent years on infertility treatments, never once would I have said it was a sacrifice. It was what I wanted. When I found out my son had PDD-NOS, it wasn’t all about me. “O woe is me! I’ll have to give up things for my kids? What do you mean?!” That’s a load of crap. Being a mom to my beautiful boys isn’t a sacrifice—it is an adventure!
Yes, of course every choice involves “sacrifice”, and who knows what would be different if not for this, but (and all of this is about me and not the wonderful individuality of my autistic kid)I have sacrificed a lot, not totally because my son has autism, but as part of a combination. It’s a fact that 70% percent of our marriages fail compared with 50% in typical households. The stress is greatly increased. I look and feel older than my older sister because of the stress, and my marriage may soon be part of the 20% excess. I might just be one of those people who do not handle this level of stress + do not have quite the energy to deal with it all despite my best efforts. I miss the reciprocity with my son. I love him more than anything else in my life. I wouldn’t trade him (I wouldn’t know what to do with a typical kid!) But to say that sacrifice is not involved is not true for everyone.
I was a difficult child but my parents showed me unconditional love and affection and respected me as a person, always. Now I’, 36, officially doagnosed with Asperger’s and a Mother of two boys on the Autism spectrum, I realise that my parents must’ve had it pretty hard. But they never complained and if I tolod my Mom now that she “sacrificed” something for me - I kow she’d be offended. I love my boys and recognised myself in them so to me it woul be difficult to parent non-autistic kids, anyway. We get on (most of the time) and I’m always there for them - if that’s a sacrifice - I’m making it willingly. I hate going out to pubs and clubs - too noisy and a waste of money. I don’t drink or smoke so what exactly am I sacrificing, staying at home, looking after my kids and working from home (instead of doing 9 to 5 prison sentence in a “normal” job)? Yes, it is a bout choice and it is about how you feel within yourself that makes it a “sacrifice” or not.
I have to agree with Emily in that it would be wrong to say the life changes have not been sacrificial. There have been sacrifices, but I regret nothing. Sacrifice is not, per se, a bad thing. And it is an essential ingredient to any family relationship. We sacrifice some of ourselves for our spouses. We sacrifice some of ourselves for all of our children — neurotypical and autistic alike. If we do not recognize the sacrifices for what they are, we may miss out on some of the opportunity for growth, and we might miss recognizing just how precious our relationship is with our loved one.
I realize that the difference here is mainly semantic. Some say there is no sacrifice because the joy outweighs the pain. I, on the other hand, prefer to see the joy as being a natural product of sacrifice.
That being said, I recognize that every parent who has posted here appears to have sacrificed some of themselves. Just my opinion, but any parent — of any child — who does not willingly sacrifice, is not worthy of the title.
Great article! I need that right about now. Thanks.
“The sacrifice which causes sorrow to the doer of the sacrifice is no sacrifice. Real sacrifice lightens the mind of the doer and gives him a sense of peace and joy.”
–Mohandas Karamchand Gandhi
In regards to its context and meaning in my life, “sacrifice” does not imply giving up something desirable for something less desirable — the exact opposite, actually. Although what I sacrifice does possess worth, that worth is far less valuable than what I gain in return. That’s why I do it. Otherwise, my actions would conflict with human nature. Every voluntary action, thought, or feeling is the effect of some conscious or unconscious desire for reinforcement. We never do or think anything unless it benefits us in some way (even when that benefit costs us everything). So, both types of parents — the ones who feel they lose more than they gain and the ones who feel they gain more than they lose — sacrifice to gain something more desirable in the given circumstances (regardless of their attitude).
And why the apparent hostility and shame in using the word sacrifice? Don’t you want a better life for your children because you love them? Well, what is the greatest act of love? “Sacrifice” of one’s life for another. While most parents will never experience this degree of sacrifice for their children, why not live as if you would? Some may claim such thinking “martyrs” you at the expense of your children; but in turn, such thinking “martyrs” them at the expense of those who say they sacrifice.
Remember, everything is a sacrifice of our most limited commodity — time. On the other hand, love is more precious and important than time (even though you can’t experience love in this world without time); therefore I spend every available nanosecond with my son because his existence makes me feel peaceful and joyous.
As a mother of three, one on the spectrum I don’t feel it’s a sacrifice. My children are beautiful, intelligent and hysterical. I would rather spend my time w/ them than anyone. Being a parent is an amazing miracle, Autism or not.
Also, fitting into that ” suburban life ” with Autism is now the norm. There is no where to hide from it.
I have only my son, who is autistic, and find that I am well versed in being a guiding parent because that is what I have to do… The only things I know are ‘autism’ relevant. Let’s keep this awareness up front and out there for all to learn !
In my life I would be in denial if I didn’t admit that I sacrificed more because I have a child with autism than if I didn’t. As many people pointed out, all parents worthy of the name make some sacrifices — at the very least of free time and money.
I had three kids before I had a kid with autism — I made some sacrifices for them, or if you prefer, made some choices to benefit them, but it seldom felt overwhelming, and mostly I felt positive.
However with Jalen the sacrifices were much greater! He was so wild that we very seldom got to go places as a family — something we had enjoyed doing. We live in a community that had lots of parents with kids activities, and Jalen was just so wild it was impossible to attend them without experiencing much more stress than it was worth. He would disappear within a moment, moving as far as away as possible without looking back. He would have to clear all surfaces of items, knocking them to the floor, etc. Going to the bathroom was scary when he was too big to put in a playpen or crib for safety. There were times I was very depressed about these and other things that happened as a result of his autism/mental retardation.
He’s a lot easier now. I’m homeschooling him and he’s doing a lot better. We really enjoy each other much of the time in spite of some rough moments. I now often think of him as a loving, bright spot in my life.
But when I look back at the past, I still shudder. It may not be politically correct to say so, but that part of my life was frequently horrendous. I would never want to go through that again!!!!
Cynthia
John could not have said it any better. Thank you 4 your crystal clear perspective!