It's time to rename this Blog. When I first started writing it, I named it "Consumed By Autism." I have no idea why I chose to call my Blog that - maybe I just thought it sounded cool - but it closely reflected how I felt at that time. "Overwhelmed By Autism" would have been even more accurate of my state of mind up until this year. "Overwhelmed By Everything" would have nailed it, actually.
This past year I have come to the realization that all the stuff that has happened to me in my life had to happen to bring me where I am today, and that all the things that I consider the "worst" events in my life were, in fact, among the best things to happen to me. My divorce freed me. It sounds trite, but it's true.
More significantly, having a son with autism has taught me to have more patience, to see joy and beauty where it might not be immediately apparent, and to live in the moment rather than being in a constant state of panic over the future or being in a constant state of anger over what could have or should have been. When I imagine having two "typical" sons today, I know that I would still be stuck in an unhappy life, worrying about inconsequential crap, driven by having money and lots of stuff and stuck in some job or other I hate and receive no satisfaction from. You could ask me, "but what about even BEFORE that? What if you'd married someone else and had different kids? Maybe then you wouldn't have gone through any it and your life would have been easier, better."
Who knows what could have been? Why drive myself crazy even trying to go back, unravel my life, figure out where I "went wrong" and wonder what could have been done "right?" That's for the movies. I believe I needed all of it. I've noticed a lot lately people all around me who are unsatisfied. They have perfectly "normal" children, well-paying jobs with great benefits, seemingly happy marriages, cool stuff, and they still find stuff to bitch about. Without the life I've had, without having my son the way he is, I'd be one of those people. It is said that it's better to learn from other's mistakes rather than one's own, but does anyone really learn that way - REALLY, TRULY learn?
I've renamed this Blog "Autism Co-Parent." It's probably not the best title, either, but I'd like to be useful to someone and what do I have to offer? I have my experiences. My perspective. I've looked, and I haven't seen anything out there about parenting a child with autism cooperatively with an ex, so that's where I'm going to go with this Blog. I don't have all the answers, of course, but maybe, just maybe, someone COULD learn from MY mistakes.
Monday, October 13, 2008
Thursday, September 25, 2008
Jenny McCarthy has another book to sell.
Jenny McCarthy has another book to sell. Yesterday, she plugged “Mother Warriors” on Oprah’s TV show and on an evening webcast on Oprah.com. I haven’t checked the listings, but be assured that Larry King Live is next on the schedule.
One of her main messages was that mothers should not take the diagnosis and their child home and give up to despair and do nothing, but should become a “warrior” for their child and do anything it takes to “fix their kid.”
It would seem that moms with kids diagnosed with autism would hardly need reminding that they have to do everything in their power to help their children, but then there’s Joan, who wrote not too long ago to Lisa Jo Rudy at the About.com Autism site that she felt her autistic child was “a waste of human life” and that “God ruined him.” Before having her child, Joan prayed to God for kids with “no mental or social problems.” Joan needs to do whatever it takes to stop feeling sorry for herself and start taking care of the child she has, not the one she thought she’d custom-ordered. Joan probably needs a dose of Jenny’s get-off-your-butt prescription.
But there’s still something about Jenny’s message that greatly disturbs me: she seems to be telling mothers to try EVERYTHING and ANYTHING in the pursuit of “fixing their kids.” That can lead to dangerous and at the very least, crushingly expensive, desperate measures. She claims her kid, Evan, is “recovered.” Even though she will cop to having provided him with every possible therapy such as OT, PT, speech, and Behavior Modification, she’s convinced that the GFCF diet and supplements that did the trick. Her advice to others who have tried it and saw no results? Move on to the next thing! What next thing, Jenny? Chances are, anyone doing the diet is also already doing the OT, Speech, PT, ABA, etcetera. What’s left after that is the scary stuff, like chelation, hyperbaric, and exorcism.
That’s where Jenny really loses me. It’s all fine and good to tell mothers to fight for their children, but what about those fragile, vulnerable people who think just because she’s on TV and she says her kid has autism and that he’s supposedly recovered, that makes her an expert? Those moms need to remember this: Jenny McCarthy pays for all HER kid’s treatments and therapies by selling books.
One of her main messages was that mothers should not take the diagnosis and their child home and give up to despair and do nothing, but should become a “warrior” for their child and do anything it takes to “fix their kid.”
It would seem that moms with kids diagnosed with autism would hardly need reminding that they have to do everything in their power to help their children, but then there’s Joan, who wrote not too long ago to Lisa Jo Rudy at the About.com Autism site that she felt her autistic child was “a waste of human life” and that “God ruined him.” Before having her child, Joan prayed to God for kids with “no mental or social problems.” Joan needs to do whatever it takes to stop feeling sorry for herself and start taking care of the child she has, not the one she thought she’d custom-ordered. Joan probably needs a dose of Jenny’s get-off-your-butt prescription.
But there’s still something about Jenny’s message that greatly disturbs me: she seems to be telling mothers to try EVERYTHING and ANYTHING in the pursuit of “fixing their kids.” That can lead to dangerous and at the very least, crushingly expensive, desperate measures. She claims her kid, Evan, is “recovered.” Even though she will cop to having provided him with every possible therapy such as OT, PT, speech, and Behavior Modification, she’s convinced that the GFCF diet and supplements that did the trick. Her advice to others who have tried it and saw no results? Move on to the next thing! What next thing, Jenny? Chances are, anyone doing the diet is also already doing the OT, Speech, PT, ABA, etcetera. What’s left after that is the scary stuff, like chelation, hyperbaric, and exorcism.
That’s where Jenny really loses me. It’s all fine and good to tell mothers to fight for their children, but what about those fragile, vulnerable people who think just because she’s on TV and she says her kid has autism and that he’s supposedly recovered, that makes her an expert? Those moms need to remember this: Jenny McCarthy pays for all HER kid’s treatments and therapies by selling books.
Friday, September 12, 2008
Live now
I've been thinking a lot about "living in the now" after having read a few books about the subject. It makes a lot of sense to me to enjoy now, because it's the only time I can do anything about, really. We think we can do something about the future, but really what we're really doing is stuff NOW that MAY affect the future. We're not really IN the future, affecting it.
So, it makes no sense to freak out about the future. I can plan. Planning is good, but worrying never solved anything. This simple idea has changed my life. The very idea that there's a difference between planning and worrying was revolutionary to me when I first heard it. I suspect it's the same for most people.
I was once the Queen of what I call "extrapolating." I'd have a conversation - okay, argument - about money with my ex, for instance. I'd take that "conversation" and start worrying about the day my son with autism, now 11, turns 21 and is no longer in public school but will probably still need to be watched constantly, I'll no longer get child support from my ex, so I'll need more income to replace that money which I won't be able to do because if I get a full-time job, who's going to watch my son? And then there's health insurance. If I can't work fulltime, how will I get health insurance I can afford, because I'll be getting older and more of a risk, and what if I got sick, what if my ex got sick, what if neither of us could take care of my son any longer....ack! These thoughts all became a jumble of pure panic, and the scenarios I imagined for ten years into the future became more and more dire.
One day, I was "extrapolating" on the phone to my sister. She must have gotten fed up, because she interrupted me at some point and said, "Julie, you're thinking up all the BAD things that could happen. MAYBE some GOOD things will happen, too." It's crazy, literally, how that never occurred to me. I decided then and there to stop extrapolating - just STOP. It hasn't always been easy, but I'm getting better at it all the time. It's changed my life. It's changed the way I think about my son and our life, our future. Our Now.
I'm thinking of taking up "extrapolating" again, but with good things. Only with good things.
So, it makes no sense to freak out about the future. I can plan. Planning is good, but worrying never solved anything. This simple idea has changed my life. The very idea that there's a difference between planning and worrying was revolutionary to me when I first heard it. I suspect it's the same for most people.
I was once the Queen of what I call "extrapolating." I'd have a conversation - okay, argument - about money with my ex, for instance. I'd take that "conversation" and start worrying about the day my son with autism, now 11, turns 21 and is no longer in public school but will probably still need to be watched constantly, I'll no longer get child support from my ex, so I'll need more income to replace that money which I won't be able to do because if I get a full-time job, who's going to watch my son? And then there's health insurance. If I can't work fulltime, how will I get health insurance I can afford, because I'll be getting older and more of a risk, and what if I got sick, what if my ex got sick, what if neither of us could take care of my son any longer....ack! These thoughts all became a jumble of pure panic, and the scenarios I imagined for ten years into the future became more and more dire.
One day, I was "extrapolating" on the phone to my sister. She must have gotten fed up, because she interrupted me at some point and said, "Julie, you're thinking up all the BAD things that could happen. MAYBE some GOOD things will happen, too." It's crazy, literally, how that never occurred to me. I decided then and there to stop extrapolating - just STOP. It hasn't always been easy, but I'm getting better at it all the time. It's changed my life. It's changed the way I think about my son and our life, our future. Our Now.
I'm thinking of taking up "extrapolating" again, but with good things. Only with good things.
Sunday, September 7, 2008
"Colin's Fans" have a great day walking
Thanks, Friends and Family that participated in the September 7, 2008 Dylan's Run/Walk for Autism to raise money for research, support the Autism Society of Southeastern Wisconsin and to raise awareness! The event had record participation (over 2500 people!) and we are hoping when the countin's done that record funds were raised as well. Our team was called "Colin's Fans" after my son, Colin, who is eleven. The team's name is a play on words: we all are, of course, fans of Colin, and Colin is fond of fans and all other things that go "whir."
I love you all for your support!
I love you all for your support!
Thursday, August 14, 2008
The Frenetic Autism Mom
I've been doing some reading lately that has helped my little family a great deal as we work to manage life with autism and all it's challenges. The funny thing is, the book has absolutely nothing to do with autism. What have I been reading? At the risk of sounding all "new-agey " or like one of Oprah's lemmings, I'll confess that I've been reading Eckhart Tolle's " A New Earth: Awakening to Your Life's Purpose." Oprah has introduced it to the world as part of her famous book club, and has co-hosted webcast and Internet classes with the author, connecting readers of the book all over the world.
The author talks a lot about a concept that opened my eyes: "Ego." We've all heard the term "Ego," right? Remember Psych 101? Eckhart's book really delves into Ego and how it keeps us from living the life we should, the life we want. I won't go into the whole thing here - you can read the book for yourself - but basically the Ego is that "story" you're going around telling yourself about Who You Are. You identify yourself by your job title, you identify yourself by your position in a family, you identify yourself perhaps by a disability your body has.
Another author, who has written some very simliarly helpful stuff, Wayne Dyer, calls EGO "Edging God Out." Both authors consider the Ego very limiting. You and I are MORE than what we do. We are part of a entity infinitely greater and deeper than what we see on the surface, and it's very limiting to see ourselves only as what are bodies are and what we go around doing in these bodies. Dyer says that identifying ourselves this way is, in essence, disrespectful of God's plan and purpose for us.
Have I lost you yet? What does this have to do with autism? After reading about the Ego, it occurred to me that I, and a lot of other parents (particularly mothers) of children with autism, identify ourselves almost solely in relation to autism. We've become lost in the EGO of being this person who has had this situation thrust upon us. It's become everything to us. I'm calling it "Frenetic Autism Mom." I don't think it's a good thing. It certainly hasn't been a good thing for me and my family over the years.
Frenetic Autism Mom is the Warrior in the War on Autism. Frenetic Autism Mom is the Long-suffering Martyr Who Must Endure, or the Hero Who Will Cure Her Kiddo. Nobody else fully or appreciates or understands all that Frenetic Autism Mom does and has to go through in the course of a day.
So what's wrong with that? It's nerve-wracking, for one thing. I believe my son strongly feels the mood around him, and having a frantic, nervous, frenetic mom made him a nervous wreck, too.
Also, who WAS I before I became this person? Who would I be if it all suddenly went away? I'm thinking a lot of Frenetic Autism Moms would be at a complete loss of who they are if autism were suddenly erradicated. Is it REALLY all about their child, or is it about THEM? I believe it's something a lot of people really need to take an honest look at in themselves.
Since reading Tolle's book I'm working really hard at kicking Frenetic Autism Mom out of my head. She's caused us more harm than good. My son is MORE than his autism. Seeing him as "My Son With Autism" or "My Autistic Son" has colored too much of our existence for too long. Since working to see us as MORE than a Family With Autism, my son's negative behaviors have nearly disappeared. It's amazing how much better an attitude of RELAX, ACCEPT, AND ENJOY -an attitude Frenetic Autism Mom never allowed herself to have - works than psychotropics ever did.
Autism no longer "consumes" me (see the name of this Blog), and we are better off for it.
The author talks a lot about a concept that opened my eyes: "Ego." We've all heard the term "Ego," right? Remember Psych 101? Eckhart's book really delves into Ego and how it keeps us from living the life we should, the life we want. I won't go into the whole thing here - you can read the book for yourself - but basically the Ego is that "story" you're going around telling yourself about Who You Are. You identify yourself by your job title, you identify yourself by your position in a family, you identify yourself perhaps by a disability your body has.
Another author, who has written some very simliarly helpful stuff, Wayne Dyer, calls EGO "Edging God Out." Both authors consider the Ego very limiting. You and I are MORE than what we do. We are part of a entity infinitely greater and deeper than what we see on the surface, and it's very limiting to see ourselves only as what are bodies are and what we go around doing in these bodies. Dyer says that identifying ourselves this way is, in essence, disrespectful of God's plan and purpose for us.
Have I lost you yet? What does this have to do with autism? After reading about the Ego, it occurred to me that I, and a lot of other parents (particularly mothers) of children with autism, identify ourselves almost solely in relation to autism. We've become lost in the EGO of being this person who has had this situation thrust upon us. It's become everything to us. I'm calling it "Frenetic Autism Mom." I don't think it's a good thing. It certainly hasn't been a good thing for me and my family over the years.
Frenetic Autism Mom is the Warrior in the War on Autism. Frenetic Autism Mom is the Long-suffering Martyr Who Must Endure, or the Hero Who Will Cure Her Kiddo. Nobody else fully or appreciates or understands all that Frenetic Autism Mom does and has to go through in the course of a day.
So what's wrong with that? It's nerve-wracking, for one thing. I believe my son strongly feels the mood around him, and having a frantic, nervous, frenetic mom made him a nervous wreck, too.
Also, who WAS I before I became this person? Who would I be if it all suddenly went away? I'm thinking a lot of Frenetic Autism Moms would be at a complete loss of who they are if autism were suddenly erradicated. Is it REALLY all about their child, or is it about THEM? I believe it's something a lot of people really need to take an honest look at in themselves.
Since reading Tolle's book I'm working really hard at kicking Frenetic Autism Mom out of my head. She's caused us more harm than good. My son is MORE than his autism. Seeing him as "My Son With Autism" or "My Autistic Son" has colored too much of our existence for too long. Since working to see us as MORE than a Family With Autism, my son's negative behaviors have nearly disappeared. It's amazing how much better an attitude of RELAX, ACCEPT, AND ENJOY -an attitude Frenetic Autism Mom never allowed herself to have - works than psychotropics ever did.
Autism no longer "consumes" me (see the name of this Blog), and we are better off for it.
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