Thursday, December 25, 2008

A Beautiful Spirit Having an Autistic Experience

It's been said that we aren't "human beings having a spiritual experience but spiritual beings having a human experience." That would explain why some people have a more spiritual life; they find it easier to tap into the spiritual being inside their body. It would also explain why so many of us don't tap in until something radical happens in our human experience - a death, an illness, a loss - to really shake up our perception of what matters. With these human experiences comes the realization that it can all be gone in an instant, and what are we left with, if not the spirit?

What happens, then, with people who aren't "spiritual?" Instead of being a human being who either doesn't believe in all that "stuff" or who just doesn't choose to tap into that side of life, perhaps it's that some spiritual beings are struggling with human shells that won't let them push through.

So if we are spiritual beings having a human experience, what's that mean for people who have autism? Are they spiritual beings having autistic human experiences?

People sometimes point out to me that my son, Colin, is so joyful, so cheerful, so full of life, light, and spirit. I didn't always see it. I've battled so many times to get him to do what I wanted him to do, like get dressed and out the door, or to stop him from doing something that brought him joy but either scared the bejeebers out of me or made a mess, like waking up in the middle of the night to climb the cupboards to eat Ovaltine with a spoon. Where was my joy in wiping down the walls or hunting him down after an escape? The joy was all his.

Colin's spirit enjoys life. It loves movement. It loves smelling the world and the people in it. It loves noise - hearing it and making it. It's the people around Colin who have a problem, not him.

The day that I started to see through the wiggly, wiry little autistic human body and see Colin's spirit was one of the best days of my life. It was freeing for my spirit. I finally understood what my mother meant when her friends asked her if Colin would be "okay" and she'd reply, "of course Colin will be okay! He's Colin!"

Colin isn't miserable, but I was making myself miserable worrying about him. I see other kids, some with autism, others with other diagnoses, in bodies that distract the world around them from seeing their beautiful spirits. Not one of those kids ever looked miserable to me, except when they couldn't get the rest of us to understand.

That's where I think the cure movement is getting it wrong. Are they really doing it for the "afflicted" or for themselves? Talk to any high-functioning adult - Temple Grandin comes to mind immediately - who used to be more "autistic" as a child. Read the words of a non-verbal person with autism, such as Sarah Stup. These people want to be accepted for their uniqueness, for their spirit within, and not judged by what they look like or act like in their human bodies. They want us to see them, not cure them.

Doesn't it seem we humans eradicate or cure one human disease or disorder, only to have another take its place? Maybe we're not meant to fix this human body. Maybe our frailty, our mortality IS the point, and God's way of telling us that it's not the human body - the human experience - that He wants us to live for. Instead, the joy and the light and the life all can be found if you look past it and into the human spirit.

*Quote by French philosopher Pierre Teilhard de Chardin.

Monday, October 13, 2008

No longer "consumed"

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.

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 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 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.

Sunday, September 7, 2008

"Colin's Fans" Dylan's Run 208

"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!

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.

Sunday, May 18, 2008

Autism Headlines Cure The Truth

Doctors make advances against autism

Yippee! According to this headline in the Daily News out of New York, our troubles are over!

Except that the headline is crap. The article goes on to talk about early diagnosis and early intervention - same ole same old. There is absolutely nothing about any so-called "advances."

Parents of children with autism find these types of headlines frustrating. This headline gives the impression that medical science is well on its way to solving the autism "puzzle." From the extensive reading I've done, and continue to do daily, I can tell you that's far from the truth. In fact, I believe we are at least one generation, probably more, from definitely figuring out what causes autism. I'd truly love to be wrong, but, unfortunately, I don't think I am. In the meantime, a headline like this allows the general public to put autism to the back of their minds, safe in the knowledge that "somethings being done" to help those affected.

This generation is going to grow up and the puzzle for parents and society to solve is how to take care of all those adults who can't take care of themselves.

C'mon, doctors, please make some REAL advances! Journalists, stop selling newspapers with headlines full of crap!

Tuesday, April 8, 2008

The Five Stages of the Autism Parent

If you weren't raised by wolves, you've probably heard of Elizabeth Kubler-Ross's ground-breaking model of the five stages of grief. Here's the list:

1) Denial
2) Anger
3) Bargaining
4) Depression
5) Acceptance

People associate the theory with death, and Kubler-Ross did include death, but she also applied it to any catastrophic personal event in a person's life, such as divorce and job loss.

As a parent, receiving a diagnosis of autism for your child can certainly be considered "catastrophic." Don't misunderstand me, because there will be someone out there who does! I'm not saying the child is a catastrophe! I'm saying getting the diagnosis is! It changes everything.

Most people understand the stages as a progression, that they fall in the order listed, but Kubler-Ross noted that this is not necessarily true. Many people skip one or another, and many people get stuck in one of them. I talk to a lot of parents. I see many of them stuck in one. I, myself, was stuck in Depression for quite some time. I now believe that, as parents, the best way to help our children is to get ourselves to the state or stage of Acceptance.

Denial seems to affect dads the most, more so than moms. They often get stuck in "there is absolutely nothing wrong with my kid" or they consume themselves with work to avoid having to face the day-to-day reality of having a child who can't be "fixed." I'm not saying ALL dads are like this, but anyone who's been paying attention to the world of autism can see that it's the moms who most often jump past Denial and into Anger.

I see a LOT of people stuck in Anger. They're certainly all over the Internet. SOMEBODY -- the Government, the CDC, the doctors, the "Big Pharma" companies -- did this to their child, and "They" are gonna pay! Personally, I think this is the most dangerous stage for a parent to be stuck in. It helps to be in it for a short time, because anger can be very motivating and can give us strength, and we parents certainly need to be motivated and strong to get our children what they need. However, at some point, parents need to get over it if they're ever really going to help their child move on with life and living with autism.

Bargaining - I'm not sure I see this that often, but then again, it may be very personal and internal. Kubler-Ross identified people bargaining with God, and that can be a very private thing. Then again, is it a form of bargaining when people try any and all desperate and potentially harmful measures to cure their child? Many people seem to me like they'll certainly trade a "whole" child for the one they were given, no matter what they like to call it (again, Denial).

Depression, as I mentioned, is one I'm intimately familiar with. I believe, and I've seen studies confirming this, that most mothers of children with autism suffer depression to some degree and for varying amounts of time. It is an incredibly exhausting, overwhelming, and guilt-ridden state of being to mother a child with autism, especially when Dad is stuck in denial and not helping. If you think you might be stuck in Depression, please get yourself help! Please ask for help from family and friends!

Kubler-Ross considered Acceptance the healthiest stage of grief. Whatever the catastrophe, it's best to move on and live a life that acknowledges the death, the break-up, the diagnosis, and cope with what comes after. Autism, right now in 2008, is at a point that makes this difficult. Because there are theories about what causes it flying around out there with no solid answers, it's hard to just accept that this is how this child's life is going to be and to plan the future accordingly. It's hard to accept that we can strive for a cure, we can do all the therapies and the treatments, while at the same time, we have to accept that things might not change in this generation. Discoveries and cures can and do take decades, especially with something as complicated as this. If it was as simple as "vaccines cause this, " we'd be over and done with it already.

I've heard that it's very different for parents whose children are born with Down's Syndrome. Because medical science has pinpointed a definite cause, because the parents know for certain that nothing they did caused it, because they know for certain that there is no curing it, those parents can more easily get to Acceptance. They know they need to work on a plan for the future. They know they need to "move on" to help their child for their entire life.

I believe that for our children to have a happy and positive future, we parents of children with autism need to take a lesson from those parents and get ourselves to Acceptance.

Of course, there will be many parents who angrily retort that I'm telling them to "give up." That's not it at all. Don't give up! But don't consume yourself to the point that you and your child are not enjoying life now, and please, please, please, don't get stuck to the point that you aren't thinking about the future because you're convinced your child will be cured soon and the future will then be taken care of. As the saying goes, "hope for the best but plan for the worst." That's Acceptance.

Sunday, March 2, 2008

"Curing" Autism

There is so much fervent talk about curing autism. It seems that if, as a parent, you don't put every ounce of your energy into "curing" or "recovering" your child, you have failed.

I believe there currently is no "recovery" right now for most of our children, and that there won't be a cure in this generation's lifetime. To some, that belief means I'm not "doing everyting I can." I'm not "fighting the war" on autism, I'm "giving up hope." But as my dear late father would say, "I'm not a pessimist, I'm a realist." Besides that, who and what are we fighting this "war" against? It's beginning to feel to me a lot like a war against my son and who and how he is, not a war against something that's bringing him harm.

Our children are not deaf - they hear us talk about them, and we talk constantly! I believe most of them understand what's being said and after a while, it must sound to them like they are bad, they need fixing. The Internet is full of adults who angrily call their parents "curebies" and hate them for what they've done in the interest of curing them.

The problem I have with people intent on cures and "doing everything they can for their child" is that they are NOT "doing everything they can for their child." "Doing everything that they can for their child" would involve spending half of that fervent energy on making that child's life, as it is with autism, happy, comfortable, and containing a future -- just in case autism isn't cured in their lifetime. Focusing on a cure alone suggests that there is no future without a cure, there is no happiness without a cure, the person with autism is not good enough without a cure.

Because I have decided to give up on the burden of maintaining a GFCF diet that hasn't netted any measurable results, because I haven't tried chelation or hyberbaric, it's suggested by some that I'm "not doing everything for my child." On the contrary, allowing my child to BE and be happy and accepted and not turn him into my own personal science experiment IS doing everything I can. Don't misunderstand me: I do think we need a cure. This disorder is VERY tough on family and society. But it's not cancer, which is a disease that can kill a person, and an unwelcome assault on the body. Autism is, to those personally affected, a way of being, and who wants to be told they must essentially change to be accepted? We must put as much energy into planning and preparing for a future for our children AS THEY ARE as we do to figuring out why this "epidemic" is happening.