"F" Autism.
By Angela Warner
As we know all too well, it’s Autism Awareness Month. After a wonderful conversation my husband and I had this morning with his sister, I decided that I needed to raise awareness within the autism community on a subject that is rarely talked about. Us, the parents, and how our marriages can and do suffer from the pressures of having a child or children with autism, and what we can do to hold it all together.
The conversation this morning was all about autism, and what my sister in law could provide for a friend whose child has autism, and whose marriage is struggling. Dave and I have been thrown the double whammy of surviving the bad statistics for divorce in both the military (65%) and autism (80%) communities. As we were having a three way conversation, Dave and I both jumped at the opportunity to take it from Autism Awareness Month to Autism ACTION Month. Pun intended.
The first words out of my mouth??? Tell them to have sex.
Why??? Because it works. Trust me, I know. Being the mother of four children and married for 10 years at that point (of the “have sex” conversation you’ll read about), you would think that this simple thought and Action would have crossed my mind. Nope, not so much. After autism diagnoses’, deployments, treatments, therapies, the addition of our fourth child, and endless months of fighting pushing us to the brink of divorce; that kind of Action was the last thing on my mind.
On the brink of divorce, but still very much in love with my husband and what we had, I extended my arms for help. There’s this wonderful Warrior mom, you may know her name… yeh… Becky Estepp with TACA, and fellow military spouse I might add, she told me to have sex. I’m thinking to myself that this is nutzo advice; I almost don’t even want to talk to Dave. I am sure he felt the same. But then I think what we both already knew… we have four kids, two with autism, divorce is not an option, and will ultimately do none of us any good. We made a commitment that included the words “for better or worse”, and I know we both meant what we said March 22, 1997. Ok… mom of steel when necessary, we’re in the worse and it sucks. We’re gonna get to the better of it all.
Unbeknownst to me, Dave was doing some reading of his own at the very same time. Within a week of my “have sex” conversation with Becky, Dave and I are again arguing in the kitchen late at night, long after the kids have been put to bed. All of a sudden he strips off his clothes, and looks at me with all seriousness and says, “I was reading the other day that it’s really hard for someone to yell at you when you’re naked”. So there he stands, looking back at me, in his birthday suit. I don’t think I have to tell you what happened next. And ever since that night, Action has continued to happen, intimacy has returned to our marriage, we both agree that we feel closer now than we ever have, and even with the crapisodes (thanks Kim) and craziness of it all, we are having fun again.
Now, don’t get me wrong, we still get very irritated, and occasionally argue. He works, I work (volunteer), we have four kids… it’s tough and far from perfect. We try to spend more time balancing each other and our family to ensure that everyone’s needs are met. Some days are more challenging than others, but the flow of things has been so much better. The dialogue that is continuing has grown our marriage in ways that I can not articulate fully other than to share… we ride. You can see a clip HERE. We’ve been doing this for years, but it has taken on new meaning since then. The second burst you hear in the video is us up to 60 in less than a block. I feel the need for speed. Yes, I will admit, we’ve done over a buck (100 mph) a couple times. It requires great trust and wills. Done. For us it’s a terrific form of stress relief. Lots of body contact…. There’s no need to speak, only laugh, and hang on! For example, the video clip led to an hour and a half ride, and as we neared the end doing about 40 0r 45 Dave decides to tickle my knee (yes I’m one of those whose knees are very squeezably ticklish), so yes that means he is driving one handed and if I freak then we’re going to wreck. Well what do you expect I did? I laughed and was steel, as we all are.
Another thing came over me this year. I’ve always been into all kinds of sports, and we’ve always had a SuperBowl party, but this year brought a refined love of football. I was always a Broncos fan. Dave has been a continued Steelers fan. Welp… I changed sides this year, watched a few games without hubby, and actually reported to him plays that were happening while he was at work. I don’t know, I think its Troy Polamalu’s fault (strong safety for the Steelers Defense). I told Dave I wanted a Troy jersey for Mother’s Day, and he gave it to me for Valentine’s Day. I cried. I did.
In turn, Dave has been reading what I tell him is really important, and he has supported our family. When I talk to him now about anything, we connect. There may be some Action as well.
For all the men out there who are in the supporting role and facilitating everything, I would encourage you to do the same. I consider myself a feminist and a traditionilist. Roles get reversed, and I fully appreciate this. I’d like to see some dialogue from your perspective. Put it on paper man, or I’m gonna have to order another Polamalu something. Is it football season yet? Damn!
We need to pay attention to ourselves and share our stories. We need to be prepared to help those behind us not only treat their children, but save their marriages as well. Don’t you agree? Ante-Up.
Angela Warner runs the site Autism Salutes.
Here ya go Twyla, When Dove's Cry from Romeo and Juliet
http://tinypic.com/player.php?v=303cwf4&s=5
Beautiful interpretation.
Posted by: bensmyson | April 10, 2009 at 07:08 PM
I thought of this article a couple of times yesterday. Once was when I happened to hear Prince singing, "Why do we scream at each other? This is what it sounds like when the doves cry."
The other was when I happened to hear an ad on TV saying, "Ask your doctor if Cialis is right for you!" I imagined an ad saying, "Is your family affected by vaccine-induced autism? Not to worry! Pharma may have caused the problem, but pharma has all the solutions, too! Risperdal for the affected child, Cialis for the stressed out parents, and a bit of Prozac for the siblings! Pay no attention to those long lists of serious side effects in the small print!"
Posted by: Twyla | April 10, 2009 at 11:52 AM
Great article, Angela -- thanks for sharing!
Bensmyson, I wish I knew something to say. I hope you find some good help.
Posted by: Twyla | April 08, 2009 at 11:14 PM
Thanks for this wonderfully honest piece. I think we could use more of this this kind of practical, right-now advice. We get our fill of bio-medical papers- not that I don't appreciate those. It's just that this is a refreshing change!
Posted by: Nancy Naylor | April 08, 2009 at 10:35 PM
Sorry I meant to post that last post somewhere else.
Posted by: bensmyson | April 08, 2009 at 07:11 PM
My three year old has been diagnosed with encephalitis. The doctors believe the brain injury he received from his encephalitis caused him to present with some of the characteristics of autism. Just this past weekend we took him to the emergency room because he had been having fevers (which is not unusual for him) but our main concern was he was exhibiting MORE autistic traits. Nearly stopped his language except for the echolacia, not making much eye contact and horrible uncharacteristic temper tantrums.
The pediatric doctor that saw him in the ER made a referral to the neurologist for him to be seen this week. The soonest the next available pediatric neurologist said he could see my son was the end of June. I asked why there was no urgency since the ER doc thought that there might be.
The neurologist said, "autistic children often have fevers that cause them to regress until the fever breaks then they bounce back" I told him of a December 2007 study that stated that children with autism seem to improve slightly when they have a fever. (as is my experience, thus being concerned about the change)
The neurologist said he never heard of such a study.
I guess he not only doesn't read the scientific journals he doesn't even read Time Magazine, particularly the April 7th article titled, "Why Fever Helps Autism: A New Theory" this has obviously been kicked around by the scientific community for a long time and has even found it's way to the grocery store checkout line.
http://www.time.com/time/health/article/0,8599,1889436,00.html
I have to believe these "doctors" (and this one is Harvard educated) are like plumbers, half of them have no idea how to do their job, and the only reason why they have the job is because they have a license, not because they are any good. And any of the research done investigating autism escapes them completely. Maybe instead of posting these studies in professional journals they should post them in golfing magazines.
God help us!
Posted by: bensmyson | April 08, 2009 at 05:39 PM
I think this is really good advice, not just for parents of autistic children, but for all married couples. But it's important to point out that just going through the motions won't save your marriage. You have to spend time alone together, enjoying each other's company one way or another. This may be easier said than done, but somehow you've got to make it happen, at least for the kids.
My wife and I just have one little three-year-old daughter. We've only been married for five years, but already I'm starting to see how this works. Ever since that baby came along, it's been an ongoing struggle for my wife and I to be alone together like I was talking about.
I'd say if you have grandparents within driving distance, take advantage of them often! Depending on your situation, it may be hard to find childcare, but just remember: It's important!
Posted by: Cliff Jones | April 08, 2009 at 04:31 PM
Angela,
Love your article! Way to go!
Chantal
Posted by: chantal Sicile-Kira | April 08, 2009 at 09:58 AM
i'm a single mom who adopted my grandson and have raised him since day one...i have no other children living at home...
i can't even imagine what dissolution of nuclear family is wrought by having the various aspects of raising a child, or children with autism...
since i have no distractions, i can pretty much devote my time to zion without robbing another soul of anything...
altho i admit, my own sanity often feels on the brink of dissolution!...
the neurologist tried my son, who has violent meltdowns followed by desperate crying spells, on zoloft....
it did nothing for him, but make matters worse...but i can't help thinking that i might need a little pharmaceutical help from time to time...
so here's to all the warriors out there!
carry on!
i know we all will!
Posted by: moon batchelder | April 08, 2009 at 12:47 AM
I am not a parent of Autism but ia m working toward a teaching degree to take care of your wonderful children. I am a mother of two boys and I love your children jsut as they are no I see not the nightly battles, or morning tyraids but I love them while I have them at school. They are precious people jsu the same. I have laughed at every comment and cried. My battle may not not be Autism but I know your pain in other areas of my eldest sons life. Keeping going you all are troopers to me.
Posted by: Teacher 2010 | April 07, 2009 at 09:58 PM
"That's it! Instead of A of A t-shirts I'm going to make A of A thongs! After all, autism is already a pain in the ass."
LMAO!!!!!! That was hysterical...
Posted by: htbenz | April 07, 2009 at 07:51 PM
Kim looks like Offit beat you to it. Check out the link below.
http://i40.tinypic.com/w89w1y.jpg
My wife got a pair by mistake and hates them.
Posted by: bensmyson | April 07, 2009 at 06:57 PM
Alison MacNeil,
As someone who reads A of A daily and always reads the comments section, I would like to say that your comment has made it to one of my all time favorites!
You are so right it is scary!
Posted by: Sylvia | April 07, 2009 at 06:24 PM
His and Her Thongs! Now there's a novel idea:
Hers: "I've *cracked* the autism puzzle"
His: "Let's celebrate WAAD"
Neutral and to be worn by the one with the cuter toosh: "Genetics -- my a**"
(See what I mean about a can of worms ;-)
Posted by: Kelli Ann Davis -- The Can Has Been Opened | April 07, 2009 at 05:11 PM
I am so glad ya'all are having fun with this. I have done little but laugh over this since Sunday morning when Dave shared the story with his sister. It's funny as hell, but serious too because we all know there are so many families out there in crisis that may not know where to turn, or won't talk about it because they think they're the only ones going through it. I'm just really happy that you've enjoyed the post.
Kim... Pleeaasssseee, no thongs. Autism is a big enough pain in the ass without adding to it! :)
Kelli Ann... they do sell things to help remedy part of the situation you're in. How do you think so many of us make it through deployments and seperations without going absolutely stir crazy? I know, not exactly the same, but a tension reliever none the less.
Keep laughing everyone and Get Some Action!!!
Ang
Posted by: Angela Warner | April 07, 2009 at 05:07 PM
That's it! Instead of A of A t-shirts I'm going to make A of A thongs! After all, autism is already a pain in the ass.
Kim
Posted by: Stagmom | April 07, 2009 at 04:20 PM
This is AWESOME! And not just because I'm a lifelong Steelers fan.
I just sent a link to my wife -- and told her that this will help her know what to do when I yell (which I rarely do, and almost never at her; but I may start now :) Hopefully we'll be able to take your advice.
Since I've been reading AoA I've been better able to keep up with my wife on issues that are important to us both.
Posted by: ObjectiveAutismDad | April 07, 2009 at 04:00 PM
As the mother to two boys, a 22 year old on the spectrum and a 13 year old with angst and attitude, I can relate to the rough bumps on the autism ride of life. The marriage usually ends up wearing the skid marks. I can really appreciate your call to "action" since sex has been keeping my marriage in tact all these years! I suggest we start a campaign to replace each bump with a hump! Hey, I can't wait for Wednesdays! ;)
Posted by: Wanda Lynne | April 07, 2009 at 02:05 PM
Well Angela, you certainly opened a nice can of worms, didn't ya?? Love it. And heck, if you and Becky are engaging in this kind of "chit-chat" count me in next time, would ya?
Unfortunately, when your marriage doesn't survive and divorce happens, it's hard making that transition from "daily Action" (sometimes even a double daily dose ;-) to "NO Action" as in I'm-talking-about-years-not-months!
NOT FUN! But what's the alternative?? Going out with every Tom, Dick and Harry who offers me a an "Action line"??
I think NOT!
Signed,
The-Action-valve-is-turned-off-for-now-but-just-waiting-to-turn-it-on-full-blast-when-the-right-guy-comes-along....Kelli
Posted by: Kelli Ann Davis -- Action Is The Name of the Game When The Valve's Turned On | April 07, 2009 at 01:53 PM
Let's not forget the calming benefits of non-compounded oxytocin!
Yep, this is how we made it through 6 years till recovery, it's cheaper than a movie LOL!
Lord knows when you are paying 400 bucks a month for compounded medicine you need all the cheap legal thrills you can get.
It offsets scrubbing poop out of the carpet in tandem.
Posted by: karenatlanta | April 07, 2009 at 01:43 PM
Benysmom
Your decription is spot on. The other day, we had a particularly hard autism day, seizures too, and it was like, why us? We happen to pull ourselves together get in the car and go out to dinner with our kids. We drove by a high school where parents were watching their kids play soccer. I pointed out to my husband that "see, that would have been our life"...he looked at me and started to cry. I never see him cry. I mean NEVER. I suppose that adequately illustrates the loss we have felt. Autism robbed us of normal times, normal everyday times, normal wishes and dreams. Albeit, I have learned other things, some quite valuable and immesruable, I still go to that land of make believe, and wonder what kind of people we would have been.
I sorrow for my kids who are older with autism, because by now, they would be married with kids, and I would be hugging them (grandchildren) and loving them now. It sucks.
I may not be a military mom, but I feel like me and my husband have been through a war, which took place in a jungle. You have to everyday, whack away the weeds of bad doctors, bad directions, bad thinking, bad roads. You are constantly educating, constantly realigning your hopes and dreams, and often are desperate for more clear cut paths that are recoveirng children from this nightmare. I have been a patriotic soldier, not complaining about my lott in life, only in private, and often bear the weight of the world which wants our children to be silent and locked up in an instituion, so as to not remind us, that the world sucks, sometimes.
I am sort of done with the advocacy, albeit, I suppose I advocate everyday for my kids, making sure they cross the street with safety, eat the right foods, take their biomeds, make sure they get social pieces, etc. I am a lone soldier, in a lone land, and without equipment at times, to win this war. I don't have a banner on me saying mision accomplished, I have a banner on me saying, my mission is not complete. EVER.....
Posted by: Kathy Blanco | April 07, 2009 at 01:32 PM
Here's a feature I would dearly love to see at AOA: Comment or quote of the week sort of in the same vein as Gawker's Gold Star Motel. (and how appropriate is the motel part?)
I know it is only Tuesday but I must nominate Alison MacNeil's comment especially the line "My husband and I hate Paul Offit so much it's passionate, it's foreplay".
I will never be able to hear Offit's name again without thinking about that comment. Good one!
Posted by: samaxtics for Stagmom | April 07, 2009 at 01:02 PM
From one "statistic survivor" to another! (I'm also a military spouse with an autistic child and four other so-called "normal" children, whatever that means). Great post!
I think I'll e-mail this to my dh. You know, sometimes the men have it right. When you are having trouble coming together emotionally, sometimes coming together physically is best first.
Posted by: Chris | April 07, 2009 at 12:48 PM
It can be really, really hard to switch from mommy, daddy autism mode to "action," mode. We find keeping a steady supply of Jose Quervo, margarita mix in the house helps us relax a little and transition to I want you - come get me mode. Of course after the kittens are nestled and sleeping soundly.
Posted by: Margarita Mom | April 07, 2009 at 11:43 AM
This article is about so much more than sex. Yes, that is a great first step to reconnecting. You get caught up in the hell of autism and before you know it, it has been weeks (or more) since you’ve had sex and when you let those defenses down it is the best way to acknowledge that each of you have needs as well.
But where do you go from there?
When my daughter began her regression at two through about three months into biomedical treatment my husband traveled 5 days a week. Our daughter’s regression progressed slowly and she always was a high functioning ASD kid. So…my husband just thought that I couldn’t deal with a toddler. I was strung out, freaked out, used up and exhausted at the end of every day and my husband wasn’t there to see the endless spinning, hear the echolalia, see the random mini seizures, watch the tantrums or hear our daughter cry, “Mommy, I need you” all day long (just to name a few symptoms).
Then came Christmas vacation. My husband had two weeks with us, without escape. In just 3 or 4 days he was apologizing to me and asking me what those test were again that I had been talking about for weeks.
We started biomed treatment the next month. Not that this was an end to our struggle. I was totally overwhelmed with learning about her condition and educating myself about treatment. He still traveled at first. He was supportive of treatment but questioned, second guessed, worried over everything I implemented and freaked about the cost. We fought and fought and fought.
Finally, I told him that it was not right to claim support and then fight what I was doing. He had no education under his belt but wanted to argue with me about specific treatments. I told him, “You can either get on board and educate yourself so that you can speak to what I am doing from an educated position or…you have no voice and you need to get the hell out of my way.”
Well, needless to say he married me because he likes out spoken women. He came back to me sometime later and said, “You’re right, I haven’t been fair to you in this.” He started reading – on the plane – in the hotel room, etc. He came home one day and said “I am changing jobs, I don’t ever want to be in a position that I don’t know what’s going on in my own home again.” He attended a mini DAN! Conference (by himself). I was still the leader in treatment but I wasn’t alone any more, trying to justify every step I was taking. I had a partner. My husband stepped up in an amazing way. Then came the sex!
On my part, I had to learn to take care of myself. I started yoga, got a handle on my health issues (thyroid disease) and just recently discovered adrenal support supplements…talk about an energy and libido burst!
I not only feel better for me but I have so much more to give my family and feel more willing to give it.
Don’t forget what Jim Carrey said at the Green Our Vaccines Rally, “We need these kids as much as these kids need us.” Bottom line…we have to find ways to take care of ourselves and each other (our spouses) or we can’t possibly be the best we can be for our children.
Posted by: Pamela | April 07, 2009 at 11:36 AM
Angela,
This is so honest! Autism is hard work,it is hard work everyday. We keep talking about natural healing for our kids. Well here you go, natural healing for the parents.Not only for our physical selves but for the partnership.And it's pretty much free!
Posted by: K Fuller Yuba City | April 07, 2009 at 11:21 AM
It's so important that we as autism parents say what needs to be said - no matter the subject. Thank you for speaking up. I for one have heard your rally cry!
Posted by: Ready for action | April 07, 2009 at 11:18 AM
Alison that had me laughing out loud! No, Fisher and Shitzflicker are too busy f*cking over our kids. And knitting wools caps to pull over other parents' eyes.
KIM
Posted by: Stagmom | April 07, 2009 at 11:12 AM
Saucy. Very very very very very saucy.
Posted by: Media Scholar | April 07, 2009 at 10:34 AM
My wife and I were out on our porch last night, a neighbor was having a NCAA b'ball party and there were loud whoops and hollers mixed with laughter and shouts. I just knew the beer was flowing and how much fun these couples were having as they cheered on their team. I remarked to my wife how easy it would be to walk over and join in the fun, but how hard it would be to forget what I left behind.
It's the same way with good sex. Fun just seems like something other people have, sort of like trust funds or job security or healthy kids.
We went back inside the house, turned off the game, washed dishes, cleaned the playroom, folded laundry and went to bed. Five and a half hours later our day began all over again.
It's Groundhog's Day.
Posted by: bensmyson | April 07, 2009 at 10:00 AM
Great advice for the folks who are still in marriages. Now, will you please write Part Two for those of us whose marriages have already failed? Maybe there are a few proud good single heterosexual men in the military who would like to do their country good by being of service to single/divorced autism moms?
Posted by: I want it too!! | April 07, 2009 at 08:06 AM
I hear ya. The hard part is getting there, which, I suppose is all the more reason to stop "thinking" and just start "doing."
Posted by: Adrienne | April 07, 2009 at 08:04 AM
Nice video. Steppenwolf rocks!
Posted by: sdtech | April 07, 2009 at 08:03 AM
Lay back and think of England.No seriously, when parents of vaccine injured kids have sex it's revolutionary!It's an act of defiance.Look at the obstacles we've overcome to get to 10pm everyday still married, the mountain of clean, unfolded laundry on the bed notwithstanding. Most of the nt parent's I know don't have much to talk about besides the the economy (not sexy).My husband and I hate Paul Offit so much it's passionate, it's foreplay! Sex with Autism is like lipstick during WWII. It's patriotic. So do your duty.FYI, after a quick glance at Fisher and Wienerschnitzel on LK fri night - trust me, they aren't getting any.
Posted by: Alison MacNeil | April 07, 2009 at 06:56 AM
Very brave and honest post. I will wish upon a star. Thanks
Posted by: Tanners Dad | April 07, 2009 at 05:50 AM