The Joke’s On You…281 Days To Fix This

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B makes me laugh. More than anyone in the world. Greater than Robin Williams, Margaret Cho or Bob Newhart. He’s wonderfully funny and with his humor he can make a day go from bad to good with just a funny expression. But one of the things he uses his humor for is to combat difficult situations…the kind where oh-so-nasty-honest-to-goodness FEELINGS are involved so he doesn’t have to dig his way into an issue but he can try to laugh his way out of it. He acts kind of like a cat trying to fight his way out of a brown paper bag in that regard.

I do not have a great sense of humor. I mean, I can be funny, but it doesn’t come as natural for me as it does with B. At times my husband has accused me of being humorless. Usually that accusation comes when we are having a disagreement and I am not buying into the humor that he is employing in order not to have to tackle the more difficult problems in our relationship. But here’s the thing…I think knowing when to use humor is every bit as important as having it. Relating a story about how our kid lost his swim trucks in the Polar Bear swim….funny. Cracking a joke when I am asking about how he feels our relationship is going…not funny.

People use humor for all sorts of reasons: calling attention to themselves, telling a story that uses humor to inform and sometimes just to diffuse tension. But when you need to use it to deflect reality and having to dig hard within yourself for tough answers then the joke is on you. Because you are the one who is the ultimate loser whether its insight, opportunity, or eventually the one you love who you later realize needed something more from you than a good one-liner.

There are two times a woman doesn’t understand a man: Before marriage and after marriage

An Intruder

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I am guilty. Probably most mothers of autistic children are guilty, too. We talk about our children and their difficulties and then add something to the effect, “but K wouldn’t be who he/she was without their autism.” Pretending that having autism is somehow okay. Almost sounding desirable. But, it is not. Autism is not okay and I, for one, am tired of pretending that it is okay in any way, shape or form.

Too often I have heard the old cliche that adversity builds character. That I should be somehow thankful that my children are lucky to be learning character building at such a young age. Well, thank you very much, but, my children have enough character already. They don’t need any more. And they certainly don’t need life’s hard lessons to be pounding at their door at such an early age. Frankly, it isn’t fair that their door is pounded on while others just get a tap. Which brings me to my next point. Life isn’t fair.

Growing up, I remember getting the “you weren’t born with a fairness guarantee in life” spiel from my parents. Well, fairness applies if you have a level playing field. Autism distorts that field. Everything that neuro-typical persons know about the game is understood and is defined in the play book. For the person who has autism, there is no rule book and there is no team. There is just them standing on the sidelines trying to “understand” the game. Like all parents everywhere, I don’t expect that everything should or will be fair for my son. I just want them to be able to have the chance to get into the fairness game and I want the same rules that other kids play by to apply to both of my children.

I also think that the old saying “life is not easy” when applied to our kids is wrong. Yes, life is not easy, but, who says life should have to be so hard? A middle of the road approach by society to my children would be nice.

But, what I hate the most is the kind of unspoken belief that children who are “different” are put on this earth to teach others character traits such as compassion. While it is wonderful that some (and I say some) children will be able to recognize and develop these traits as a result of knowing my son, it is not their primary purpose in life to help others gain their moral grounding. Their purpose is to bring their best person forward both in society and within themselves. And autism robs them of their whole self and their ability to achieve their full potential. Even if the only thing missing from their full potential is just to be able to tell and understand a joke.

Autism is neither my two boys friends nor mine. It is heartless and cruel. Autism has no compassion and shows no remorse. It just walks in our door and into our lives and makes itself at home. It is an outsider who doesn’t belong and I refuse to forget that. Just as we would fight off an intruder trying to get past our front door, so too must we fight autism. We must find the causes, discover better treatments and offer more to those who find autism at their front door. We must offer meaningful services to those with this neurological disorder. And as hard as autism tries to fully push open our door, I will continue to try and shut it out. I will NOT let autism take my sons and I will not let it take me. Until my last breath I will push against that door trying to keep autism and all of its idiosynchrocies at bay. It is a fight that I intend to win.

Copyright 2015

The “Good Enough” Parent vs. The “Golden Ladder” Parent

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I’m a loser parent. In an age when parents rush to get their children in the most prestigious pre-schools, spend a fortunate on multiple language, music and sports lessons, and attempt fill their children’s social calendars with more dates than the CEO’s of major corporations; I am happy to report that I am not one of these “Golden Ladder” parents. I strive not for excellence but to be just a “Good Enough” parent.

Unfortunately or fortunately, depending on your views; my kids do not have a “Golden Ladder” parent. I am not the type that believes that each rung that their child climbs has to be new, exciting, educational, worthwhile, and play some important role in getting their child where they want them to be in 20 years. For these parents each lesson and each task must have some sort of fundamental purpose that will serve their child well in their future life and help them score in the top 1% on the ACT. Everything their darling tries is of earth-shattering importance and each rung of the ladder must be comprised of something meaningful to give their child the competitive edge that they will need when they attend a prestigious Ivy league school. They think their children must attain perfection and be model citizens as they climb their way to the very top rung where the golden ring awaits.

The trouble with all this expectation on a child is someday the “Golden Ladder” kids will fail and both they and their parents will not know how to handle it when they do. I met one of these “Golden Ladder” parents a couple of years ago in the doctors office. At that time our autism behaviors with both boys were in full swing (read LOUD) and this “gentleman” proceeded to lecture me on my children’s behaviors while pointing out how quiet, still and properly behaved his three sons were. Meanwhile the nurses slowly nudged open the reception window to hear this blowhard’s comments. They quickly called my family back apologizing for the lout who probably never would have had the nerve to say to my husband what he said to me but felt he had the right to berate a woman to make himself feel powerful and get his rocks off.

I went home and I was feeling like crap.I was tired of trying my best but not measuring up to the “Golden Ladder” parents standards. But what this man didn’t understand is that what he could show his child once and have a successful follow through; I have to show my boys 200 times each. In a day sometimes. That is autism for you. Parents with autistic children also have to work 100 times harder day in and day out than parents whose children are neuro-typical dealing with such things as food issues, anxieties and toilet training problems. Many of us have autistic children with insomnia which means we inherit the condition via osmosis so we are perpetually exhausted. In fact, many parents suffer from PTSD disorder due to the high alert status we contend with every day. Being a parent to a special needs child is not for sissies.

Having raised three successful and wonderful children to adulthood I wished I had just turned around and said to that idiot “I hope you are right about your kids. Unfortunately, you will learn someday that they have their own voice, their own dreams and their own ideas which more than likely will not be in step with yours. So before you lecture anyone else about their kids I suggest you wait until yours are grown and then we will talk. Because what I have learned from having all my children is that we all have expectations and sometimes they must be dialed up and down accordingly. Don’t make the mistake of forcing YOUR will and desires on your kid.  For if you expect your child to constantly achieve “the highest/be the best/” then you are setting them up to cheat in order to make you happy and achieve your expectations. And if you stress constant achievement and teach them that being the best is all they should strive for, then most-likely they will not learn to be content.”

That is what I wished I had said. Instead, I whispered in his ear that he was an horse’s ass because I knew if I said it out loud ass would become my son’s new favorite word. To everyone.

One of the best things I have learned from having two boys with autism is that climbing the “Golden Ladder” is not what is important. What is important, autism or not, is being able to encourage your child without being vested in the outcome and to let them have room just to be themselves. And knowing that sometimes their actions will make your cringe. But do it anyway. But perhaps the most important thing I have come to understand is that by laying the ladder flat and just putting one foot in front of the other, that is more than good enough and it is just what they need. Even if your child does their walking on their tippy-toes.

Losing It

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As you know I am desperately trying to curb my yelling habit and for the most part I am succeeding. I had only yelled once in over eight weeks which in itself is amazing but this weekend I lost it.

It isn’t easy raising teenagers especially those with autism. Andre does everything he can to push my buttons. While incredibly smart he also uses that keen intelligence of his to manipulate those around him and it is draining. This weekend after repeatedly asking him to hang up his clothes he told me, “I don’t have hangers.” I responded by going to his closet and started throwing every hanger he had out saying repeatedly “Here’s a hanger, here’s a hanger” until I had thrown at least 30 into the middle of his room. Then I decided that he could go through all the shirts and get rid of those that no longer fit him and took all those shirts off their hangers and threw them in the middle of his room until his closet was bare. During this time he was intentionally saying “push your button” things that just fueled the fire; the embers rising swift and hot like my temper.

I hate when I lose it with my kids. It makes me feel so small. It makes me beat myself up about not being a parent that my children deserve and certainly not one whose behavior I want them to emulate to their own brood when they become adults. Losing it with my children feels like it diminishes my capacity to be a fully functional human being and that in losing it I also sacrifice part of my own humanity in the process; something I can ill afford. I hate it.

Mindfulness has helped change many of my reactions to situations but what do you do when mindfulness dissipates in the heat of the moment?

I am learning to apologize and pray that the others involved grant me grace. Then I sit in the moment of shame, observe it, then let it go. For they tell me that the only way we can feel diminished is through self-talk in which we berate ourselves for our numerous failures. Frankly, that kind of talk doesn’t get you very far in life and I’ve done enough of it to know. Dispassionate observation of what occurred and pausing to recognize what happened and then letting it go is my only option.  Then I just forge ahead with the belief that I can and will try to do better.Truly it is the only thing I can do.

Shut Down…307 Days To Fix This

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The other night you accused me of shutting down after discussing the “Gwenniferr” incident. You asked me why I shut down. I have been thinking about it and I think I have some answers for the two of us.
I feel crazy when I talk to you and you deny saying things like “I never said I didn’t talk to Gwenniferr or that she never comes to the gym.”
And yet when I talked to my friend she said,  “Yes, that is absolutely what you told me he said the last time we discussed this months ago.”
And then you change your story so that NEVER means every two to three weeks.
And I wonder if Webster would agree with that definition?
I feel your anger or your disgust/disappointment at me and in me for bringing up things that make you uncomfortable. And I feel those feelings you carry so deep inside you and they touch me, strangle me at times, without you even being aware that they are doing so. I am slowly realizing that it is not my job to carry around your feelings but I have been doing it for so many years that I am not quite sure how one just stops. Is it like walking the dog and letting go of the leash? Is it like giving you a lit match and walking away? Is it like pulling up the anchor so I can sail away?
And tonight
I felt your anger in your footsteps that suddenly hit the pavement harder
and I watch as you move out ahead of me, moving faster, as if trying to get away.
I felt it in your physical avoidance of me. I feel your disappointment/disbelief in me and later the words come that I have felt going around in your head all along:
“What’s it going to be next time?”
Accusingly…as if I should not have had these feelings or thoughts
Regarding a woman that you obviously have admired
And that I should not talk about these emotions when I have them
Because I brought up the two most painful things for me in our marriage
On consecutive days
One intentional, one not
And you can’t deal with the feelings of one
Let alone two
I knew you felt the “what’s it going to be next time” long before you said it
I shut down because I feel the heat your words even though you don’t always say them
And I don’t know what to do with your feelings
That I shouldn’t be carrying around at all
And I don’t know what to do with my reactions
To all those unspoken feelings and words
So heavy on my shoulders
The ones that I have lugged around for so long
So you can be free
And I can be burdened
Guessing what these emotions mean
Confused in their context
Trying to put together a picture
With pieces gone
Missing, lost and fuzzy in our memories
Knowing that someone has done something hurtful
But not really sure what it was anymore
Just knowing that the pain has not ended
And I need to stop
Shutting down
(Alternative ending)
And I need to stop
And just kick your ass!

A Seven…342 Days To Fix This

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So last night when we were taking our nightly walk I made the mistake of asking B how was I doing on the changes he had asked that I make. I figured I was at a 9.5 at the least. After all I have:

  • Not yelled in like 25 days
  • My house is practically ready for a photo shoot in House Beautiful minus the sink where a pile of dishes is stacked because B needs to put in a new garbage disposal.
  • We had explosive sex 5 times this week (confession, it was only explosive 4 out of 5 times but hey I’m 55 so I count that as a blessing) Unfortunately, it appears that “Bat Ears” radar picked up on the fact that we were “going at it” which may explain why he is walking around the house repeating the number “69” over and over again. Sigh. How will I explain this one to his teacher?
  • I am smiling and dancing like a Pharrell Williams Happy extra when my heart is really breaking.
  • I’ve lost ten pounds

Yes, I have worked myself into a brand new me and frankly I have been pretty impressed with her. For in the midst of heartbreak I am also feeling strong and optimistic about who I can be as middle age creeps up on me (at least a couple of hours a day anyway)

So after all this change and angst which I am working so hard at I was devastated when B replied, “Well, I would say a 7.” And that is when I realized we really may not stay together because, frankly, I am doing the best I can do. The best I will ever be able to do. I can do no more and I wouldn’t want to even if I could. And if that is worth only a 7 in B’s book then we are doomed. Because I am working so hard at making others happy that I am losing myself even further in the process. And losing myself is not something I am willing to do anymore. Not even for B, or my kids, or my church community. Because I know that in losing myself it only makes my relationships stay in a state of limbo and that in the end the relationship will never make up for what I have given up in order to keep things going. All I am doing is creating an illusion and building a house out of sand that will be swept away during the first big storm. And as luck would have it, this year is suppose to be a hell of an El Nino.

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A Goodie For Me (And You)

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I haven’t mentioned that while possibly losing a husband I have gained a therapist. The husband is definitely cheaper but the therapist actually listens to me so the trade-off is worth it. Yes, I am paying her to listen but one might say I am paying off my husband to listen to me too…just not in cash…and frankly he does half the job that the therapist does.

Anyway, my therapist has instructed me to do four things every day to take care of myself.

  1. Exercise at least 30 minutes per day. Check. I’ve got this!
  2. Spend time in your own spiritual realm
  3. Mental-Spend time reading, doing something that engages your mind and helps you learn
  4.  Social/emotional- Spend time really being aware about what you are feeling and what those feelings are telling you.

So one of the best things I have been doing for myself the last 10 days is listening to the meditation/hypnosis tapes of Chel Hamilton. They calm me right down and keep that calm surrounding me throughout the day. I believe that Chel has helped me with that horrible yelling habit of mine. She also has done podcasts on finding joy, improving your relationships, increasing self-esteem. Best of all they are short (about 10 minutes) and they are FREE. Chel has a podcast and you can find her here:

http://chelhamilton.com/free-hypnotic-meditation-audios/

Seriously, these are the best 10 minutes I give myself during the day. And it is better than living in my closet trying to escape the chaos outside my door!

*All posts are owned and copyrighted by this blog’s owner 2015*

Lies and Deception

Okay, I have to be honest here. I KNEW THIS WAS COMING…SOMEDAY…just not now… this minute, this hour, this year. Even though I have seen this played out in my mind 100 times I was still dumbstruck when B came to me and uttered that ugly seven letter word D.I.V.O.R.C.E.

So you might be wondering if you knew; why didn’t you do anything about it?  Believe me, it’s not for lack of trying. The fact is my husband stuffs his feelings, doesn’t share and honesty scares him. I knew this was coming because I began sensing it about two years ago but no longer trusted in myself to be my own determiner of truth. Frankly, I asked, begged, and cajoled B but…”nothing is wrong… everything is fine” were the only words I heard. But it wasn’t. Obviously. And today, after the “shock” no longer has the power to kill the soul but just send this heart in life threatening arrhythmias; I am mad. Really mad. Why?  Because if my husband is the man he has claimed to be, he shouldn’t have let his disappointments/anger/frustration at me and our relationship build to the point that he casually tossed a match and in the process burnt the house down. No, in my book, you are suppose to share and be honest, which in turn puts out the little fires before they become the raging inferno that feels like it is now consuming my very soul.

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And here is the other thing… by not being honest with me it made me experience this vague sort of “unscratchable itch”…a feeling that something wasn’t quite right, keeping the Unisom company rolling in unexpected profits as I lain awake night after night trying to figure out what, if anything, was going on. And in doing so it was forcing me to be less than honest with myself. It felt like I was cavorting with Alice in Wonderland and not living an authentic life.  This lack of honesty made me feel even slightly crazy and left not believing in my own powers of intuition and maybe that hurts most of all. Because if you cannot believe in yourself and what you know is true, well, what CAN you believe in?

But mostly, I am mad because in knowing this was coming I have been living in fear with a sense of dread mixed in a/k/a LIMBO that soul sucking state of being from which there is no going forward and no going back. I was just stuck and I’ve been there for the past two years, living as if a ghost was haunting me. A ghost that no one believed in, yet, I felt its spirit was there taking up space in my mind and in my home. And now I am left to call in Ghost Busters or Myth Busters, for at this point they are one in the same and the bill to clean up this mess will make the National Debt look small. And it didn’t have to be that way if B’s own fears about honesty hadn’t held him captive.