Autism Touches Every Aspect Of Your Life

Autism sucks. At times it contributes to immense suffering for both the person with autism and his/her family. Sometimes it just does. Period. End of story.

Frankly, I have it easy if you consider the many behaviors that encompass the entire spectrum of people with autism. There are those people who cannot speak. or toilet themselves or self-harm. My sons have none of these issues. We are fortunate.

But sometimes I get weary of the constant pushback.The whole I say “yes”, so he says “no”. The fifty pokes to my arm everyday. The constant giving of some of the deepest parts of myself and getting very little back in return. The feeling that I am doing too much, or not enough, and either way believing whatever it is I am doing; I am most definitely not getting it right. Sometimes it is downright discouraging feeling that your choices are limited, as is your pocketbook, in your ability to get your children the help that they need. And for those of us facing mental health issues along with autism the chances to obtain needed services decrease even more until the quagmire you are in looks a lot like quicksand and it feels that way too.

Yes, I know that my boys are teenagers and some of this is normal teenage behavior but often it feels like it is teenage behavior on steroids and the doses are getting larger by the minute.

Over the years, I have heard comments such as “This too will pass.” Will it? When? Or “You are building character.” Seriously? We have enough character in this house to write our own sitcom. We don’t need anymore. So now, after all those years of worrying about offending others; I no longer put up with those people who “give you the look” or make”kindly” suggestions on how you could improve your children’s behavior. To them I suggest: you are not fighting the daily battle so you have no say. Keep your thoughts to yourself. I don’t need them and neither does anyone else who is doing their best day in and day out.

Maybe someday things will get easier for our kids. There will be less bullying. There will be more services. Schools will do what is right and give kids what they need to reach their full potential instead of fighting parents every step of the way. But until that time, parents are here engaged in a daily battle for their kids rights and it is sometimes beyond exhausting.

So the next time you see a special needs family don’t judge. Just give them a smile or a kid word and know they are dealing with more than you will ever have to. Then go about your business thankful that your family is doing well.

 

 

 

THOUGHTS ON BETRAYAL

I tried to write a piece on betrayal but I was afraid I was going to short circuit my computer due to all the tears. So I decided to do the next best thing…share some of my new found quotes on the subject. And a few prize worthy ones on different subjects.

 

P.S. To all you who follow this blog, today I went to the doc and had my blood drawn for an AIDS test….see sometimes I do listen!

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Betrayal II-Liar, Liar Your Dicks On Fire

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So the saga of my thirty+ year marriage continues.

After being assured by my husband that he loves me and will do anything for his family I told him I needed to have completed access to his phone which he agreed to. I asked many questions including wether he had seen her or not. He assured me that he had not and that she would not have sex with him if he was with his wife…how noble of her!

Later my oldest daughter Nicole called me. She said, ” I am sending you a picture that you need to see. It is dad with her in Singapore. She put the picture up after you emailed her.” (In that email I told her she was a fool and told her that she was not the only one he was doing this with. Did she really think that she was the only one?)

B and I were taking a walk with me asking questions. I opened the photo and saw him with the Chickie. He spent four days in Singapore fucking her last January. I asked him again, “Did you see her in Singapore?”

“No”

“Really, so what is this?” I asked showing him the picture.

“I don’t know who that is”

“It is you with her in Singapore, you dick. Recognize it now?”

He went white.

“I didn’t tell you because I didn’t want to lose you or my family.”

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Soon another text from my daughter. Worse still…seems my husband’s sister Jo is Friends with Chickkie on Facebook. I saved her daughter’s life and that is the thanks that I get. WOW! To me, for whatever reason, that is the biggest betrayal of them all. You love her so much you are already having your sister welcome her to the family!

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More texts from my daughter. The woman has four Facebook pages all with different names. My daughter then sends her a message that says “If you keep in touch with my Dad I will send your naked picture all over the internet including on your tour company site.” (Honey, I don’t think you should do that!)

The very unfortunate thing about all this is our children found out. I was packing to leave and told my son “Dad has hurt me deeply and I need a few days to clear my head. This has nothing to do with your you, your brother or sister. Sometimes adults disappoint each other and just like you need time away from your brother I need a little time away from your father, not you.”

He turned away from me angry and wouldn’t let me touch him.

“Honey, this is not my fault. This is due to a hurt that your Dad has done.”

B jumped in. “It is all my fault. Don’t blame your mother. I did something that hurt her very much and she didn’t deserve it. I am hoping she can forgive me (yeah thanks for putting that part in…making it my fault if I don’t forgive him…that is slick!)

Remember the telephone at the beginning of all of this…this is where it gets ugly.

Before I left I went and asked to see B’s phone. He said no.

“You promised,” I replied.

He handed it over nervously. I went to messenger and saw Chickie’s sister’s Face Time at the very top so I pressed the button. He went ballistic and tried to grab the phone. I tried to keep it away from  him. He grabbed me by the arm that just got out of the sling. One thing led to another and because he was hurting me…I bit him. Over thirty years of marriage and we have never had a physical altercation in our entire lives…until now. At this point our kids walked in the front door and her us yelling about HER (they have never heard us yelling like that at each other EVER). I got the phone and went into the bathroom. My hands were shaking so hard, well, that darn IPhone jumped out of my hand and into the toilet. Now neither of us could talk to her.

“I guess if she doesn’t matter to you like you have said, you wouldn’t have cared if I called her but obviously she means more to you than I do. Tell you what your fears have all come true. Everyone knows and you have imploded our family. Now go to her. You are free.”

My son went outside and lost it and started hyperventilating and saying he couldn’t feel his legs and it went down from there into a full collapse. I spent time trying to calm him…it was the worst thing I have ever felt in my heart, ever.  Gracie wouldn’t come out from under her covers. We have a totally traumatized family.

I am sleeping at a friends house. My life is a shambles. My kids are traumatized. My husband is without a job.

Life is good…and then it is not.

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Stress Eating/Mental Health Nightmares

I started my diet to lose 20 pounds at 6:00 a.m. It is now 11:30 A.M. and I have downed two pieces of fudge, drank another cup of coffee that is mostly milk and devoured a bag of moon cheese. All within 30 minutes.

I had good intentions. Truly I did. And I was sincere too in the belief that this week would be the one I got off my kester and set to work reducing my waist but at this point my resolution appears to be a waste… for life got in the way.

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It all started yesterday. I drove home from Las Vegas after Gracie’s dive meet where she took a first in one event. So proud of that kid. Anyway, after driving 6 hours I was met at home by an angry teenager. Paul was fine while we were gone but seems he and Gracie got into it the moment she came through the door.  An hour later I was holding him while he melted down and cried. Damn you autism and mental health challenges!!!!

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After those difficult and emotional moments it appeared things were better until I decided to spoil myself with a nice warm bubble bath.  And therein lies my first mistake…actually thinking that I could do something nice for myself without being interrupted.  For as I lay in the tub I suddenly heard very loud shouting and a slamming of a door that shook the entire house. As I jumped up and wrapped a robe around me I heard uncontrollable crying coming from Paul’s room. I walked into a mess caused by a kid who had dumped, in a rage, the contents of his desk all over the room and he was sobbing. I went over to him and he yelled at me to leave him alone. Now I don’t know about you but when I hear those words spoken with the tunderous roar of a fighter jet I know that I am needed more than ever. I also know I need to change into my Green Beret mentaility to succeed in turning things around despite the odds being against me.

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What ensued was not easy. I ended up on the floor while this child both raged, hyperventiled and talked scary stuff. I held onto him like his life and mine depended on it. This went on for almost an hour until at last he wore himself out. His words broke my heart. His pain broke my soul. And his anger touched a place in my brain that I never want to visit again.

Later, after going down to the kitchen I realized what the problem was. While I was gone he had not taken his medicine and B had not checked his box to make sure that he had. Two days without meds in Paul’s case is a disaster. He becomes a tsunami of emotions that threatens to wipe out anyone nearby and the result is anger that cannot be contained.

I worry about my son. I worry that one day he will rage at the wrong person. I worry that while “out of his head” he might get shot by police or hurt himself. I worry that in his anger he may seriously hurt his siblings instead of a kicking a hole in the door that is a reminder of when he got seriously mad. Sometimes I worry that his mental issues will engulf us all and carry us down the mountainside with him broken and  buried under tons of stone. I know my marriage has been effected by Paul’s issues and that we all suffer in different ways when he is off-balance and out of control.

This morning, I packed everyone’s lunches and drove each one to their school. I proceeded to the gym in order to kick my diet into high gear. As I was nearing my goal of three miles I received a phone call. Paul was having an anxiety attack at school and could I please come and get him?

He’s sleeping now. His face soft and relaxed. Quiet breaths making his chest rise and fall in a slow steady rhythm unlike yesterday when he sobbed so hard he chest was moving mountains. I look again and my heart fills with love for my son; this boy who feels others emotions so intensely and takes them on as his own. This boy whose face I first saw on an adoption site. Right now, he looks like an angel which is what I am afraid that he might someday be. For unless, we can find a way to teach him to control his emotions I am afraid he will be hurt and possibly killed. By a stranger, The Police. Or himself. Either way, our path is a hard one and we are scraping our knees as we once again escape the sharp edges of the precipice which is our lives.

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Visiting With Ghosts

“I’m not being bossy, I’m just telling you what to do,” says my husband.

As you can imagine these are not the choicest of words to say to your wife or any other woman who is over 30.

Years ago I would have told this man where to shove it if those words were said to me. Today, it is more complicated…kids, a 30+ year history together, mortgages…and then there is the sex which has always been divine.  So what does one say when the man you have admired more than anyone in the world hits his 50’s, goes through male menopause, and suddenly becomes someone you no longer know. Somehow…”SCREW YOU ASSHOLE”… no longer feels like an option when you are trying to become your best self and live in a more authentic and pleasant sort of way.

But enough of that.

Today, I was sitting inside when I suddenly heard the roar of B’s hedger. I decided to go out and help him because his back has been hurting.  Upon arriving outside I find B taking it to the rose buses with blades the size of a helicopter and my beloved pink agastache already mowed almost to the ground.

“What are you doing?”

“The trick or treaters won’t be able to make it up the walk. Had to make room for them.”

“B, those were precious to me. I work hard to have a beautiful yard. Why don’t you honor what I do and how hard I work?”

“There you go again. I can’t do anything right.”

And with that we were off. He went his way thinking his wife is a bitch and I went back into the house fuming while feeling what I do is devalued. As I crossed over the threshold it occurred to me that I could be right and I could feel miffed… or… I could have peace. Which did I want? It was a no-brainer. Outside I went.

“B… we need to talk. I came outside to help you so you don’t have to bend over”

“I’m busy. I’ve been working all day. I don’t need your help.”

“Honey, I am done with this old pattern of relating. I say something and you respond that you can never do anything right. Then we both go off into our corners with our invisible boxing gloves on. It is time to do something different.”

He looks at me suspiciously.

“Look,” he says “The kids can’t go up our sidewalk without running into our bushes.”

“I understand that now but didn’t realize it was that much of a problem. But instead of destroying what I worked so hard to create it would be helpful if you would come to me and state your concern about the kids. Then you could say, “Honey, I am going to cut the agastache down if you don’t come out and take care of them your way.” That way I am responsible for what happens. Not you. And I get to do things in the manner I choose; in a way that preserves my plants and my dignity.”

“I didn’t mow them all down…”

“Honey, lets just agree to disagree and try harder not to do the same dance which gets us nowhere. Right now, I am choosing not to be right at all costs. Instead, I am choosing to create peace.”

Later, we went to the pumpkin patch with the kids. We all know that they are getting too old for this folderol but it is a tradition…something to hold onto when so many things are up in the air and our relationship is hanging like grapes on the vine. As we entered the farm, I reflected on our “Days From The Past” and I remembered the happiness our family had experienced here. I harkened back to the times when I saw B in a kinder, gentler sort of light and felt a soft glow surround my heart.

I suspect that sometimes this is what is needed…reminders of times gone right. Those moments in our lives when our joy outweighed our sorrows and fits of laughter outnumbered our tears. Days filled with pumpkins, sunflowers, corn mazes and a frosted cup of apple cider. Maybe these are the things we all need to sustain us when things in our lives morph into things we no longer recognize.

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So this Halloween, instead of paying attention to the ghosts of the present who rattle their chains in an effort to be heard; I think I shall visit with the ghosts of the past to gain a new perspective and appreciation for what was and could possibly be again.

Roasted Pumpkin Seeds. Set oven to 350. Clean pumpkin seeds. Mix with melted butter, dark cherry vinegar, garlic salt, and rosemary. Roast for 25 minutes.

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Fast Pitch

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Well the condo is looking pretty good these days…wish I could say the same about myself.

It all started when I was on a ladder in the shower painting (a lovely shade of very pale gray, if I do say so myself.) Because laziness is a basic necessity while painting; I tend to stretch and paint rather than go up and down the ladder creating unnecessary stress on my knees. It would appear at my age that this type of thinking is a big mistake. For as I was reaching far further than the span of my wings; I fell backwards off the ladder and as I did, my armpit went over the door frame to the shower, while my body went forward. Ouch! Okay, it felt worse than ouch it was more like OUCH!

All week my shoulder and arm hurt but I kept thinking it would feel better soon. The next weekend I decided to be playful and tried to wrestle my husband on the beach. He promptly flipped me over like a grill master with a hamburger and as he did he accidently pushed down on my shoulder. OUCH!

And so for the past two months I have been in pain. Pain sleeping, when putting on my seatbelt, when reaching up, etc. Constant unrelenting pain that I have grinned and bared with grace.

Finally, I decided to go to the doctor who promptly sent me for an MRI which confirmed that I had a slap tear to my bicep. This would be fine except for the fact there is nothing that they can do but surgery in which they cut the bicep in the back, place a screw in your shoulder and re-attach the muscle into the screw. If you choose not to do the surgery, eventually that tear starts fraying and ” sawing” into other areas in the vicinity creating even worse damage resulting in a more comprehensive surgery with even more down time. As it is I will be in a sling for 4-6 weeks as this muscle kind of grows into the screw.

Surgery is set for November. The same weekend B and I were to go away together. Instead, I will be snoozing, with the help of some pain pills, in bed by myself. Another weekend shot. But I am okay with that because I am “re-inventing” myself and plan on telling everyone that the injury was due to my incredible 100 mile-per-hour fastball pitch which sounds much more impressive than falling off a ladder.  Even better, I will be stronger both mentally and eventually physically after mending and maybe this ole’ dog might even be able to learn some new tricks!

Life is good even when its not!

Roadblocks-10 Minute Poem Challenge

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Sometimes I think

You should be wearing

A florescent orange vest

And hardhat to protect

Your thick head

As you direct our relationship

Through all the roadblocks that you set up

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Your boulders of anger

Stopping the natural flow

Of traffic as we make our way

To the end of the road

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You hold up warnings

Reading: DO NOT ENTER

That push me further beyond

Our agreed upon destination

Creating detours away from

Intimacy, connection, and deep love

Leaving me traveling on an empty road

Towards a dead end

Out in the middle of nowhere

Where I can neither go forward

Nor turnaround

 

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Sometimes I think

You channel

Muhammad Ali

As you bob and weave

Dancing across my heart

Yet coming nowhere near it

Your left hook throwing me back

Against the ropes

Flattened and dazed

Seeing stars and two of you

One, kind and gentle

The other, a brut

Intent on winning

This fight

At all costs

Numb to the pain

That you have caused

And you tease and jab

As I wait for you

To deliver

Your knockout blow

 

Other times I wonder

If you are really a mason

Placing brick on top of brick

Day after day

Building a wall

 

With a hidden gate

That keeps me out

But lets others into

Your inner sanctum

And lets them experience

Your deepest feelings

That you have walled off

From me

But leave you

Standing alone inside

Of your fortress

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And me standing on the other side

Of those immense walls

Of Yours

We both know that

You view me

As the Big Bad Wolf

Huffing and puffing

Until I leap over the wall

Only to be burnt

By the fire in your soul

And your repressed

Anger towards me

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I’m Depressed

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I’m depressed. There. I said it. I’m depressed.

Frankly, it worries me as I have never allowed myself to go there. With so many people depending on me and a sister who spent time in a mental hospital; I have never before let myself plumb the depths of the despair I am feeling. However, now I am trying to give myself permission. Permission to explore what is on the other side of two years of marriage chaos and confusion. Permission to grieve for dreams that have been pushed aside by reality and for children who struggle due to the challenges of autism. Permission to just feel what I need to feel, even if it hurts. And permission to feel those deep rooted emotions and to not intellectualize my feelings as all the intellectualizing I do just makes me hurt worse.

I will confess this intense feeling of sadness scares me to my core. Not because I am afraid to feel those lows but because when you have had a family member who has experienced hospitalization due to her mental health issues and you have spent years dealing with hers…well, I just don’t want to put my family into that vat of pain and helplessness you can’t help but feel when surrounded with all of that. Yet, my therapist said to me that I have the skill set to survive if not thrive while looking at those things that make me uncomfortable and sad. And after reading Thomas Moore’s The Dark Night Of The Soul I know that there is plenty to be gained by going there for a brief respite. But still, I hesitate, my feet in cement for fear of going in too far or deep. For fear of becoming like my sister. Of letting people down.  Of not “performing” the requirements that are expected in this one act play that I am living.

I know I need to take a look at what is coming up from the depths of my soul. I know that I need to allow myself to feel these intense feelings. I suspect that it is similar to drilling for oil while trying to contain the amount that surfaces at one time. And its also acknowledging  that what comes up will have to be refined in different ways depending on how it will be used. And I acknowledge that any spills that occur will give me new skills to better contain the overflow the next time.

If I had my way I would stay in bed for a week and pull the covers over my head. I would play every sad song I have ever heard and have a Bailey’s on the rocks sitting on my bed stand sipping it over several hours. Oh hell, maybe I would guzzle it instead. That is what I wanted to do today. BUT…I had to make breakfast and lunch for everyone, take them to school, take a kid to the doctor and another to get her allergy shots. I had to wait for the dryer repairman, do the dishes, and mop the floor. I had to pay bills, get the oil changed and attend a meeting. Tomorrow it is more of the same.

So, here I sit, one toe half in and half out of this deep sadness. This depression. Perhaps if I am brave enough I will step on in and let it take me where I need to go.  To places I have never visited but probably should. Only afterwards will I understand that there are things to be gained from examining things below the surface. And who knows…I may just strike the motherlode while I am exploring with the sheets making the perfect tent in which to hide away from the world.

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13 And Counting

I remember the first time I saw Gracie. She was sitting on her foster mother’s lap, so tiny and delicate, that she looked like a doll. She was a preemie so everything about her seemed fragile and small. I fell in love with her right then and there as I stared at the tiny 3×4 inch photo in my computer screen; engraving her sweet face on my heart forever. Truly, it was love at first sight and I was bound and determined that she would become our daughter. I thank my lucky stars that my dream came true because everyday with Gracie has been a delightful dream with a mixture of happiness, joy, and a pinch of awe thrown in for good measure. She truly is amazing!

Today Gracie turns thirteen. It is hard to believe that I will never again be raising a mere child. Instead, I am guiding young adults towards the time when they leave the nest…hopefully for good.

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Since Gracie is a now an official teenager, it means I have four teens living in my house. Maybe I should say co-existing, as war could erupt any minute when you are stepping through emotional teenage land mines which are scattered, undetected, here and there. Gracie assures me that she will not act like a teen but she is already rolling her eyes and using THAT tone of voice which indicates that somehow I have become the absolute dumbest person ever to live on this planet. Forget the 55+ years of experience, the college degrees and my affable personality…I am soon to be regulated to the status of something below pond scum.

While I am excited about someday becoming an empty nester (finger crossed) I do have to admit I miss those times when my children thought I could do no wrong, when they believed I was smarter than G*D, and when the little things I did brought them such pleasure. Those were simpler times though I didn’t recognize them as such. I often viewed them as chaotic with all the meltdowns that two children with autism could bring. But now… well, even the meltdowns don’t seem quite as bad as when I was in the midst of them and I can look back and be proud of how I handled some situations that would tax the patience of a saint. Not to say I handled them all well but I did GOOD ENOUGH and that is just fine with me at this point in the game.

Today is one of those momentous days. Time and perceptions will shift for both Gracie and I as the label of TEEN is applied like a gooey sticker to her soul. May we each grant the other grace and dignity in the coming years as she grows wiser and my brain cells shrink in number. May we create memories that sustain us and may we see the best in each other instead of the worst. For the teenage years are upon us…may we both survive them with patience and our sense of humor intact! And may Gracie happily survive the impact that autism has on a family and a sibling..she has done a remarkable job thus far.

Happy Birthday My Sweet, Talented, Gracious, Fun-Loving And Hard-Working Baby Girl! You are my Superhero!

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A Knight’s Myth

 

You are no longer mine

Even though you are still here

In this castle you don’t want to be in

With a woman you don’t want to be with

With children who, well,…. who knows what they realize

But soon their lives will change

Their innocence forever gone

Wiped away by male menopause

That dreams of lusty new love

Perpetual hard-ons

And fireworks that light the night sky

With love’s first kiss

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You insist you are not angry

“Look how quite I am”

“Look how composed”

Head down, eyes masked

Yet the words you CHOOSE sting

The heat charring them before they leave your mouth

I know that you will not admit the anger

Because it would make you appear

Flawed to yourself

And you cannot have anyone think you are

Anything less than

Perfect

Gallant

Charming

Noble

A Hard working

Self-Sacrificing

Christian Man

With all the Qualities

That a knight is supposed to possess

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And you have to see yourself in this way

To like who you are

Because if you really looked deep inside

You would be devastated

By the little boy inside of you

Who cries out from pain of

An abusive mother

And an absent father

And a self that has been lost for so many years

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You think you have found yourself

Now that you have found your voice

But you have only skimmed the surface

Of your deep lake of hurt and anger

That drives you to change

EVERYTHING

But your deepest self

Because you are afraid if you really had to examine

The truth of who you are

And where you came from

Your tears would flood this earth

And there would be

No one there to dry your tears

And stop the carnage that you are creating

Maybe someday you will become like

That Knight you so desperately try to emulate

By being brave, true, and loyal to yourself alone

And by slaying that ancient dragon

That lives within your soul

But you will have to cross deep rivers

High Mountains

And Low Valleys

To get to the place

Which brings you peace

But by then

The castle will be empty

The princess gone

And you will have fought the battle

But lost the war

Everything you once loved

And everyone who loved you

GONE

And you will be

But a mere man seated at

The Roundtable all alone

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