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.

 

 

 

I Wonder If…A 10-Minute Poem Challange

At night I hear

Your ragged breath

And wonder if…

It was soft and peaceful

With her

I wonder if…

You touched her

In that soft and gentle way

That you used to stroke me

When we made love

I wonder if…

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Her lips tasted sweeter

Than mine

Her moans were

More urgent

Than mine

And if…

She reached for you

With a desperate ferocity

That I once had for you

I wonder if…

Her “LOVE” for you

Was conditional

On ALL the money

That you sent to her

Or if it was true

That she loved

That middle-aged man

That I once thought

I would grow old with

But now am not so sure

I wonder if…

You should go

To her

With Our Children

Introduce them to their

“NEW” mommy

And see just what she is made of

See if she still dresses

As if on a red carpet

When the only thing admiring

Are teens with worn out

Attitudes

And autism controlling

Every aspect of her life

I wonder if…

She would still greet you

Half-dressed

A woman with no cares

Pleasing you sexually

As you lay back

Watching as she went down on you

Expecting nothing but your

Total devotion to her family

And your money in return

Or would she turn into me

Right before your eyes?

Old and overweight

Using a “STRONG” voice

And having expectations

Of things besides

A big dick

And gifts and your time for everyone

But her

I wonder if…

Your dream of the perfect

Submissive youthful woman

Would suddenly be

Popped like a giant balloon

Air bursting out

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Like flab over her bikini

And if…

She would stay

Calm, peaceful and serene

Peppy and pleasing

On this merry-go-round

That we call our lives

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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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Saying YES To The Ring

I have been pondering for the past couple of days how to write this post. I have started it, deleted it and started it again many times. For at this point, what I am about to write is embarrassing, very confusing, and probably tiring to all who read my blog.  Frankly, I know that if this on-and-off again relationship was happening to a friend or my daughters I would say, “Get the fuck out! You deserve a man who wants all of you all of the time!”

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Yet, sometimes life is not that cut-and-dried no matter how hard we try to make it so. Over thirty years of marriage is a long time together. It is doubly hard when you have two boys with autism and who do not do well with change. Add to that three children who have already lost their original families and splitting up becomes fraught with minefields that just are not present in most families.

Now to tell you this particular story I have to take you back to October. It was then that B asked me what I wanted for Christmas. At that time I flippantly told him a commitment ring but frankly I thought that the possibility of receiving one was nil. Winning the lottery had better odds. And anyway, who doesn’t like a ring, right, so what was the harm in asking?

Fast forward to Christmas night. As we were winding down from the days festivities I told B I thought we should tell the kids tomorrow that we were separating. Tears came to B’s eyes and all of a sudden he called the kids down to do THE board. You see, every year on Christmas day and July 4th, we measure our kids to see how much they have grown (seems we will need a longer board for Andre next July.) Then, just as the kids were about to go upstairs B told them to wait and proceeded to say. “Hey, guys, there is one more present here and it is for your mom.”

With that, he walked over to his briefcase and pulled out a jewelry box and in it sat a woven silver and gold ring. Nothing elaborate (that is not who I am) and nothing too expensive (not me either). As I looked at the ring in shock he said something to me and the kids along the order of:

“The silver in this ring represents our Silver Anniversary (25th) while the gold represents striving toward our Gold Anniversary (50th). In this ring there are little breaks and holes that represent life and how during our lives we have to navigate through them, around them, and out of them; to get back on the path we have chosen. So I am giving your Mom this ring to show her that I am committed  and will continue to try working together to reach our Golden Anniversary.”

My first thought: Maybe he really does love me…and tears

My second thought: I am not sure I want this. Maybe it really is time to be out on my own.

My third thought: Why did he say this in front of the kids?

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Luckily, the next day was Tuesday, the day I see my therapist. She said:

“I’m confused.”

That made two of us.

So we talked about the conflicting feelings this brought up. About how for the last week every time we talked about leaving and splitting up our family we both cried. How our guts were both twisted in knots and how discussing dividing children, assets and animals was devastating. And that in this heartache we had gotten closer at least for the past few weeks but that it should be viewed as temporary.

In the end, I decided to accept the ring…for now. Instead of deluding myself into thinking this ring is a piece of jewelry that signifies B’s commitment to me for life; I have decided to view it as a day-to-day pledge until I decide otherwise.

Last night we went to our joint therapist and I asked for clarification regarding the ring, the commitment and why he said what he did in front of the kids.I will say that I received some very well thought through answers to my questions and that we both acknowledged that we have a long way to go to save this marriage if it is even possible.

At this point I have no real answers about life or the status of my marriage. What I do know is that every day we manage to make it is one more day our children have had a chance to grow older and more mature. It is one more day that we have successfully re-committed to working hard and to trying our best to listen to what is in the others heart and act accordingly. And it is one more day that we have attempted to let love win, move towards acceptance of both ourselves and the other, and its one more time that we have had the chance to try to find peace in a relationship that once had little.

Sometimes life is hard.

Sometimes life is isn’t.

And maybe, just maybe, given a little more time, the hard times will decrease and the good times will grow more frequent and blossom. And maybe someday I will realize good times and bad are just part of life and that is just the way it is and I won’t take it personally. And maybe, just maybe when the good times are abundant I will be able to rejoice in them knowing that I have done everything humanly possible to make them happen….with or without him.

 

 

 

Beets And Betty Davis Eyes

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BEETS

Several years ago, in preparation for an upcoming trip to Scotland, I started working ernestly on our family trees and found we are related to many Kings and Queens from France, England, the Netherlands, etc. Needless to say this has provoked many interesting conversations around our house.
Andre: Beets? Beets? You know I don’t like beets.
Me: You are going to have to try them. They will taste great.
Andre: I know what happened to the kings in our family
Me: What
Andre: Their mothers fed them beets
Me: Eating beets has never killed anyone
Andre: Want to make a bet? I bet if you analyzed their stomach contents you would find beets.
Me: Why Do you think that?
Andre: Anything can be hidden in beets
(Not to be outdone) Paul: Yeah the color hides everything
Andre: I am sure they were poisoned with beets
Me: Doubtful. Who would want to poison them?
Andre: Their mothers
Me: WHATTTTTTTTT?  Mothers would not poison their children.
Andre: Oh yes they would
Me: Come on, Andre. You are letting your imagination run away with you
Why would a mother do that?
Andre: Because they want the power.
Me: What?
Andre: Women didn’t have power and they wanted it. It’s been that way through history. Mothers always want to find a way to control their children. You can’t deny it can you?! And beets were the way to power.
Me: You will still be eating your beets.
Andre: Drats. I thought this little history lesson would change my history with beets.
Me: No way, dude.

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BETTY DAVIS EYES

The things your kids share with you in the car.
Andre: I think it would be awesome to be able to read someone’s mind.
Me: Why is that
Andre: Because you could do all sorts of wonderful things for them like buy them the puppy they have always wanted.
Me: Andre, you are the one who wants a puppy
Andre: I’m just saying…you know there would be one time when it wouldn’t be so good to know what someone is thinking.
Me: When would that be?
Andre: When they are sitting on the toilet going to the bathroom. I mean the things that go through your mind when you are on the toilet…well they are just not things you want others to know
Me: Is that why you spend 30 minutes at a time in the bathroom?
Andre: Might be

 

Death Of My Marriage

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Yesterday was the day that we decided to meet for lunch to exchange lists regarding how we would like to divide our property, arrange child custody issues, and the like. We have decided to try to forego lawyers and see if we can work this out between the two of us.

We slept the night before holding hands and when we woke up B tells me, “Maybe we should go back to the belief that divorce is not an option,” so when we went to the restaurant for lunch I half expected that he might give me a piece of paper that said I DO NOT WANT A DIVORCE but he came fully prepared. I guess there is a little part of me that is still floating down DE-NILE. A part that does not want to enter the raging, swirling currents of divorce that could at any time capsize my raft and suck me under the torrents of tears that seem originate at the mouth of this river.

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These days I find tears are always threatening to leak out of my eyes at the most inopportune times. Paul came downstairs and found streaks from tears that I quickly wiped off my face but he saw them and asked what was wrong. Thank goodness I am still wearing this arm sling because it hides a multitude of emotional sins that are bubbling at my surface surprising me as the burst forth when least expected.

“I’m okay, sweetie. My shoulder is I just hurting me right now,” has become a great response when my sad and raw sentiments threaten to take me down to places in which I do not want my children to see or dwell.

After Christmas we will detonate their world by blowing up all they believed to be right and true to smithereens. They will never be the same and I am afraid that my two sons with autism will regress/rage as a way to handle the major changes that their lives will undergo. Change is something that is very hard for people with autism to endure.

I also feel terribly guilty. As adoptees my children have already lost the first parents, their first country, their culture and their language. We were suppose to be their Forever Family and we have let them down. Paul’s therapist tells us his biggest fear is ending up alone with no family and I am sure it will set off feelings of abandonment for him. This is one of the things I am finding it difficult to find peace about and find the compassion to offer forgivness towards my husband destroying our lives together.

Last night B and I got into bed. We held hands all night and we both cried on and off. It was a night in which sleep eluded us but sorrow did not as it swept us up in its tight grip and kept any sweet dreams at bay.

Today is a new day…I think I will go back to sleep.

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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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Dance

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Tonight I chaperoned a high school dance. The girls were glitzed and glammed, each out doing one another in the hair, makeup, and dress department.  The boys….well they were typical  teenage boys…nerdy, sweet, and 100 years behind the girls in just about every way imaginable. Most of them sat together and played video games while the girls stood around whispering to each other, laughing, and talking the talk. Meanwhile the boys who weren’t gaming, looked somewhat green around the gills, as if they were in intense pain trying to outdo one another to impress the girls with puffy-chest macho displays. Frankly, it’s a wonder that the two sexes ever come together at all.

After spending the first half of the evening checking the kids in (what do you mean you forgot your parental permission slip) I decided to head over to the dance floor in hopes picking up some new steps. Unfortunately, watching teenage boys move to the grove is like watching an elephant attempt to play the kazoo while dancing the lead in Swan Lake…there is NOTHING that can make it look pretty. Hips go one way while butts go another and I swear I saw a couple of heads do a 360 while sitting squarely on their shoulders. But the worst thing was the fact that not one of them could keep tempo to the music. It was like watching a little old man crossing the street using a walker…one speed only… with head bent and body stooped their bellies almost dragging on the ground. The ones still moving upright were sweating like Trump’s Communication Director when the President is in front of a microphone… never sure what ungodly thing might happen to destroy all their carefully laid plans.

Yet, with all the hormones on high alert things stayed sweaty but calm and everyone was having a good time, chaperones included. Something about the unchanging ways of nervous teens brings you back to your own school dance and you realize just how far you have come!

Of course, there is always some sort of drama. At our school dance this is the End Of The Night Song. It is the one and only slow dance that the deejay plays the entire night. Stomachs tense and butterflies alight and the girls begin to giggle as the time draws near. If the truth be told no one wants to dance the last dance and everyone is crushed if they don’t. As the first notes of Fade Into You began, I was surprised to feel a tap on my shoulder. When I turned around Paul was standing there.

“Would you like to dance, Mom?” he asked strong and sure in his choice.

“Me?” I asked.

“Sure. You’re the prettiest girl here.”

And as I stepped into his arms I knew without a doubt that all those years of hard work raising two children with autism had paid off.  I was obviously doing something right in this life and was finally reeping the rewards.

 

 

WE

 

We have built houses together

Planted a vineyard and gardens

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Raised six kids together

We have survived your mother

The death of parents

And your brother

We have moved

Numerous times for your career

Starting over again and again

Just knowing each other

In a city of a million faces

Finding comfort and love in that

And we have stuck together

Through so much adversity

Pain and sorrow

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We have traveled the world together

Had much happiness and joy

Done things as a couple

That brought us closer

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We have struggled

Raising two boys with autism

Put their needs ahead of our own

Done everything possible to give them

The best chance for a good life

So why it is now

After all the hard years

After all the time we have sweated and pushed

And fought the school system

After life and death

Hardships and pain

You want to abandon

Our future

And all the good times

We dreamed about

For so very long?

We’ve slogged through

The Rough Times

Taken so many wrong turns

But you don’t want to share

In the best that is to come…

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The walking along the beach

Holding hands

Visiting Grandchildren

Kayaking the rivers

And taking art classes

Working to save the river

And the seals

Old age sex

And wrinkles

And watching with a tender heart

Fingers intertwined

When one of us takes our last breath

Being there for the other

As one passes to the other side

To the unknown

The other left grieving and lonely

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We’ve been through the hard times

Why can’t we share the reward

Of all we worked for together?

When life is finally getting easier

Why should a future wife

Get all the benefits

Of our hard work?

I do not understand

I will never understand

And don’t expect me to…

Don’t ever expect me to!

 

 

Yesterday I had a private therapy session with our third and final marriage therapist. He was highly recommended by my therapist and she believes he can help because he does in depth therapy examining both partners pasts and seeing how they effect the dynamics of the relationship. He looks at attachment in childhood and how that influences attachment within the marriage.  I think he is a good fit but I was exhausted after our session. I felt like I had run a marathon and got run over by a truck at the end. Working on psychological/relationship issues is hard work if you are honest with yourself and others.

Recently I have been reading the book Hold Me Tight by Dr. Sue Johnson. The book jacket says ” Forget about learning how to argue better, making grand romantic gestures, or experimenting with new sexual positions. Instead, get to the emotional underpinnings of your relationship  be recognizing that you are emotionally attached to and dependent on your partner in much the same way that a child is on a parent for nurturing, soothing and protection.” It is an interesting book and I see B and my relationship on so many pages and it saddens me. But we both keep trying.