Tag Archives: frustration

Pen vs. Computer

maxresdefault       And today the Pen wins!!!  This is my first blog post in a long time and let me tell you why. Technology.  I knew that since I hadn’t used my lap top computer in a while, passwords would be changed, systems would need updated and it would simply take time to get back on track after a summer break.  I had no idea how frustrating it would truly be!

This morning I woke and I did my typical routine.  Fix a cup of tea, head to my dining room table, open up my Bible and my journal, pick up my favorite pen and write.  It’s as simple as that.  At one point, I wanted to see a dictionary definition of “integrity” and I stood up, walked across the room, got out the dictionary and looked it up.  Easy Peasie.

After spending time in my devotions, I decided to blog.  I have a routine for that too. Different room, different tools, different mindset.  I head upstairs to my studio to turn on the computer.  Took a long time to power up.  Typed in my password.  Incorrect.  Typed same password in a few more times.  Incorrect.  Tried various other passwords I sometimes use. Try Again.  My helpful computer told me that I needed to visit the website to reset my password.  However, I can’t sign on to visit said website.  Head back downstairs to the desk top computer, thankful I even have a desktop computer and begin the process to reset the password.  After receiving the reset code in an email, I can enter it in and set a new password.  Not enough letters.  Needs to include a number. Case sensitive. Not a password I have used in the past.  Finally, I have a new password. I am hopeful that I can remember the password. I can now simply head upstairs and start up my laptop.  It runs slow.  I’m sure there is a reason why but I don’t have the time to figure it out (since I spent most of my morning trying to get it to turn on.)  Finally, after a few more trips up and down the stairs, I am able to type a document on my computer.  Aaaaah.  Computers are so much more efficient than a pen and a piece of paper…..but maybe not in this house!

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Nowhere To Go !

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No.  There sincerely is nowhere to go.  We have a son with Reactive Attachment Disorder.  What does that mean?  That he appears healthy and well on the outside and his inside is filled with rage and distrust of his parents.  To others, he’s a sweet, charming, polite kid.  To his adoptive parents, he’s a thief, a liar, a menace.  And we took an oath and adopted him.  Because of his early care…or lack thereof, he has decided he doesn’t want to love, so anytime, he finds himself getting closer to us, he does something off the wall to push us away.  And, each time, the push needs to be harder.

As a toddler, it was little sneaky things, an extra cookie, a stolen video game.  Now, as he approaches adulthood, it’s a stolen gun, a broken TV, and stolen car keys. No matter how much instruction he receives, it appears he will self-destruct in his own poor choices.

I’d like to say that this morning was a shocker,  but this traumatizing event was just another day.  Another day of lies, violence, screaming and a home ruled by mental illness.  I’d like to say this is rare, but quite the opposite.  This is how we live.

The aftermath leaves us bruised physically and scarred emotionally.  He rages, goes to school and I receive a message that says, “Paul has arrived safely at school.”  I reply, “Mom and Dad are traumatized at home.”

So, after a morning like this, what are we going to do?  Should we heed the advice of many caring concerned people?  “He should go somewhere.  You can’t live like this anymore.”  I agree 100%!  He should go somewhere.  Where might that be?  There is no special place for kids with RAD.  There is no known therapy that cures, there is no group home, there is no residential treatment facility with an open bed waiting for me in this moment.  In this moment, there are text messages to friends who may or may not be able to help me today.  A wait for a psychiatric bed in a hospital could be months, a call to the police would have them responding to a situation that would diffuse on their arrival.  He needs to go somewhere. There is nowhere to go!

Last week I had the opportunity to attend a RAD support group meeting where I met 8 other families with kids just like mine.  Amazing.  We are not alone though society would think we were.  We live in an isolated existence where no one knows what to say or how to help.  We laughed, we shared war stories, we understood.  Today I texted a few of those families and received cyber hugs & support.  Today’s pain is raw and feels huge….however, when I am once again in the comfort of these special people in a few weeks, we will have a laugh over my husband burning my son’s mattress.  We will joke about us finding the hidden cigarette lighters and stolen cheese. We will laugh on the outside and cry on the inside as we each lose a little more hope each day.  Oh, how I wish that didn’t have to happen.  That we could have hope.

A statement my 9-year-old reminds me of at times like these: “Mom, remember you always say, ‘You can steal my money, but you can’t steal my joy!'” Maybe I need to apply it to hope.  “You can steal my cell phone, but you can’t steal my hope.”

This morning I screamed, I cried, I raged.  Today I will post scriptures and messages about patience and will strive to look at things above.  I will try to turn the events around so that I can survive another day, another evening…even another moment.  I will search deeply for hope.  It is my HOPE that we will all make it through.  That we will somehow heal, somehow cope.  There is no place to go.  We have to figure out how to live and have hope here. “Be patient, then brothers and sisters, until the Lord’s coming.” Someday we will be able to go there.

Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.
Yes, my soul, find rest in God; my hope comes from him.
Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains. You too, be patient and stand firm, because the Lord’s coming is near.  –James 5:7-8

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Reactive Attachment Disorder – What is it?

My recent post,Reactive Attachment Disorder stinks! created some buzz among my readers.  Those who have a child with RAD, understood and probably felt some relief knowing that others are in the same boat.  Others, those who know my son personally, find it very hard to believe that life in my home is as difficult as it is sometimes.  He simply does not display these behaviors around others.  BUT, that doesn’t mean that it is not true.

I am the parent of a special needs child, however, my kids’ disability is the inability to receive love from his parents.  This makes treating this disorder extremely difficult.

While researching for a fact sheet or a tip sheet on Reactive Attachment Disorder, the shortest one I found was 3 pages in length.  Who wants to read that?  Even those of us in the trenches get bored with all of that, so it is my hope to share some information, the Cliff Notes of RAD – In a nutshell:

Paul has RAD which means that he did not develop an attachment with his primary caregiver early in life.  This lack of connection influences his physical, neurological, cognitive & psychological development. It produces ongoing feelings of rage, deep shame, a lack of trust and a fear of attaching to anyone. He has an inability to understand cause and effect and a compulsive need to control everyone and everything. He has difficulty regulating his emotions and his behavior.  His fear, rage & distrust is so bad that he may explode when a limit is set or a line is drawn.  He truly believes that he will die if he is not in control.  He was deeply hurt, afraid & lonely as he survived severe neglect.  He developed strategies to survive this time in his life and those strategies are to manipulate and control any situation he considers unsafe.  The battle for control is constant.

So, if I ask Paul to put his shoes on…he may feel out of control.  He doesn’t put his shoes on so that he can control that situation.  Even the smallest of things.  If asked to put his plate in the sink, he may put it beside the sink to remain in control.  If you don’t live it every day, you may not even notice the little ways in which he controls things.  Some subtle attempt to control can be interrupting, asking someone to repeat themselves even when he heard, mumbling, ignoring, fidgeting, refusing to put forth appropriate effort, & telling lies.  Children with RAD often maintain control by demonstrating learned helplessness.

You may never see Paul rage.  He’s not angry at you…he’s not even angry at us, but he is angry at the situation of neglect that he experienced and he will take it out on those who love him the most now. You may get the opportunity to see some of the other symptoms:  Lack of guilt or remorse, blames others, difficulty with cause and effect, stealing, lying, manipulative, lack of empathy, poor impulse control, overly friendly to strangers, mood swings, tantrums, refuses to do assignments or does them poorly, & has abnormal eating habits.

That said, I love Paul.  I knew I was meant to be his forever Mom after just a few weeks of knowing him.  I knew I could make a difference in his life.  We’ve come a long way…yet we have a long way to go.  Please keep us and all those who are parenting children with this confusing diagnosis in your thoughts & prayers.  We need them.  Thank you for understanding that this disorder just might be something you will never understand.

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Do NOT suggest Time Out.

Today Paul and I had dental appointments scheduled.  As I walked from the car to the door of the office, I could hear the voices in my head.  “He doesn’t do well with brushing.  Have you taught him how to floss?  Does he have toothpaste of his own he could use?  We’d like for him to try and brush after every meal.”  I hear the voices.  I hear the condemnation.  Paul does brush (& I use the term very loosely) every day after an argument that lasts longer than the actual brushing.

“Did you brush your teeth?”
“I will.”
“When? The bus is going to be here in 3 minutes.”
“I said I will, ratzenfratzengobblegook.”
“what did you say?!”
“I’m talking to myself.”
“If I can hear you it’s not to yourself!”
“It was to myself stop listening.”
“Stop arguing and brush your teeth.”
He heads to the bathroom, the brush is out, the water runs…
“You need to go, the bus will be here!”
“I know, and see, I brushed my teeth.”

Really?  That wet toothbrush simply touching his teeth is called “brushing?”  This scenario plays itself out in about every daily activity that we try to teach Paul.  At 16 he has been taught and is capable of brushing his teeth, but his special needs brain refuses to allow him to comply.  It is so much more entertaining or controlling for him to refuse this daily task.

So, as a parent of a child with more letters in his diagnosis than are in his full name (which he truly can’t spell,) I often want to have a neon sign that I wear on my head that I can change to fit a plethora of situations. It would come in mighty handy when meeting with doctors, social workers, & school employees to name a few.  This idea came to me when we had a meeting with our fifth Behavioral Specialist.  At the intake meeting I noticed that Paul’s file had bold letters written on the first page.  It said, “Do NOT suggest time out.”  It made me laugh because it had been written by the previous Behavioral Specialist when he suggested Time Out.  At his suggestion, I educated him on all that we had tried.  Did he sincerely believe that by the time we had been assigned our 4th BSC (Behavior Specialist Consultant) that we had not tried time out?!  Did he think we were idiots?!  Paul is our fourth child and he wants to suggest Time Out?  Like we hadn’t already tried Time Out, Time In, Positive Reinforcement, Sticker Charts & every other thing that we read about in books, magazines and even in classes we attended?  I let him have it with both barrels.  I told him in painstaking detail all that we had tried and failed at.  By the time a BSC enters your home, it’s pretty evident that typical parenting techniques are not going to cut it.  SO, the “DNSTO” got as much attention as a DNR (Do Not Resuscitate) would get on a medical file.  I was relieved.  No one was going to state the obvious to me again.  Yet, they do.

Pediatrician:  “He appears to be gaining weight.  Have you tried limiting screen time & having well balanced meals?” (Yes, as a matter of fact, I attempt to feed my whole family well, but he steals bacon and eats it raw and chases it with a bullion cube dissolved in water.)

School:  “Paul should wear a coat on cold days.” (He didn’t have time to grab it because he was busy arguing about brushing his teeth.)

Well Meaning Clueless People: “He shouldn’t be pushed so hard,  Have you considered medication? You take it too easy on him, Have you thought of getting him off his medication?  He seems to be tired all the time.  Have you ever set a bedtime for him? He seems to do fine at my house…….BLAH BLAH BLAH.

Maybe that’s what the neon sign should read. “Blah, blah, blah.”  Or maybe just “I tried, do you want to?”  I sincerely believe people do mean well and think they are telling me something new.  And, if there is anything new to try, I certainly would, but after 14 years on this journey to wellness, we have tried about everything (I better save that for another blog…Wilbarger Brushing & Auditory Therapy cannot be explained in a few sentences.)   What we need is someone to encourage us to keep trying, to keep fighting the good fight.  Someone who assumes we’ve tucked him in at night, taught him how to brush his teeth and provided him with the necessities of life.

SO, today they did.  Those voices in my head were ALL wrong!  Today Paul and I had dental appointments scheduled.  The voices I heard were real voices.  They said …..drumroll please…”Paul’s a great kid.  No cavities.  You’re doing a good job.  That kid always has a smile on his face, does anything ever get him down? He was worried that he wasn’t doing a good job, but his teeth look fine.”  He must have good genes (They’re not mine) where teeth are concerned. It certainly isn’t due to his diligent dental hygiene, that’s for sure!

Thank You Dr. Bonnett and Staff.

And, if you are parenting a non compliant, oppositional defiant, child, let me be your encourager today.  I want to let you know you are doing a good job.  I know you’ve tried to convince him to wear shoes that match.  I know you washed her face before you left the house.  I can tell for certain that his choice of dirty sweat pants was not yours.  Some of us fellow parents in the trenches can see your invisible neon sign that says, “You don’t get it.”  But, relax, I do.

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Big Block Sing Song

I started my day today with Disney Jr. playing in the background on the TV. I would personally like to thank the Big Block Sing Song for placing the song “Mad” in my head to repeat over and over all day long. However, after repeating this mantra as I rushed to get Kaylee on the school bus….we missed it anyways…I realized that if the younger audience would heed the wisdom of this song early, they may not need as much help as adults.

Mad – lyrics- by Big Block Sing Song – Disney Jr.
Have you ever been so angry you could Stomp Your Feet?
Have you ever been so mad you get tears?
Have you ever been so angry that your head gets hot,
Feels like steam shooting out of your ears? Continue reading

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