I WANT MY BOY BACK!

Mostly I write when I am inspired or feeling strong and defiant, ready to take on the autism-bad and replace it with hope and quirky-good.  To conquer fear, doubt, shame, guilt and win.  Today, however, I am writing to throw one big freaking temper tantrum.  Ready?  This is me screaming to the universe:

I WANT MY BOY BACK!! 

It is not fair, God!  Not fair!  I don’t know what you’re playing at or why you chose me, but I sure as hell am ANGRY at you today.

We have been flexible, we have been compliant, we are following the rules– insurance rules, treatment recommendation rules, societal rules.  Alex is now living at a new residential treatment facility.  His father and I have confidence in the new treatment team and the staff.  We are optimistic that with their guidance, Alex can learn to control his aggressive and violent behaviors and be able to live at home with us. 

Once again, we’ve made the transition to something new, something “better.”  We have taken the please-give-us-hope-because-we-are-beaten-down-and-we-don’t-know-what-else-to-do-for-our-precious-son option.  Yet again.

Things have gone well so far with the new place.  The treatment team cautiously advised that they will help Alex learn to control his behavior and aggression to a reasonable degree, we can’t expect perfection.  I stated I could handle anything about the autism, anything about the plan.  Just not violence toward me or his sister. 

Agitation?  Fine.  Screaming?  Fine.  Non-compliance that doesn’t lead to dangerous situations?  Fine. 

But not the violent lashing out, not the glazed-over rage and intense physical aggression.  No more blood, no more deep bruises that turn 17 colors before finally fading into a semblance of age spots on my hands and arms. 

No more.

We had a good visit on Sunday.  Alex was troubled earlier in the day by having to return to his dorm after his first overnight with his dad in a month.  He wasn’t particularly content when I arrived, but I could tell he was glad to see me and Hannah.  During the first two hours of our visit, I knew that Alex was at least comforted by our presence, and at least mostly enjoying our activities.  We talked and interacted, Alex listened to me and responded, we were allies.

After running around the playground acting silly, we returned to Alex’s dorm for a quick break so the girls could use the bathroom.  Another resident was crying and screaming:

“I want to go home, I want to go home.” 

Alex wants to go home too.  He reacted with screams.  When Hannah and I finished in the bathroom and returned to Alex, he was sitting relatively calmly with his staff.  It was clear he was still upset by the plight of his friend, but he appeared to be handling things okay. 

Without thinking, I approached him and leaned over close to talk to him. 

I said someone would help his friend, that the staff were all working to help his friend be okay, and that the best thing we could do was to have safe hands and be calm.  Things I’d said a hundred times before over the last year.  Alex listened, he leaned his head next to mine and seemed to breathe easier.  I kissed his hair.

I felt safe and confident, being so close, because I knew we were on the same page and he trusted me. 

I knew he was agitated, but I thought the worst was over.  I felt like the mom I’m supposed to be, the one kids turn to when they want to talk or when they’re confused or sad.  I kept talking to Alex in a reassuring voice.  We were together in this moment and our situation (the day, the living arrangement, the vibe) wasn’t ideal, but we were okay together.

I got that wrong I guess. 

Maybe everything was wrong and I didn’t see.  Something must have been terribly off about my perceptions because what happened next came out of the blue and was bad.  Alex stabbed me in the face with a pen just under my left eye.  He drew blood.  Another half inch higher and I could have lost my sight.  I had seen the pen on the table, but didn’t think twice about it.  I hadn’t been scared, I thought I knew he wouldn’t do anything to hurt me.  For the first time in a year, I had been so blissfully ignorant of the danger. 

I’d felt like we were back to the mother-son relationship we used to have– the time when I felt confident enough to tackle anything, when our daily circumstances could be less than ideal but we could be together and working on it and it would be enough.

Today I am sad, I am angry.  Today I hate autism.  I hate “intermittent explosive disorder” and every other name that childhood violence is called.  I hate feeling traumatized and out-of-control after a simple visit with my children to the playground. 

But what hurts the most is that I yearn to feel safe and protected, and yet I don’t want to be protected from this. 

I don’t want someone to “keep me safe” from my son.  I don’t want to have to watch for the pens on the table, to be an arm’s length away.   I want to be able to kiss Alex’s hair and talk gently to him and be where he is.  I want to do what I know how to do– to merge my “clinical” skills and my “mom” skills and just be the mother I was born to be to this one particular boy.  My boy.  I don’t want anyone to move me out of harm’s way. 

I want the autism to go.

I JUST WANT MY BOY BACK!

the mom i was

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Where was God?

Since the Sandy Hook Elementary School tragedy on December 14, my heart– like the hearts of parents across the world– has been heavy.  I have not let my second grader out of my sight since I picked her up from school on Friday afternoon.  We have cuddled more, talked more, touched more.  I have listened more.

And I have thanked God for every minute because I know how precious and un-guaranteed our time together is.

Before I collected Hannah at school on Friday, I went to my son’s residential treatment center to pick up clothes and medicine for his regular weekend visit to his Dad’s house.  Alex had been in the hospital because of stomach issues since Tuesday afternoon.  He was discharged after lunch on Friday.

When I left Alex’s room and crossed the hospital lobby Friday morning, I said a silent prayer of gratitude.  We are blessed to live close to a world-renowned children’s facility, and everything about it is exceptional.  The lobby has wide open space and designs that catch the light and make patients feel like the folks who work there don’t have to commute to work because they must just descend from the heavens right through the skylight, like angels.  Everyone– from the security guards to the surgeons– loves children and cares for their families as if it were second nature.  When I walked through the hospital on Friday, I felt comforted, cared for, safe.

That was before I heard about the shooting.

On the drive back to our neighborhood with Alex’s things that had been laid out on his bed by his staff neatly tucked into a bag beside me, I listened to our local news station and began to cry in the car.

Eighteen children, they said then.  It couldn’t be.

Between the ages of 5 and 10, they said then.  No, no, no….

A familiar pain pierced my insides, the sort of heartache that makes new parents leave the movie theater after a child-abduction scene or stop eating beef when they hear a news story about a school-age kid dying after ingesting a half-cooked piece of hamburger.  You know– the kind of pain that is not from your own family experience, but that threatens your security anyway.  That makes you want to hug your kids right-this-minute and find some-kind-of-comforting words to say to the other parents, because you know it could easily be you who needs the comfort-that-no-one-can-really-bring-you-no-matter-how-hard-they-try.

I dropped off Alex’s bag and sped to Hannah’s school.  More cars than usual were waiting early.  I walked to the front lawn and stood with my hands in my pockets, trying to keep casual and not let the thousand words in my head explode on the scene all-at-once.

I looked around at the other parents, a beautifully diverse crowd of every color, background, family arrangement.  I looked at the school and the artwork in the windows.  I looked at the houses across the street with their holiday decorations and shutters and shrubbery. 

I realized in a more-than-speculative way that no one, anywhere, is really immune from the tragedies that hit the news.

I caught the eye of Hannah’s first grade teacher and she crossed the lawn to meet me.  I had been keeping friends updated about my son’s health and sending prayer requests over the previous days and she was happy to hear that Alex was out of the hospital.  As she embraced me, she said:

“I gave Hannah two big hugs today– one for her and one for you.”

Again, I felt comforted, cared for, safe.  And grateful.

Hannah and I spent a quiet “girls’ night” watching movies, eating popcorn and chatting with friends who were staying with us for the weekend.  I thought about how we will talk about this terrible thing that happened, and I wondered what she will hear at school on Monday and what questions she will ask.

As the weekend continued, I learned more and more about what happened at Sandy Hook.  Now they were saying twenty children…

… first graders….

Last year my first-grader Hannah amazed me with what she learned and how she grew.  She was a compassionate, beautiful light in our family and my proud mama heart secretly felt there was no way she could ever impress me more.  Then came this year, when she has blossomed beyond my expectation.  I listened to more news stories and I cried for the parents who would never know that second-grade feeling.

I choked through a video of heroic teacher Kaitlyn Roig explaining how she hid her students in a tiny bathroom and told them they were loved because she believed that was the last thing they would ever hear.  I sobbed reading about 27 year old Victoria Soto who hid her students in cabinets and closets, saving their lives by telling the shooter the kids were in the gym before he shot and killed her.

Aubrey told me I had to stop watching the news and reading the stories.  But I didn’t.  Like everyone I knew, I was searching for some meaning, wrestling with questions no one can really answer: 

Where was God in all of this?

What precipitated such horror?

How would the press, the doctors, the “specialists,” the politicians, the parents respond and explain?

When the reporters said the words:

“… autism spectrum… mental illness…”

I looked for the first time at the face of the 20 year-old killer.  I have only seen one picture of  him because I cannot bear to look any closer.  In the picture he looks young, skinny, with a mop of brown hair.  More innocent than his actions would reveal him to be.

And more like my son than I had expected.

I read a beautiful post at ProfMomEsq by the mother of a 5 year old daughter on the autism spectrum.  She writes:

“My little girl has so very much in common with the 20 young lives cut short by a senseless act of violence.”

She goes on to describe her heartbreak at hearing implications by reporters that the killer may have done what he did because he was somewhere on the autism spectrum.  When I read her post, I felt heartbroken too.  There is something about people making the connection between autism and what happened to 20 innocent children at Sandy Hook Elementary that is not only wrong and unfair, but that saps the energy of parents like me, somehow twisting the sadness we feel into anger and defensiveness.

And the truth is, as Prof Mom Esq plainly and clearly stated:

“Autism is a neurologic disorder; it is not a mental illness.”

Still, even as armed with information and resources as I am, a choking, cold grief encompassed me last night as these different stories and images came together in my head.  My daughter, so like the child victims.  Her compassionate teachers and suburban school, so like Sandy Hook Elementary.  The parents…

And a troubled boy in a photograph who did this terrible thing.  A person we all will speculate about and condemn and probably never, ever understand.

Autism does not cause violence.  And violence does not always come from expected or explainable places. 

My autistic son is not a murderer and I have to believe he is not in danger of becoming one.  But he is challenging and misunderstood and often troubled.  And I am a parent who has been asking for help for him continuously since he was a toddler.

How many other parents are out there, asking for help for their troubled children right this minute?

Another post crossed my desk today, written by yet another mom, Liza Long, with an important, heart-wrenching, difficult-for-most-to-imagine perspective.  She is raising a son who has intense behavioral challenges and she questions the available resources for those with mental illness.  She writes:

“In the wake of another horrific national tragedy, it’s easy to talk about guns.  But it’s time to talk about mental illness.”

This mother passionately advocates for “a meaningful, nation-wide conversation about mental health.”  And I agree with her.  We need to talk openly about the needs of families and individuals in crisis so we can find things that work instead of creating more problems for them within a flawed system.

So where was God on Friday?  And where is our Higher Power, the Universal Good now?

I remember a story years back about a special needs child who was given a chance to play in a little league baseball game.  Thanks to his peers who made sure his attempt at bat was successful, he scored a home run.  The boy was overjoyed of course, and his father later remarked that he felt the true miracle was not so much in how his son experienced that day, but in how the other kids came together to make it happen.  The boy’s gift to the world– what the father believed his son was put on earth to share– was the opportunity for such miracles to take place.

I believe that is where God is– in the middle of those miracles.

God is between the conversations we are having right now.  He is in the pain we feel, in the ways we are compelled to reach out to each other.  He is in the actions we take to give another person the sense of comfort, security and safety we so desperately crave.

There is nothing that can be done to put the broken pieces of the tragedy at Sandy Hook Elementary back together the way they were.  Humanity is broken and imperfect all the time.  But perhaps all the bits and pieces, the grief and the sorrow can come together in a way no one could ever have predicted.  Perhaps God did not desert us.  Perhaps the miracle is not hidden somewhere in those horrific events or in all those circumstances that came together in all the wrong ways to cause unimaginable suffering for the Newtown, CT community.

Perhaps the most important miracle is yet to be uncovered.  

Maybe it is in the way we will come together now to make a change,

to create a different future,

to have a “nation-wide conversation,”

to open our minds and hearts to the misunderstood,

to protect the innocence of children,

to heal the traumatized…

Perhaps God is here.

unexpected miracles 003

I am grateful for everyone who has felt compelled to write over the last 48 hours and for their honest, raw, heart-felt words.

I have found my higher power in-between your letters and essays, and in the courage you found to share your thoughts.

Thank you.

The Incredible Shrinking Woman….

autism home rescue 1102201201

… and the Alarming Growing Autism Rate.

That’s what this post is about.  Same as always– autism, my son, my mother anxieties.  …

<heavy sigh>

Recently I read an article about chemicals that may possibly play a factor in the development of autism.  You can find the link here.  Yes, we all know that autism is….

“… thought to be caused by a genetic predisposition combined with unknown environmental factors…”

Read the above article.  It is disturbing.  Some of the chemicals I’d heard of, some were completely off my radar.  And all the while I’m scanning this piece of news, I had a little movie playing in my mind.  It was the scene in the film “The Incredible Shrinking Woman” where scientists tell Lily Tomlin’s character:

“You are shrinking from a combination of…”

and then proceed to name a huge list of products like hair spray and household cleaners and soap etc etc, all things produced by her husband’s company.

Great.  More confirmation that no one really knows.  Lots of acknowledgement that holy God! we have a serious autism epidemic on our hands. 

So why is it that many families still have to fight for autism treatments?  Why there are still so many professionals who just have no idea how to help autism families?  Why has no one banned chemicals we *know* for sure are so super-toxic that they’ve damaged an entire generation of children?  I don’t have answers. 

<another heavy sigh>

When I first read the article, I flipped through that big “Things I’ve Done Right/Wrong as a Mom So Far” file in my head and skipped right to the section on “Ingestion (Food, Chemicals, Air, Water)” 

Then as soon as I began to lament the tons of Cheetos I craved while pregnant with Alex, the tuna fish sandwiches from my employer’s cafeteria that I thought were an excellent source of protein, and all the microwaved lunches in plastic containers….

I stopped.

autism home rescue 1102201202Yes, more research needs to be done.  But I’m going to leave that to the scientists.  In the meantime, I’m gonna be the mom and I’m gonna pray for my kids and love them and want them to be with me forever.  Just like Lily Tomlin’s kids in the movie who watched her float away, a tiny wisp who disappeared into a chemical puddle only to return to normal size.  Miraculously.

Then I’m gonna fast forward to the end of that movie in my head and remember how after the Incredible Shrinking Woman returned to normal size, in the next scene her feet grew right out of her slippers– and all the kids in the theater gasped “Oh no!” with big grins on their faces.

Because the fact is that we’ll never know all the answers, it’ll always be a puzzle, and we’re gonna have to keep trying anyway.  So for now I’m going back to just being the mom.

angry words and the mountain.

angry words and sharp comments
confusion, escalation, debate
misunderstanding stings
I feel shaken,
whipped around by the tones in your voice
 
heart racing and leaping
grasping at words as they fall away
down the sides of the mountain
that sprung up between us
it’s all wrong, my words twisted & thrown
… not what I meant, not what I mean…
 
frantic I try to put thoughts back together
and find my way back to the core
 
voices quieter now.
tears and a nod
a hug but it’s hollow
and panic is lingering
lonely and lonelier still…
there’s nothing to do but let the tears come
and stare out the window
watching the sky
 
… please help me come back …
…are you there? … are you gone?
 
it’s crushing, fast breaths
grief floods the insides
words scroll through my mind,
and I realize …
I’m talking out loud to myself
 
I try & I cry & I’m hopeless at this
fumbling, throwing out thoughts
nothing helps …
but I pound my fists on this mountain
as I cry & I try
desperate to find you again
 
the words lay in heaps on the ground where I sit
and the mountain looms large in the fore
I miss you, I’m broken
but finally listening…
I can find my way back to you now
 
I return with hands open, with words set aside
to hear your heart beat and your breath
my fingers tangle your hair, I let go and I soften
to feel the end of the journey apart
 
my back to the mountain
I breathe slowly once more
and give thanks that the climb didn’t break us
we found our way through, can we always do that?
I am grateful to simply be here.

:~) Quote for the Moment (~:

autismhomerescue11241101“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face… do the thing you think you cannot do.”

~Eleanor Roosevelt

For women in challenging circumstances ~
It’s okay to begin again ~
 
 

Please feel free to message me, too!

 double koru
 
 

for all mothers in less-than-ideal relationship situations

Some days I just feel compelled to throw out an entry in what I call my “required reading” category.  Today’s topic:

D.O.M.E.S.T.I.C   V.I.O.L.E.N.C.E

Big, bad, ugly words.  We like to think that those words don’t apply to us or to people we love because big, bad, ugly things happen in other families, right?  It feels better to believe– on this side of things– that we are somehow protected from crazy or impossible situations that we see happen to other people out there in the world.  If we thought “that could happen to us” every time we watched the news, then we’d be too fearful and anxious to survive daily life.  Makes sense to me.

Still, there are many, many people around us who are in difficult, destructive or dangerous situations.  Some are aware of their circumstances, their resources and their options.  But many are not. 

Because I am a woman and a mother, I’ve decided to address this post specifically to other women like me.  But domestic violence can happen to anyone, male or female, single or married, gay or straight.  Please be aware that although I’m writing woman-to-woman here in the interest of simple readability, whatever situation you– or your loved ones– may find yourself in, there are resources for you too. 

Here’s the truth about domestic violence in the United States: 

One in four women in the U.S. will experience domestic violence in their lifetimes.  It takes the average woman 7 times to leave an abusive situation.  Domestic violence affects women from all walks of life, all education levels, all socioeconomic backgrounds, all races, religions and sexual orientations.  It affects parents of typical kids and parents of kids with special needs. 

See:  The National Coalition on Domestic Violence (NCADV) fact sheet here.

Domestic violence is not just physical.  When one person exerts control over another, when someone is  threatened or harrassed or isolated from friends, when one person in a relationship controls all the money in the bank account, for example, or won’t let the other person leave the house when they want to, that’s domestic violence too.  Just because nobody physically harmed you, doesn’t mean harm hasn’t been done.

See:  Information from NCADV on psychological abuse here.

 

********************

Over the years, both personally and professionally, I have encountered many helpful mantras for coping with less-than-ideal relationship situations.  I share some of them with you here in the hopes that if you find yourself needing encouragement or wanting to help a loved one, something may resonate with you and encourage positive outcomes.
 
  • In healthy relationships, people don’t get punished for being who they are.
  • Just because someone yells and screams or makes statements in a loud, authoritative voice, it doesn’t mean they are right or that they are telling the truth.
  • Just because someone says, “This is the way it is!” does not mean it has to be that way.
  • When someone is being mean or abusive and telling you it is your fault they are angry, it is not your fault.  No matter what you do, you cannot control their behavior or reactions.  Even if you do “everything right” they may still be angry because their anger has to do with *them* not with *you*
  • Children are smart.  They know who really loves them, who has it together and who doesn’t.  No matter what someone else tells them about you, if you take a deep breath and focus on being the best parent you can be (and not feeding into the negativity coming from an abusive person), your kids will know what’s true.
 
********************

If you suspect a child or teenager is being abused or mistreated, call 1-800-4-A-CHILD or go to the Child Help website.

To find domestic violence resources (including shelters if you are in danger or support groups if you are concerned) in your state, click here or visit the Feminist Majority Foundation.

If you are seeking LGBT resources for domestic violence, click here for the Rainbow DV page devoted to information, links and support groups.

Local hospitals or women’s centers often have free counseling and/or support groups for women who have been victims of domestic violence.

Other helpful websites:

Eve Foundation: Ending Violence Everywhere

National Coalition Against Domestic Violence

 1-800-799-SAFE (7233) will connect you to safety resources in your area.

If you or someone you love is in a less-than-ideal relationship situation, there is hope for things to get better.  Please reach out for help, you are not alone.

Portia%20Nelson

My Brother Is ‘The Biter’: On Smashing Guitars, Owning Hard Truths, and Coming Through with Love

Today, I’m pleased to share Autism Home Rescue’s first-ever guest post from Caroline McGraw!  Caroline is a would-be childhood paleontologist who digs for treasure in people.  Her younger brother, Willie, has autism, and she writes about finding meaning in the most challenging relationships at A Wish Come Clear.

~*~*~*~

It takes a great deal of courage to say, as Cathy did, “My child is the biter.” 

It’s hard when your brother is the biter (and the bruiser, the head-banger, the one who punches holes through walls).  It’s hard when you’re living next door to him, and you don’t feel safe enough to fall asleep at night. 

But harder still is the feeling of disconnection, the fear that the person you once knew is gone forever.  That, more than the cuts and bruises, triggers anger.  Anger that wells up inside you and threatens to explode.  If you’re like me, you never thought you could feel such anger

And you never thought you’d feel such paradoxical desires; one moment, you’re wishing that this violent person would disappear, and then next, you’re thinking that you’d do whatever it takes if only it would offer that person some comfort, some respite from their self-injurious and other-injurious behavior.  You want to give up hope … and you want to believe that love can overcome all obstacles. 

In my first book, Your Creed of Care:  How To Dig For Treasure In People (Without Getting Buried Alive), I share a story that encapsulates that paradox:

“Once upon a time, when I was a teenager, I got so angry with my brother Willie (and his erratic, sometimes- violent behavior) that I smashed an antique guitar to smithereens.  (If it helps, it was an old, ratty guitar, not a collector’s item.)  This guitar had been given to my brother by my grandparents.  After a particularly difficult evening at home, I walked upstairs, saw the guitar and simply started smashing it against Willie’s wooden bed- frame.  I was so, so angry.  I so, so badly wanted him to stop acting crazy.  I wanted him to change back into the brother I knew. 

After, I felt bewildered, astonished…and relieved.  While the wood was splintering and the strings were snapping, I’d realized … I could not change him.  I could not change my parent’s decisions.  I was powerless to change any of those things, but I’d done something that I needed to do.  I’d released some anger that I needed to release. 

I’d stopped fixating on what I wanted to change about him and started letting myself feel what I felt. 

Ironically, this was the first moment in ages at which I could feel empathy for my brother, who had so much rage inside of him.  It was small, but it was a beginning.  Amidst the shards of a broken guitar, I took my first step on the road to loving my brother as he was, not as I wished he would be. ” 

I’ve walked much farther on my journey since then; I’ve built a stronger relationship with my brother and with many other remarkable, differently-abled adults.  And in the process, I’ve come to see that the beautiful thing about acknowledging hard truths is that the telling can set you free.  When you say, “My child is the biter,” or, “My brother is the violent teenager who got kicked out of school, the one who makes me so mad I actually smashed a musical instrument to pieces,” you’re acknowledging the difficulty and struggle and pain, but you’re still putting your relationship first.  Even in your darkest hour, you’re still saying, “My child,” and “My brother.” 

Whether you’ve thought consciously about it or not, you’re communicating that the person you care for is more than their behavior, more than their current difficulties.  You’re saying that your love for that person is bigger than whatever challenge you’re facing together. 

Some days, it hurts to believe it.  And other days, it feels like the only thing worth holding on to.  Regardless of what kind of day today is for you, know that you are not alone, and that your care of one person has more power than you can ever know.

~*~*~*~

To read the rest of Your Creed of Care: How To Dig For Treasure In People (Without Getting Buried Alive), visit Caroline at A Wish Come Clear; the 60+ page guide for caregivers is free to all who elect to receive posts via email.

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