Love works every. time.

alex and me

Wanna know the power you have in the universe?

Wondering if a village can move a mountain?

Unsure about whether every prayer and intention is truly heard and answered?

Read on and wonder no more:
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
ALEX IS STAYING AT HIS CURRENT RESIDENTIAL PLACEMENT!!
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
We did it! 
All the love and support, prayers and good vibes you all have poured into the world over the last few months have worked.
Mountains have moved, obstacles have vanished. 
The decision-makers and clincians involved have been inspired to find better, more creative solutions than moving Alex, because keeping him near his family is simply the right thing to do.
I am so grateful to you and to everyone at Alex’s placement.  
Thank you, thank you, thank you for believing in my boy and giving him the chance to create his success story in the environment that can make it happen!
WOOHOO!
God is GOOD!!!

 

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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

In 2013, I want to make this place your home…

The song in my head on this New Year’s Day:

I know this song was not written about autism or me and my son.  But when I listen to it, it touches my mama heart in a unique way.  I hear the words and I envision a home where Alex can live happy, healthy and safe with the people who love him most.  I remember how our family worked hard to make the world okay for Alex, to enable him to enjoy everyday experiences, to show him new things.  I think of the anxieties and sensory issues that are so challenging for Alex and so many kids on the autism spectrum.

autism home rescue 1115201202Thank you, Phil Phillips, for writing a song that inspires this mother to think once again about creating a real, functional home for my son. 

For inspiring me to believe it’s possible for Alex to come home to us, and for helping me to see the detailed pictures of that transition in my head. 

I am grateful for your poetry and your beautiful music.

~*~*~*~*~*~*~*~*~*~*~

“Hold on, to me as we go,
As we roll down this unfamiliar road.
And although this wave is stringing us along
Just know you’re not alone,
Cause I’m going to make this place your home.
Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.

Just know you’re not alone,
Cause I’m going to make this place your home.

Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.

Just know you’re not alone,
Cause I’m going to make this place your home.”

~ Phil Phillips

four of us 2

“God bless our whole life together”

 alex avatar2

Today I am grateful for:

  • Hope.  Plain and simple.  Sometimes I don’t realize that I’ve lost touch with hope.  I have all these quotes taped to my computer (“All is well, out of this experience only good will come” and “Optimism is the faith that leads to achievement” and “Leap and the net will appear” etc.) and sometimes I think I do have optimism and faith and I am trusting and leaping freely.  But then I realize somewhere along the line hope has actually slipped to the back of my mind, that I’m not as free as I had thought, there’s something heavy in the background sitting on a small but growing patch of anxieties.  When hope appears again, the relief I feel is like a cool breeze from the ocean on a hot beach day– I don’t realize how I had missed it or how sheerly *good* it feels until it comes again and reminds me.  This week I saw the movie Wretches & Jabberers for the first time.  It brought that feeling of hope back to me.  Not because of the story or the specifics, but because as I watched this film another window opened in my mind.  My proverbial “house” where God closes doors and opens windows became bigger and through the new open window created by these filmmakers came a gentle ocean breeze which awakened hope again in me.
  • Rainbows & nail polish.  I painted my toenails last night, each toe a different color like a rainbow, because Aubrey & I will be attending the Pride festivities in San Francisco.  Why something so mundane on a gratitude list?  Because I like pretty toes, because I can afford five different bottles of colors (cheap colors, but colors nonetheless!), because I like sandal weather.  And most importantly, because I live and work in a place where I can be open about who I am and I can show it on my toes.  How grateful I am for openness and acceptance!
  • Bedtime prayers & Alex’s words.  “Wretches & Jabberers” had a profound effect on the way I see the whole autism world.  One of the two main characters in that film, when asked what people with autism are like, responds:  “More like you than not.”  I know that.  Of course I know that.  But deep down that line stirred something in me.  It brought all the advocating, writing, fighting, learning, stretching, wanting, waiting, worrying, trying & planning & crying & wishing I do for Alex back to the realm of typical mother.  I do all that because I am mom, not because the autism needs to be solved.  The communication gaps need to be bridged, the awareness needs to rise.  But my beautiful boy is still– definitively– more like me than not.  Looking through this new, hope-full window last night, I cuddled up with Alex for bedtime prayers.  We said our usual stuff, we said thank you, we asked God to keep the people we love happy & healthy & safe.  I told Alex I am proud of him & I know how smart he is, that I’ve known it all his life, I have always believed in him and always will.  Then I asked if he had anything else to add to prayers.  He paused a minute, looked at me thoughtfully and said:

“God bless our whole life together.”

Amen.

autism home rescue 0620201201

graduated.

Graduated?  Hmmm…

A staff member and teacher at Alex’s residential facility told me on Tuesday that I had “graduated.”  I was walking with Alex up the big hill toward the gym after spending his lunch hour with him.  It was Valentine’s Day and I absolutely *needed* to be close to the only boy who will ever completely own my heart.  Alex is my love, and if he could express it in words I think he’d say:

“My mom is my best girl.” 

But of course, the spoken words usually elude him.  And he’s 11 now, not exactly the age for publicly confessing to parental attachment of any kind.

On our walk I was feeling calm, enjoying the unseasonably warm & shiny day, grateful for the feeling of Alex’s hand in mine, grateful that he was walking *with* me and not running ahead.  Grateful that we were both present.  Anxiety levels were low, warm & fuzzies were high.

I didn’t respond the first time his teacher said “you graduated” so she repeated it a few minutes later. 

She continued, “You graduated.  You’re not melting down anymore.” 

I laughed.  I’d certainly melted down on this poor lady on more than one occasion.  Each time she listened patiently, she reassured me I wasn’t crazy, she encouraged me, and promised it would get better with Alex here, that I’d learn and grow through this process and things would become alright.

“It’ll never be okay.  But it’s going to be alright.”

Choice words given to me by another autism mom with a kid like mine at the same place.  That was two months ago now, but those words still wind through my head once in a while, like one of those scrolling banners outside a shopping center. 

“Graduated.”

alex on the swingsWhen will that really be, I wonder?  Another word that scrolls by on the bottom of the movie screen in my mind, as I replay my Valentine’s Day walk and the special moments of that day with Alex.  I wonder if I’ll ever feel closure, if I’ll ever feel “graduated.”  If it feels “alright,” if I’ve passed the point of the initial meltdowns, does that mean I’m somehow farther along in the natural process of “autism mom?”  Or is this just how it will always be, intense experience with a continuous, ever-scrolling banner updating & explaining & punctuating my experience?

Sometimes this autism life really doesn’t make sense to me.  Or the words elude me, too.  But I keep thinking to myself that as long as I can be present, no matter how long the journey or how much work until the next “graduation,” maybe it will indeed become “alright.”

… my thousand words for today …

… because that’s what this picture is worth:

alex on playground

This is Alex looking out over his new playground, content with his current circumstances, asserting his independence, looking more confident and comfortable.  This picture is my autism inspiration piece for today.  Although Alex still asks to come home, the residential staff and teachers report he enjoys living with his new friends.  I am grateful for that.

Residential treatment, introductory post…

Well, here we are folks.  December has been an eventful month.  When Alex was diagnosed with autism several years ago, I discovered a whole new world that was bigger than the “typical” world where I had expected our family would live.  A few years into “autism life,” when I would meet with moms of newly diagnosed kiddos, I often used this analogy while chatting together in my kitchen over a cup of tea:

  • A baby is born and there are all these expectations we have.  It’s like everyone is crowded into the kitchen, oohing and ahhing over the new addition, and happily chattering about how wonderful it is to be right here in the kitchen.  No one wants to step outside of the kitchen for some odd reason because they firmly believe *everyone* is living right in here. 
  • But if you think about it, deep down everybody knows there is a whole house surrounding that kitchen.  It’s just that new parents are afraid to step outside of it.  No one really does it on their own, until someone else pushes them out the door into the dining room.  And once that happens, once we get pushed through the door, we discover a whole house– essentially a whole new world– outside that comfortable kitchen.
  • And it feels better to have these other rooms to live in.  It’s more comfortable than being crowded into the kitchen with everyone else.  But there’s no way to explain that to someone who’s still living in the kitchen because they feel warm & comfortable & safe in there.  Someday something will happen in their lives to make them leave that comfortable place and explore their own house, their particular life circumstances.  And then they too will discover the whole world outside the kitchen of which they are already a part.

My new friends, and the people who looked to me for advice since I was just a bit farther along on my autism journey than they were, often told me they found that analogy comforting.  Well, guess what folks?  I’ve got something new to report:

  • Not only are most people not living in the kitchen, not only is there a whole comfortable house we families with special needs kids have to inhabit– but there are *entire villages* of people, whole communities beyond our homes and what is most familiar!

For the last few years, my family has lived essentially in crisis of one sort or another.  We always managed to find the next service, the next step, the new teacher, the better intervention.  But at some point, I began to feel sort of lost and my faith wavered.  My son’s autism journey escalated to a crisis point where I couldn’t clearly see the next steps.  And I got scared and felt alone.

On the other side of that, I recently discovered that what I really needed to do to re-frame our current family reality was simply to go back to the kitchen analogy.  I had stepped outside that comfortable room years ago, but this month I walked out of the whole big house.  And what I found was a village community safer, kinder and more loving than I could have imagined. 

I share my experience with you here in the hopes that if you or someone you love ever needs to leave all that is familiar behind and take a similar leap of faith, you will find comfort knowing others have relocated, re-established themselves & their families, and have found hope in unexpected circumstances.

Residential Treatment: 

Day 1:  I drive to the clinic to meet Alex’s Dad and transport Alex to his new living place.  I feel tears well up as my car automatically navigates to the hospital I’ve visited nearly every day for 6 weeks.  I think:

“I hope the next place is good.” 

I wonder if we’ve made the right decision.  Logically, I know it is the best course of action.  I try to keep my emotions in check, but as I pull into the hospital parking lot, I start to sob.  I park, grab my phone, and begin calling my “autism network” one by one.  No one answers until I reach my sister-in-law, Adrienne.

“Am I a good mom?”  I ask, my voice shaking.  “I mean, I know I’m a good mother to Hannah, but I don’t know how to do this thing with Alex.  I need to know– really truly– am I a good mom for Alex?  Am I doing the right thing?  This is so hard…”

Without hesitation, Adrienne– who is a supervisor for child protective services two states away and who has seen every family situation imaginable– replies:

  • “You are the best mother for Alex.  You are making the ultimate sacrifice and so is he.  You are giving up control to someone else so that Alex can truly get what he needs.  It’s not something you want to do, it’s the hardest thing a parent can go through– to let go of your child, to let go of the dream of wanting him at home– but this is the best way to get him the things he needs that will help him.  That makes you the best mother.  And stronger than you know.”

I hang up the phone and take a breath.  A voicemail has come in from Elsie, another mom on a similar journey:

  • “Alex has a higher power and this is part of his journey.  You have dignity & grace to be his Mom.  Think of Louise Hay’s message– she wants you to transfer love and healing to him, and that’s what you’re gonna carry:  love and healing.  Just pass that onto him, because that’s what he needs from his Mom right now.  And you have that from the universe because whatever you put out is what you’re gonna get back.  You put out the love, you’re gonna get love back.  And I love you, I’m here for you.  I’m sending you love, healing, warmth, serenity and peace.”

Another breath, I’m as ready as I’ll be.  I meet Alex and Daddy.  We drive in separate cars to the residential treatment facility.  Alex rides with his Dad.  Once at the facility, we’re escorted into a small conference room for the official intake.  As inevitably happens, Alex wants to roam and Dad goes with him to help him explore and acclimate.  I’m left alone with the very sweet social worker, nurse, and various other professionals who drop in to make introductions.

Everyone is nice, they smile and they are patient.  They answer my questions.  They take the piles of paperwork I’ve collected.  They copy insurance cards.  They ask many questions and seem pleased to get the information they need.  I think:

“This is my baby!  I want to tell you everything!  He is my life, my heart is breaking, please, please, please hear everything!”

But I try not to talk too much and to only answer what they ask as concisely as I can.  I try to trust the process, and to not cry.  I fear that if all the intense emotions I’m feeling come flying out, I’ll lessen my credibility somehow and when I really need them to listen, they may not hear what’s important.

Some of the questions are hard:

“If Alex is ever in a situation where he is touched inappropriately, would he tell someone?  Of course, we take every precaution to keep all of the residents safe, but this is important information for us to know in case one of the boys may unintentionally cross a boundary.”

I talk about Alex’s expressive language, what he is capable of telling us and the needs he usually does or doesn’t express.  I tell the nurse Alex does not usually tell us when he is hurt or hungry, but he will answer direct questions.  To the professionals I appear to be coping well.  Inside my head, there is a mother on her knees crying and pleading loudly:

“Please, please, please take care of my baby! 

…my baby, protect my baby boy…” 

Intake finishes.  We go to Alex’s new “home” and see his room.  As we walk in, for the first time I meet kids exactly like him.  Almost like the boys at Alex’s school, but with one difference– all of these energetic, enthusiastic guys are at the same place  for essentially the same reason:  They have needs that could not be met at home. 

Alex’s roommate Anthony is talkative & perceptive like Alex.  Another boy David melts my heart with blue eyes & a big hug.  Still another, Luke, bounces by telling a staff member about his family.  We play with Alex on the playground, we meet the staff members on the unit.  I start to feel okay, I think maybe this situation will become okay …  

Each person I meet really “gets” these kids. 

Day 3:  Aubrey, Hannah and I visit Alex for the first time.  We hang out together in a special family visit room.  Alex is his usual distracted self, I feel a little anxious.  Hannah sees a small bouncy ball I included with Alex’s clothes and toys.  She cries that it is hers and she wants it now!  I try to be calm and understanding, but I am less than patient with her.  I think to myself she has rooms full of toys, Alex is living away from home among strangers, let him have the ball for goodness sake!  But I know why she protests, and how much she has given up over the years.  I explain the importance of sharing some things, and then I keep quiet.  Aubrey helps Hannah feel okay.

Day 5:  I visit Alex on the evening of his birthday.  He is wearing comfy pajamas, his favorite movie “Alvin & the Chipmunks” is playing on the TV in the common room outside his bedroom door.  There is a Christmas tree with colored twinkle lights sparkling.  I am amazed at how calm I feel.  I tell the Treatment Manager who runs the house how reassuring this feeling is.  I am grateful. 

Day 8:  We visit Alex at his classroom and then go with the class to the gym building for their annual Holiday Bazaar.  I learn that the facility is active and involved in the community in many different ways and I realize that working together they are able to provide amazing experiences for the kids there, in ways I had never imagined.  Their work not only benefits the kids, but benefits many families around them who are living in the land of the typical.  My kid is part of a community that educates, empowers & makes a difference.  More gratitude.

Day 9:  We celebrate Alex’s 11th birthday at his new living place with Grandma and Big Pop.  We decorate the play room.  Alex is happy to be hosting a party for his new friends.  The best part for me is being able to share pizza and cake with all of the kids and staff.  I am so grateful Alex is in such a supportive environment.

Day 15:  We attend the annual Holiday Show.  Alex stands on stage, he participates.  My eyes well up as each class sings & performs.  No matter what their challenges, each individual kid’s strengths are highlighted.  I sit with other mothers who share the same scars as mine, who have the same stories, who are walking just a little bit ahead on the autism journey.  They say to me:

“Only two weeks?  You’re doing really well!” 

They offer their phone numbers, they give hugs as freely as their amazing kids whose smiles can capture hearts as easily as my Alex’s grins.  I don’t even know how to tell these parents how much this connection with them means to me.  But I suspect they already know.  I drive home cautiously optimistic and begin to envision a new year….

… to be continued…

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