Thank you for all your prayers!

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I am so grateful for all the blessings we have in our lives! Our family has been loved and supported in the most amazing way over the past few months since the craziness started with Alex’s placement and talks of moving him. I am so grateful for all of your prayers and good thoughts!

The update is that in just about every aspect Alex is doing better. The high intensity aggression has come down, medications have been adjusted to the point where we think we’ve got the right amounts to help just where he needs it, and he is overall a happier, healthier kid. Alex’s direct staff seem pleased in general.

But on Friday, one of the administrators called me to “touch base” about my trip to New Hampshire to see a possible placement (a trip I’m leaving for now). He said plans are still moving forward to make Alex leave his current placement– the only place that has made serious progress towards helping him get home to us. When I asked why that was still the case given all the positive progress we’ve seen (which has eliminated doubts of their being able to treat him) I was told they’ve got a “quit while you’re ahead” type policy (my words, not his).

So I need your prayers again. Please pray that all of the people involved with my beautiful boy will see clearly the importance of keeping him near his family, and will advocate in every way possible to make that happen. Pray that I will know the right questions to ask in NH to get the information I need to advocate for Alex. And please pray that God will open the hearts and minds of any naysayers so that they can clearly see there is a win-win-win solution out there and we can find it.

This is not about a mother’s sadness at the prospect of missing her son. It is about the deep knowledge I have of what makes Alex tick and what will truly help him. I refuse to allow him to be punished by taking away the one thing that is most meaningful and rewarding to him– family contact.

Thank you for being here to listen.

xo

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

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.

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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….

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… 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.

A Lemon for my Water

autism home rescue 07131201Sometimes it’s the simplest things that make the most difference.  I’ve been trying to drink more water and the thought occurred to me our filtered office water might taste fresher with some lemon juice.  So I walked past my favorite coffee shop on the way back to my desk and asked for a lemon.  My girl Kristin over there, who’s always quick with a joke and a sly teasing comment about how high maintenance I can be, handed over a perfectly wrapped little lemon slice and said, “Hey that’s wrapped gold right there!” with a wink.  It was perfect.

To know and be known.  I think that’s what everyone really wants in life.  For people around to notice you, to consider you with kindness, to genuinely care.  I’m aware that I can be high maintenance and very particular when it comes to important issues, but really the things that make me most happy are so little.  A slice of lemon is truly gold to me today.

I’ve been thinking a lot about why it means so much to me to be known lately.  Perhaps it has to do with the space my mother’s death left in my life.  She certainly knew me better than just about anyone else, yet I often felt a tug-of-war for her attention.  She was busy and involved, running around experiencing life, traveling, doing good out there in the big world.  Sometimes I felt I had to jump up and down to get her to slow down and take notice of me.  And when she did, it meant everything.  Like the time she scolded me about parking in the neighbor’s space and I threw a little fit and left to run an errand.  When I came back, I was still tense and cranky, but trying to let the feeling go.  Mom hugged me immediately—she didn’t even wait until I put the groceries down—and said, “I know the parking space isn’t most important, the most important thing is we are here together.”  My crankiness melted away.  She knew me.

In everyday life, maybe it’s not just about feeling known, but also about my own perceptions of the quirky little things that come naturally to me.  If I see someone wearing earrings I like, I’ll comment on them and tell her so.  If I have questions about a product or service, I’ll ask.  If someone offers to help and I need it, I’ll try to let them know what would be most helpful in that moment—because I take for granted the fact that people are basically good and most folks aren’t apathetic, they actually want to know how to get involved.  I certainly don’t think I’m alone in what I notice or what I need and want, but I may be in the minority when it comes to the ability to open my mouth and comment, ask, or talk about elephants in the room.

Another one of my coffee shop friends, Amanda, made me an amazing cup of Hawaiian Coconut coffee this morning with just the right amount of soymilk and Splenda, exactly how I like.  I thanked her and commented on how good it feels to be known to someone else.  As she carefully pressed a white coffee cup lid onto my favorite ceramic mug from home, she replied that all her life she has wanted to be a “regular” at a local coffee shop and be able to walk in and have someone know just what to serve her.

And you know what?  For the rest of the day, I’ll be thinking about that and wondering what small part I might be able to play in giving her that feeling for just a minute.  Because sometimes that little “slice of gold” just means everything.

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A prayer for the new people in our old house

The last two months have been a tidal wave of housecleaning.  Literally.  On April 27th, the first house I ever owned, 3300 square feet which my ex-husband and I chose 13 years ago as the place we would raise a family, the home where both of my children were born, became the property of another family.  Then on May 11th, my mother’s house was sold, leaving another empty space in what I had always envisioned of my life plan.  These two transitions felt like major losses and big changes on one hand.  But on the other hand, they each brought unexpected moments of peace and triumph.

Our family home went not just to a mom and dad and two little kids, but also to a church family.   A nearby Presbyterian congregation purchased it to use as a parsonage.  This fact brought such calm to my heart because it was an assurance that there would finally be a whole village of people– an entire community– to repair all that had been broken.  A new group had come to fix up a place I had loved but hadn’t been able to care for.  The broken windows, the cracked stair spindles, the doors off hinges (mostly the result of my son’s rages) would be replaced, repainted, remodeled.  For nearly a year, every time I had come back into that house, I felt the pain and loneliness sting.  It was as if the house itself was a child I had once loved but abandoned.  When I looked at bits of peeling wallpaper I had long since given up on smoothing over, part of me remembered gently taping and cleaning and making better little parts of this house the way a mother washes a scraped knee, puts on a bandaid and makes everything better with a kiss.  Even Aubrey felt it the first time she came there with me.  She said she understood why I cried about it and why it was so hard, but that cleaning it out and selling it would be like opening up a wound to wash it out.  At first it would feel really raw, but in time– and soon– the wound would heal and it wouldn’t hurt so much.

For months I tried to sort through the things left in that house.  As much as I tried, I could never bring myself to organize a plan to clean it out completely.  I just couldn’t face the ghosts in that home because I had nothing to tell them.  And I didn’t know how to explain my departure and close it up.

The week before settlement, Aubrey and her family helped me move key pieces of furniture to storage.  Then the day before it sold, Dan and I brought a truck to get the rest.  It took hours more than I expected.  Everything was heavier than I had anticipated.  We worked from 9 AM until 11 PM and were not even finished.  Throughout that hard day, I wracked my brain trying to figure out how to get closure, how to transition the house and myself in a way that felt good.  I felt much the same way about getting closure with this home as I had about writing my mother’s eulogy– I had one chance, it was going to be a challenge, but I would never be able to take a do-over on this one.  If I wanted to do it in a way I felt proud about, I had to do it now.

Feeling depleted and out of tears, the morning of settlement very early I went back to take a car load of donations to the thrift shop and say goodbye.  I vacuumed each room for the last time, closing the doors as I went along.  Then I loaded the car and went back inside.  I decided to honor the house by saying a prayer in each room, much the way my mother and her friends had done for a house blessing years before.  But this time I added a new twist.  Stepping through each doorway, I recounted all the things I felt grateful for in that room.  And then I asked the universe for special protections for the new family.  I don’t remember my exact words, but the gist of this prayer of passage is below:

Dear Lord,

Thank you for this space you helped me find & create

Thank you for the fun we had here, for the chance to see my kids learn to walk in this home,

for the meals made in the kitchen, for the holiday celebrations.

Thank you for the doors that welcomed so many people, for the nooks & hiding places my kids explored. 

Thank you for that feeling of calm & shelter when the weather was bad or the night was too long.

Please, Lord, bring the new family joy as deep as that in this house.

And God, please, please no mean words in this house.

Protect the new family from conflicts that have no resolution, keep them safe from harm,

strengthen the walls, the windows & the doors so that they may not break or slam.

When they feel sad, bring them comfort.

When they feel angry, let this home become a soothing place that calms them.

Make this house a place where love & respect & peace & tranquility can live.

And no matter what, through everything that may happen in their lives,

please help them to know

they will always be protected and loved.

I cried through it all, I repeated myself and stumbled over almost every word.  I must have sounded like a blubbering idiot, talking to the house as if it were alive, reassuring it that this change was good and things would get better.  Even from a clinical perspective, I still haven’t figured out what all of that was really about, or how it helped.  But it did.  When I left, I walked out the door for the last time feeling like I had accomplished the task I set my mind to.  I left flowers in a pot on the foyer table, with a note for the new owners which read:

“We tried our best to clean everything, but we know we missed some things (hence the clean out service).  The last few years were rough for our family, and many things kinda fell apart on us– including this house.  But before that hard time, this home was a place full of laughter & joy.  We hosted family celebrations, huge Christmas tree trimming parties and ‘drive-in’ movies in the back yard, and the house was always filled with people.  We hope that you find as much joy here as we once did.”

I felt tired and run-over as I followed Dan back to the truck rental place, thinking about the overwhelming number of boxes I had just added to my new garage.  As we drove back to our neighborhood, Dan remembered the letters from Alex’s bedroom door.  I dropped him off and went back to get them.

When I knocked on the door– on my own front door which wasn’t mine anymore– another mom who looked as familiar as family opened it and invited me in.  She was kind and soft-spoken.  Her son (age 4) and daughter (age 2) played around her as we talked, giggling and running around in circles from the foyer to the breakfast room to the kitchen over and over like my kids used to do.  She told me my note really touched her.  She invited me to talk about the house.  And she listened.  When I couldn’t hold back my emotions and the tears welled up, I told her about my prayer and she offered a hug, which I accepted.  Finally, I realized the closure.  It hadn’t come through an ending, but rather through a new beginning– which in this house was hers, not mine.  The new mother in my old house allowed me to share in her beginning, helping me sense the security I needed for a transition much too big for words or rituals.  And the second time I said goodbye to that house, holding A-L-E-X in my hands, I finally felt the healing begin.

:~) 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
 
 

:~) Quote for the Moment (~:

autismhomerescue11241101

In any given moment, the universe is primed to give us new life, to begin again, to create new opportunities, to miraculously heal situations, to change all darkness to light & fear to love.      ~Marianne Williamson

Sharing a few autism journey miracles

… 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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