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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“Honey, come quick before you miss this…

… it’s time for that show at the house next door!”

(Maude grabs popcorn, pulls up a chair for her spouse Donald to sit with her at the window, and settles down for the latest exciting installment of “Autism Home Rescue:  At Home.”)

The WordPress topic today, in case you haven’t already guessed, is:  Write a story about yourself, told from your neighbor’s perspective.  Oh boy, this should be a fun one.  I’m not sure I wanna know what our crazy household actually looks like in reality to our neighbors (whom we’ll call “Maude and Donald” for confidentiality purposes.)  So for your reading amusement today, I’m just gonna make this one up.  Ever see the movie “The Burbs” with Tom Hanks?  Well, picture kinda like that.  But, um, we’re not axe murderers or anything.

Maude:  “Come quick, I don’t wanna miss the beginning like we did last week.  I was all confused when the mail truck showed up twice in one day and Hannah climbed out the back.”

Donald:  “All right, all right, I’m hurrying.  Did the au pair arrive yet?”

Maude:  “No dear, the au pair left screaming, remember?  There are three new babysitters now.  Or maybe four.  Wait– someone is coming up the walk.”

lara_croft_001Maude & Donald wait and watch as Dacia parks her car in front of the house in Superhero Parking Space #1 at exactly 3:00 pm and glides up to the family home.  Dacia is gorgeous, confident and ultra-prepared.  A behavior specialist and autism-expert-extraordinaire with long brunette locks and a smile that could charm the most hardened criminal, she was brought in after the infamous “window-breaking episode” to kinda clean things up.  Picture Lara Croft only happier, minus the guns and the sarcasm.

Dacia unlocks the door just as Alex’s bus is pulling up.  The bus door opens and

**freeze frame & rotate to the side to see Alex in all his hyperactive, OCD glory in mid-leap flying off the school bus onto the walkway**

Dacia:  “Hey bud!

Alex:  (singing loudly)  “Daaaaashhhaa!” (as he runs past her into the house)

The door closes.  Alex announces “RADIO!” and in about 30 seconds loud gospel music begins pouring through the walls.  (Last week it was country music, the week before jazz and rock.)

Will-Smith-Men-In-Black-383341In the meantime, a black SUV zips expertly into Superhero Parking Space #2.  Cue spy movie background music & slow motion effect as TSS Jack (Wraparound Support Services Guy) exits his vehicle & whips off his sunglasses.  In a flash, he arms himself with all the tools needed for whatever he may encounter inside the Home.  Positive reinforcers in hand, Jack strides confidently to the door.

Alex opens the door:  “Jaaaaaack!!”  (at the top of his lungs)

The door closes again.

Donald:  Those two, they’re like the dream team.

Maude:  I know, right?  Last summer after that cliff hanger episode when the chair flew through the door I was kinda worried.  About time they brought in some extra reinforcements–  hey, who is that?

charlie_s_angels_ii_-_full_throttle,_2003,_drew_barrymore,_cameron_diaz,_lucy_liuAshley arrives and parks in Superhero Parking Space #3.  She’s the newest addition to the Team, beautiful & smart with a calm but fun outlook on life.  Picture Cameron Diaz in “Charlie’s Angels.”

Donald:  That’s the new one, right?  Think she just finished her Agent training at the University Campus downtown.

Ashley enters the house.  Even over the blaring music, Alex can be heard screaming “Ashweeeeeeee!”  Through the windows Alex can be seen zipping back and forth, moving lights and building supplies from room to room.  Before long, construction has begun on the largest Rube Goldberg contraption known to man.  Ping pong balls and marbles bounce around on ramps and spirals, flying from room to room, upstairs and down.  The three superheros move with Alex through the house with the precision of a team of ninjas as Alex screams gleefully “Marble run 3000!  The best marble run ever!  Donnnnn’t touch!!”

Mystery%20machine%20cartoon%20versionThe clock ticks 3:30.  A beaten up little 3/4 minivan swerves into the driveway on two wheels.  Mom hops out and runs up the walk, 27 bags in hand and 15 minutes late as usual.  Alex’s teachers from school, whom we’ll call Kate and Rachel, meet Mom at the door.  Kate and Rachel could be the 2nd and 3rd Angels to Alex’s “Charlie.”

Donald:  I don’t know how they do it, but whoever casts this show has some talent.  Did you ever notice how they all look like movie stars?  That little boy just surrounds himself with gorgeous women.

Maude:  (dreamily)  Mm hmm.. (mutters under her breath)  I kinda like Jack

Mom, Kate and Rachel enter the house.  As the door opens, more screamed greetings followed by Alex announcing “QuesadiwAAH!”

3232_Mexican_PuebloMaude:  Everytime this commercial comes on, I just feel like dancing.  (Maude & Donald chuckle as a lively Mexican theme plays and Alex ticks off the recipe)

*insert scrolling recipe subtitles here*

Alex:  Torteewas, chicken, cheese.  Lettuce shreds.  Salsa.  Beans.  …  Beans??  Dacia, get some refried beans please!  Go to store, get beans, okay?

Dacia:  Okay, bud.  Let’s write the list for Mom.

Alex and Dacia construct the shopping list, which now includes 3 more desk lamps, an 8-pack of lightbulbs, every item in the Mexican food specialty aisle at the grocery store, the “magic toy” (apparently a “classified” gizmo of which no one on the entire team has any knowledge) and gluten free cookie mix.

blue laser beamMeanwhile, Mom, Kate & Rachel conduct a Top Secret meeting in the next room where they are developing plans for the most Amazing Home Program known to man.  Papers shuffle, complex charts and graphs are passed around the table, heads nod.  A nifty 3-D blue laserbeam display hovers above the table for a minute, then disappears.

Kate:  And that.   Is how Alex will load the dishwasher after dinner.

Mom & Rachel high five as big smiles all around radiate an immensely glowing light out through the living room window.

cute_tiara_fairy_princess_poster-p228420657750043199t51d_400The door opens again.  Alex and his Team exit and make their way to the bus stop, then return a few minutes later with Hannah, who wears a diamond tiara and brightly colored princess gown over her school clothes.  They are joined by another Behavior Specialist who looks extremely serious and professional, kinda like an FBI agent.  Hannah carries the 17 new stuffed animals she has accumulated throughout the school day.  She updates Dacia on all the animal stats.

Hannah:  This one is Spot, he’s a dog.  And this one is Sneaky.  Here’s Snow White, Marshmallow, Gigi & Fifi.  Fifi is an ox, but her mommy is a Moose.  They got left in the toy bin, but Fifi climbed to the top– she’s a survivor– ohmigosh, she was so sad because her mom was still at the toy store until I rescued her and took her away from the pig.  Oh– and this one is Grand Central Spacement.  She’s a golden retriever….

Salsa_DanceMom opens the door and The Home Team disappears inside the house.  Lights begin to flash off and on, in a kinda bizarre morse code.  Alex sings, “Ready or not, here I come!” as another voice calls out, “Dinnertime!”  The theme song of “The Incredibles” begins to blend in with the radio, which is now blaring salsa music.  Mom, wearing her own sparkly tiara, can be seen dancing around the living room with Hannah.

A TV announcer’s voice echoes above the neighborhood:

“Will the home team unlock the secret of the ‘magic toy?’  Are there really enough quesadilla fixings to last the week?  Will Grand Central Spacement ever find her mommy dog in the bottom of the toy box?  Tune in next week as we hear Alex say, ‘Mommmm… I love you!’

Maude picks up the empty popcorn bowl and closes the mini-blinds.  She smiles at her husband.  

“Whoever would have dreamed we’d find such entertainment right in our own backyard?”

 

Today’s Gratitude List

DChitwoodGratitude

Today I am grateful for:

  • Snow.  Let me clarify this since I live on the East coast of the U.S.  I am grateful for new snow that falls in big pretty flakes at night & sparkles in the moonlight when I am home in my pajamas and don’t have to drive anywhere.  I am grateful for snow shovelers– like the amazing kid whom I met two days ago (see the next item on my list)– who become part of my village when they knock on the door and offer to take care of our home’s big corner sidewalks.  And I am grateful for all the snow-plowers, road-salters & transportation… um… “specialists” let’s call them, who help us get “back to the schedule.”
  • I am grateful for Adam, who helped to clear out the driveway & shared a cup of hot cocoa.  Adam, a neighborhood kid, knocked on the door & introduced himself.  We negotiated a price, he went to work.  The next day he was back to help again.  He mentioned he also babysits.  When I asked “Do you know anything about autism?” he replied, “I’ve got two disabilities myself” and went on to share some of his story.  Turns out his mom is one of my favorite special needs advocates, a woman with an amazing outlook on life who has encouraged me through some of my toughest challenges.  The world became smaller– and much more “walkable” — yesterday because of that encounter.  Thank you Adam!
  • I am grateful for the bit of flexibility my son is able to muster on days when his entire schedule is thrown off by closed schools, rearranged routines & upside-down family situations.
  • And last but not least, I am grateful for my new favorite piece of jewelry:  A homemade paperclip necklace that Hannah presented to me two days ago.  I bet if I made a whole line of these things, I could fund her college education.  But for now, I’m the proud owner of the one and only piece in this original “Paperclip Jewelry” collection.

paperclip necklace

What are you grateful for today?  Write it down & share it!

Community, communication & unspoken understandings…

(a post about “the village,” the power of words, and shared celebrations…)

kids halloween 2010Last Sunday we went trick-or-treating in our neighborhood.  Alex was a Jedi Knight, the perfect costume for a handsome boy obsessed with lights– what other character can flash a charming smile underneath a mysterious hooded robe AND carry a nifty bright blue light saber at the same time?  Hannah was Cinderella.  I earned big points when I figured out how to roll her very fine mass of long blonde hair into the perfect princess bun on top of her head and pin it so it stayed put.  Then when I sprinkled some “magic princess dust” (read: cheapo body glitter from the mall) on her hair and dress, she actually gasped!  Score one for the mommy!

The kids rushed through dinner, I put on my favorite pair of cat ears, and away we went.  Our neighborhood has one street that is trick-or-treat central.  It is always crowded with families and each house is uniquely lit up and decorated.  It feels to me almost like a Norman Rockwell-esque Halloween painting:  expertly carved pumpkins, smiling grandmas with baskets of candy, entire families in costume, tree-lined sidewalks with crunchy leaves.  Owls even hoot in unison and someone is inevitably playing some kind of spooky, yet not-too-scary Halloween music.  I’m serious, no exaggeration.

The kids pretty much know the drill, so we don’t have to do a huge amount of coaching anymore.  Only tricky parts are keeping Alex’s enthusiasm and energy in check (remember he’s a runner and he’s fast!), reminding him about Halloween etiquette (like no going all the way into someone’s house) and trying to quell his new anxiety about dogs.  This last one has become quite a challenge.  At the sight of a dog, Alex will take a running leap and attach himself to me, heart beating like a rabbit, eyes darting every which way, occasionally squirming higher to make sure his feet aren’t in danger of being nipped.  (Although Alex is genuinely scared, I gotta admit the whole scene is kind of comical to onlookers since I’m not much taller and bigger than Alex is now!)  So the long and short of this is that if Alex suspects that a home *may* contain a dog- any dog, big or small- he will actually hold the door to the house shut.  Kind of a problem when there’s a line of kids waiting for candy with the poor homeowner barricaded inside!  Ugh.

We made our usual rounds.  Things were going well.  Halfway down the street, after stops on several porches, I noticed people at their doors saying things as we approached like:

“Don’t worry, Alex, there’s no dog” and

“Come here, Alex, I have some candy for you” and

“This way, Alex, that’s right, good job!” 

At first I thought, “How sweet that so many of our neighbors know and remember my son. What a nice place to live!”  Then it occurred to me that most of these folks actually didn’t know Alex.  But they had heard me say the same things over and over at each previous home—sometimes a bit louder than was intended, apparently—and they were simply taking cues from me as to how to make Halloween work for Alex.  That in itself does make my neighborhood a nice place to live, but in a slightly different way.

As I realized what was going on, I smiled to myself, turned to the mother next to me and said, “Apparently everyone knows Alex!” with a chuckle.  She smiled.  Then I said, “We live in Holland, but we still visit Italy on occasion.”  She laughed and nodded yes.  She understood.  I noted the small-world-miracle in that, nodded back and ran to catch up with the kids again, calling:

“Alex, honey, let go of the door, there’s no dog in that one….”

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