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Lucky #13

Since it’s Monday, and it’s the 13th post I thought I would give a few more than 500 words. Aside from the fact, I couldn’t cut it off. This was a critical moment in our lives when I saw first hand how the therapy worked.  Please send out to anyone you know.  Getting the story out is still my goal.  Thanks.

*

Staring intently into the tiny video monitor at the kitchen table I have to lean in to see better.  I can only see part of the room, but luckily, that is the part DJ is sitting in. The quality of the video is supremely poor; they look green, literally–I feel like I’m watching a secret mission through night vision goggles.

Ryan is lying on the floor crying hysterically clutching his blanket.  I do not hear him through the monitor; his screams are echoing from upstairs—the audio is poor too, as we didn’t know what level of monitor to purchase.  Dan’s sensibleness said to get the medium quality monitor—“medium” translating to the cheaper one.  It is apparent to me now the price of quality.

Thirty minutes later I am still sitting, watching—for any sign of…I don’t know.  Ryan has cried the whole time.  How exhausting for him, for DJ, and I realize for me too.  My eyes and limbs feel heavy.  Sitting with anticipation for that long with no reward is draining, but I don’t want to move for fear of missing that critical moment—whatever it may be.   I still have many doubts about this therapy.  We approached it with the attitude that ‘if it doesn’t work, we will find something else’.  But I still hold Dr. Hunter’s words close to my heart.

Ryan is still on the floor and DJ sitting in the kiddie chair with a note book in his lap.  He looks so calm to be in the middle of this screaming tornado.  I am about to lose my mind if one more minute goes by with this crying.  I spend so much of my time trying to keep his tantrums at a minimum.  I would literally juggle poodles if it would make him stop crying.  It is always so hard to know what sets him off.  It took me almost three weeks to figure out why he would occasionally cry on our route home.   One day the light was stacked up so I went straight.  He started crying, I craned my neck in the rear view mirror to see what made him cry.  It took a few more episodes of this for me to realize he didn’t like it when I went a different way home.  Routinea classic sign of the disorder.

I so want to go up there and put a stop to the crying. I want to pull him into my lap and cradle him like a baby.   Do not interrupt a session.  It is important you let them establish rapport. Emilee’s words swirl in my already dizzy head.  The poor kid has to be exhausted—I know I am from just watching and listening.

I keep looking at the ominously empty chair across from DJ at the table. It seems like hours have passed by while Ryan screams and I stare at this tiny screen.  My ass and tail bone are beginning to go numb from the hard wood chair and I am developing a major headache from the green screen.  Just wait.

Finally DJ speaks—I hardly hear it above Ryan’ howls.

“Ryan…sit in the chair.”

Yeah, sure, thats going to happen.  You expect him to get off the floor and then sit down? Good luck with that, kid.

After a few seconds, as DJ is patiently waiting, Ryan rolls over, gets up and sits in the chair.  I almost fall out of mine.  How in the hell did he get him to do that? My mouth is actually gaping open as I watch.  Even though, Ryan is still whining, he is sitting in the chair closely clutching his blanket.

“Good job, buddy, nice listening!” DJ screams at Ryan and hands him an M&M candy.  Ryan’s favorite.

I see DJ write something down in the binder as Ryan begins to cry again. Yet, he stays in his chair. DJ places a large yellow block on the table.

“Ryan, pick up the block.”

No response; only louder crying. Ryan doesn’t even look at the lonely yellow block on the table. DJ writes something in the book again.

“Ryan.” He pauses for effect, I think.  “Pick up the block.”

The crying is beginning to subside and I see Ryan look down at the table.  No way. Is he going to pick it up?  DJ waits and I hold my breath.  My face is so close to the monitor, I fear I might fall through like Caroline in the movie “PoltergeistDont go into the light  Focus.

Ryan head darts at DJ then back to the block.  He picks it up and quickly puts it into DJ’s hand.

“Great job! Great job! Take it.” He hands him another candy.  “Take a break, buddy.” DJ is again yelling with excitement.

Holy crap. What just happened? How the hell did that kid get him to do that?

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#11

***

“He will need a table and chairs set up in the room, and things that he will be motivated to work for.”  Dr. Hunter’s office manager, Emilee, is reciting the items we will need to purchase before the therapists begin to come for the regular sessions.  I am scribbling furiously to keep up.
“Don’t forget to clear out a space in the closet for the binders and items they will need for therapy.  Oh, many of our parents use a video monitor so they can watch the sessions.  We don’t recommend you sit in on the sessions in the beginning because he will not react the same with you there.” I stop writing.  I cant be in there?  Again, that creepy feeling of some stranger with my son…

“A video monitor?” I ask, confused.  I am imagining a room with the wall of monitors.  A flash back to my former career in communications.  Our teleports had gigantic rooms with walls and walls of video screens all tuned into one part of the satellite or another.  My mind wanders as I wish I could wire Ryan’s brain and see it on different screens to understand what it going on in his head.

“Yes, you know, there are baby monitors that have a video screen.” Emilee says slowly.  As if I am the one with a disability.

Shit, those things are a fortune.  It’s not like I can go ‘register’ for all this stuff…as if I could have a “My child has Autism shower”How the hell are we going to afford all this

“Ummhumm, I know what it is.” I say, trying to take the sarcasm out of my voice.  I realize this is her job and she does it every day, but I don’t do these things every day.  And at this moment I am annoyed and again feeling resentment to this cold dish life has served me.

“I can email you the entire list if that helps.” She says sweetly.

“Yes, that would be great.” I say flatly.  I know she is trying to help, but there is just so much coming at me at once, ‘overwhelmed’ doesn’t even begin to cover it.  I begin to rub my temple as I feel a headache coming.

“So, Friday DJ will start. He will come for an hour the first time.  They will eventually work him up to two hours.  And then the afternoon session will be with Lisa.  That session too will eventually work up to three hours.” Emilee lets out a small sigh as if she too is exhausted by the thought of all that is ahead.

Five hours a day. That poor kid. It’s like putting him in the sweat shop. 

“Okay, thanks, Emilee.” I say firmly wanting to end the conversation.

“Thanks Mrs. Chergey, we will be talking more as time goes on.” She says a little too cheerily.

Yup, thanks for the help, bye.” I say and hang up quickly.

I feel momentarily bad for being sharp with her.  But there’s no time to dwell, I have to print, laminate and velcro pictures cards of each therapists.  I also have taken candid photos of our house, his school, our church, my in-laws house, and the grocery store.  I have to make all these into cards to put on his picture schedule.  We have tacked up a cardboard velcro board on the wall in the family room so we can put these cards on to show him what’s happening next.

Keeping him on a schedule will calm him.  Dr. Hunter’s says in my head.

Calm…that sounds a like a nice place to be for a change.

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#10

This is freshly revised section…I am interested in feedback. I had to shorten the actual episode so I hope it makes sense.

Also, I am coming up on a month of posting to this blog.  I am thrilled with the response, but still need more subscribers.  Please make sure you put in your email and then once you get a confirmation, accept it!  And send it on to everyone you know! Many thanks to you all.

***

I push the cart quickly as I can so we can get in and get out of the grocery.  I realize this is the first time I’ve taken him to the store with me since we found out…found out.  I say that like it was such a casual thing.  Like I stumbled upon something interesting in Reader’s Digest…Honey, did you know they found a new species of beetle?  I have to shrug off my mental flogging this morning.

First, I need coffee.  After another rough night of Ryan not sleeping, I order a large size and head to the produce section.  I give him cookies he seems content.

As I get to the aisle nearest the registers, Ryan begins to scream and thrash in the cart.  I am a little startled and reach for him to offer some comfort.  He wants none of this and to show me, digs his nails into my arm.  He then pulls so hard on my bracelet, it snaps and beads are sent sailing in a million directions.  I watch him, almost in slow motion, grab my coffee and throw it.  It too goes in a multiple directions as it crashes to the ground.

I am now completely distraught, my chest is heaving and it takes all I have to not yell or cry, or both.  Once I mentally count to ten, I am aware of the mess around me and am afraid someone will slip.  I am afraid to move, but his shrieks are radiating though the store.  I realize I have to abandon ship but I have to tell someone about this mess.  I jerk my neck in every direction desperate to find someone.  Ryan is now starting to kick me and begins climbing out of the cart.  I pull him out and get him in a death grip on my hip.

Finally, I see a woman coming around from the check stand.  She is smiling sadly at me.  Oh, good she must understand 

“Can you help me? I’m sorry; he’s made such a mess.” I say trying not to cry.

“Wow, that is a mess.” She says, looking at the disaster around me.

“I’m sorry I have to take him out of here, I hate to leave you with this mess…” I look at her for acknowledgment.

“Whasamatta wif dis wittle guy?”  She says in a baby voice that irritates me so badly I feel my fist clench.  Then she does something no stranger should do to any child, especially a pissed off, autistic child.  She starts walking her fingers up his leg trying to tickle him.

“Wooks like someone needs a nap.” Ryan kicks her hand away–hard.  I know it had to hurt, but she doesn’t say anything.  She pulls her hand down looks at me turning  her head as if asking “what the hell is wrong with him?”

“I’m so sorry…he’s…autistic…” I say hoping that’ enough of an explanation.

She smiles big and bright.  “Oh, that’s great!”

What the hell?

Did she hear me? I have one of those flash forward moments again, and wonder how often I will have to endure this stupid reaction.  Is the world still so dumb to this disorder? God I hate thinking these thoughts…I just want to run away…

“Uh…okay, I’m gonna go.” I switch Ryan to my other hip, grab my purse and walk slowly through the latte lake.

“Okay, bye-bye now, get that little guy his nap!”

“Sure thing…”  I wish that would solve it, lady, believe me.

I let a out a sigh and realize my arm hurts and I see four blood streaks down my arm.

I stare at it a second, and my eyes fill with tears.

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#9

Again, 500 words isn’t going to work on this episode.  I didn’t want to break up the introductions to Ryan’s team.  If you haven’t guessed, these aren’t real names.  Thank you for reading and please keep sending it on.

*

 “Um, I guess we should introduce ourselves.  My name is Brie,” says the statuesque, blonde, beautiful woman.  “Brie Lovegood.”  Lovegood? Seriously? Brie has no make-up on, but is stunning; her features are doll-like.  Her hair cascades down her shoulders to her back and she looks like she’s just come from the beach. I feel a womanly-jealousy for her beauty, yet her warmth makes her more breathtaking.  I have been pre-warned about how beautiful she is, and yes, she was a model.  I have also been told that she is the best of Dr. Hunter’s therapists.  “Dont let her laid back way of speaking fool you.  She is so intelligent and naturally gifted with autistic children.  So, she gave up modeling to help kids with autism?  The reality of that is so amazing it makes me feel so small.

“Hi Brie.” I say quietly and try not to stare at her.  She turns to her left to signal the next introduction.

“Oh, um, I’m Adam Berman.” Adam has a hard time looking at me; he seems uncomfortable or maybe very shy.   How can he teach my child to maintain eye contact if he cant handle keeping eye contact with me?  Stop. Stop being so negative.  I nod at him.  Dr. Hunter has told me about Adam too.  He is another one of her top therapists.  He has just returned from grad school and Dr. Hunter practically exploded with joy (in her reserved, professional manner) that he was able to work on Ryan’ team.

“I will be Ryan’ team supervisor.  Did Dr. Hunter explain all that already?” I nod and he shifts nervously as he rubs his hands on his jeans and looks quickly to his left at the next victim.

“Hi…Mrs. Chergey, I’m DJ…” his voice squeaks loudly and he clears his throat. ”DJ Sims.” The room grows quiet and everyone is looking at him.

DJ looks, and sounds like he’s just graduated high school.  His skin is shiny and tight like it’s just been washed and it has a hint of dark spots of healing acne.  How old is this kid? I can’t think of what Dr. Hunter has told me about him, I know she did, but it’s lost on me at the moment as I bite my tongue at the all too perfect ‘Peter Brady’ “when it’s time to change” moment.  If Dan had heard it, he would have immediately pointed it out and everyone would have laughed.  That’s what Dan does, he makes even the most brutal, horrific moments in my life funny.  He finds humor in everything.  He’s rubbed off on me over the years, but lately humor has eluded me—I almost don’t have the energy for it.   But it feels good to think of a joke right now, like I’m not the old and tired person I am becoming.

“Hi, DJ.” I say smiling broadly and stifling a laugh. I can’t believe I almost laughed in his face.  I sense a pause as they too are trying not to laugh at DJ.  He looks down and does not “pass the baton” to the next person.

“Guess that leaves me, I’m Lisa Gunther.” Lisa says as she almost glares at Brie.  I can’t blame her.  Lisa is very pretty too (are there no ugly women in this business?) but is at least a half foot shorter than Brie.  She seems less enthusiastic to be here than the rest, but I know that Dr. Hunter knows what she’s doing.

“Hey, Lisa.  It’s nice to meet you all.  Dr. Hunter told me she put her best on Ryan’s team…” They smile and nod back at me.  “Well, thanks for coming today.  This is all…new…to us, so we look forward to…learning how…to…” I think to myself bitterly how to deal with my son…I need strangers to teach me how to deal with my son.  I say instead. “Well…to getting started.”

They all still smile at me and I begin to rub my hands on my legs. What is wrong with me?

Dr. Hunter returns and relieves us all of our uncomfortable moment.   Dan comes in carrying Ryan and his frayed blue and yellow quilt.  My auntie made it for him when he was born.  It goes everywhere with him.  I have to literally pry in from his hands at night to wash it.  The group on the couch stays seated.  He looks at them, turns away and begins to whine.

“Hi.” Dan says a little breathless to the crowd while wrestling with Ryan. “I’ll get all the intro’s later.  Where would you like him?”

“Well, after you worked so hard to get him down here, I think he should go back up.  Sorry. ” Dr. Hunter answers.   “Brie, Adam, you two want to start? And DJ and Lisa can wait outside his room in the hall?  I’ll be there in a minute so we can discuss his programming.”

Programming? Is he a computer?

Dr. Hunter turns to me.  “Do you have a camera to take our pictures? That is how you will make his schedule in the beginning is with pictures.  If you can show him who’s coming he will be more at ease.”

“Sure I said, can we do it after we are done?” I ask.  She nods yes.

Dan tries to hand over Ryan, but he squirms out of his arms and runs to me and turns around.  I lean down to encircle my arms around him he presses his back to me and give him a quick squeeze as if to tell him It’s okay.  I let go and grab his hand as Brie walks to me.  She squats down slowly to look at Ryan.  She says softly as she looks him in the eye.

“Hey Ryan, let’s go upstairs. Hold my hand. O.k.?”

He looks at her quickly and I feel my mouth fall open and I stare as he puts his tiny hand in hers.  I slowly let go of his hand and we all watch them walk away in silence. I don’t know what I feel, but it’s almost like relief with a huge helping of sadness.

It is truly gut wrenching, that I am literally handing my son over.

 

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Installation #7

Week number three of the blog…it’s not setting the world on fire but we are growing slowly.  I really appreciate you reading and forwarding the link.  Don’t forget to subscribe. Again, I thank you.

*

“We will start with a team meeting.  I want you to meet all the therapists at one time.  After that, his sessions will begin, and then each month we will have a team meeting.  I already have a team picked out, and I’ve given Ryan my best.”   She smiles brightly and I realize not only is she one of the most articulate people I have ever met, she is just as beautiful, especially when she smiles.  It starts at her mouth and almost glows like fire up her whole face.

“Who are they…when does that start and when are the team meetings…?” I stumble over my many questions as I get the feeling my life is no longer my own, and will become one scheduling nightmare. How will I keep it all straight?

“I will have my office manager let you know the schedule. I know it sounds overwhelming right now, but soon it will be part of your day as well as his.  The therapists become part of the family.”  She says with that bright smile.

“Believe it or not, it will come to a point when he will look forward to it, and so will you.  Our families love having us, so they can use the time to do the dishes, take a shower, get bills paid, have a break.” Her smile grows and she winks at me.  It’s not a cheesy wink but a “no worries, it’s all handled” gesture.

The thought of actually getting something accomplished while the kids are home is a welcome thought, but the idea of some stranger spending time in my son’s room with him feels odd.  It goes against everything you’ve taught your children.  Dont talk to strangers…well he can’t do that, so one for him.  But the ‘having a stranger in his room with him’ goes beyond all parental reasoning.  I don’t even know how to process it right now.

“There is a lot we will be discussing over the next few months, but for right now, just know that you are the most important people on Ryan’s team.  Taking part in therapy and following through with what we are working on will give him the most success.  He really has such good indicators…” she pauses here like she is going to say more, and only smiles.  She changes the topic, but I let myself indulge in the idea that she would have finished the sentence with “being normal”.  He has such good indicators of beingNormal.  I repeat this in my head over and over.   I don’t know if she realizes what a gift she has just given me.

I just want him to be normal.  I know it isn’t fair to think this, but it’s where my mind goes these days.

We spend another fifteen minutes going over who the therapists are, their backgrounds, and the rules for when they are here.  As she is leaving, she purposefully steps in front of the TV and waits for him to look at her.  She says goodbye and he doesn’t yell this time, but he isn’t overly enthusiastic that she has interrupted his show—indicated by his quick whine.  She smiles brightly at him, walks briskly to the door and turns to us.

“I know it’s hard to see now, but believe me, in six months, he won’t be the same kid.” She smiles again and shakes our hands.  “Nice to see you, hang in there.”

We watch her walk to her car and I think…then who will he be?

 

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Installation #6

It is a struggle choosing only 500 words at a time (and I usually go over)…so please know it is as frustrating to me as it may be to you.  But, I have to constantly remind myself the mission of this “blog to book”: get a following and show this is a story people want to read.  Be patient and keep commenting, forwarding to people you think will enjoy it, and subscribe! Thank you again.

***

Dr. Hunter is sitting criss-cross on my living room floor across from me.  She’s come here today to assess Ryan for behavioral therapy or more precisely her specialty Applied Behavioral Analysis.  I watch her, amazed at her technique, and I realize something.  She isnt afraid of him.  So many of the specialists, speech pathologists and occupational therapists we have seen “keep a safe distance” from him, in case he lashed out, like he does a lot.   I also get the overwhelming sense that she is going to help him.  Help us.  I find myself sighing in relief even though I’m on the firing lines trying to get him to interact.

It’s a very strange sensation having someone “watch” you play with your child.  It’s a sensation we’ve had to repeat so many times in the last few months. So many appointments, observations, questionnaires…you feel like you are under a microscope.  Did I do that right? Should I have tried something else? Is he behaving correctly? What did they just write down in the file?  (How many times can people ask me if he will let me cut his nails or hair?)

After 20-minutes she asks if I will take him upstairs.  I realize I am sweating.  Small wet rings of sweat under my arms, and my forehead is damp—all this because I was hoping he would perform better. A little glimmer of hope that maybe Dr. Dirmel was wrong, he really isn’t autistic.  A dream, I know, but it’s still hard to accept the fact that he now has a diagnosis.  He has a disorder.  It’s such a strange realization, because to me he’s still just my Ryan, not a child with a disability.

Ryan decided to be openly obstinate today and I feel the sting of disappointment. He threw a puzzle at her, cried every time she looked at him, and dumped his goldfish on the floor.  I didn’t want him to be too autistic, …well, I didn’t want any of this at all, but here we are in this alternate life that I still can’t figure out if I’m awake or dreaming.

As soon as I leave him in his room with her, he throws the mother-of-all tantrums.  The whole works: lying on the floor in full bravado crying and screaming, kicking his feet, banging his head (which in a twisted way I find amazing that he can be lying down and pull his head up only to throw it back down…if I tried that my neck would cramp and I would be frozen in pain) all the while with his eyes closed.  I know from my reading, this is to shut the world out.  Wouldn’t it be so easy to shut it all out that way?  Yet, I think it actually works for him; he can cut himself off from everything simply by shutting his eyes.

Autism comes from the Greek word “auto” or self;   which seems ironic to me because, one thing my autistic child does not seem truly aware of is himself.   He doesn’t recognize how his reactions affect those around him.  Like when you are having company over and the children want to look at your son’s train table.  He doesn’t have the words to say to them, “please don’t touch”, so he turns to me and throws a train in my face and with incredibly accuracy, hits me.  Try explaining a black eye from your two-year old and see the strange looks you get.

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Installation #5

I hope you are able to understand the story just by these snipets.  Please enter your email on the right under “subscribe” so I can see how many of you are interested and what you think.  Thank you.

AMERICAN SOCIETY OF AUTISM YEARLY CONFERENCE

The banner over the speaker’s dais states in bold colors.  It has three primary colored puzzle pieces on it.  One piece is missing.  A void as if waiting for someone to put the last piece in.  That’s how my heart feels, like it’s lost a piece.  And now is waiting…

The room is four large ball rooms opened up as one.  Hundreds of chairs are lined up behind skinny tables.  People are coming in by the hoards and finding chairs.  How many people come to this? I wonder.  I open up my notebook to see the topic of the first speaker.  Words jump out at me and I recognize some of them from meeting with the doctor…ABA…discrete trial training…IEP.  I see Dan studying the notebook too with a puzzled look.  I have been trapped in my own grief for weeks, and I don’t know how he is feeling.  He has shown a brave face, but we haven’t had time to digest it all yet.  I touch his arm and he smiles quickly at me.  The microphone squeals lightly and a tall man in a ‘professor-looking’ jacket (with elbow patches and all) tries to get our attention.

“Excuse me everyone…hi…Ladies and gentlemen, welcome to the ASA’s yearly conference.  We are so happy you could make it and have some great presenters here today. If you could all find a seat so we could get started…now I would first like to do something different.  Could I have all the dad’s here today, stand up?”

I look at Dan confused and he looks puzzled too.  We see men beginning to stand up all around us.  Dan shrugs his shoulders and rises.

“Can we give them a hand?”  Applause.  “I want to recognize them all for being here; I know as a father of an autistic child, it was hard for me to get a grip on what was happening.  But I got involved…  And you being here today shows you are involved and it can only help your child in the long run.”  Loud applause. “I can tell you two years ago, there were less than half the dad’s here.  Be proud of yourselves.”  More applause.  “You are the reason your child will be successful.”

Dan sits down half smiling and I feel something spark in my chest.  I have always been proud of him and knew he was a great dad, but that moment brought me to a new reality.

Were there dads out there who didnt accept their children because of their disability?  Were there dads who didnt take part because they dont know how?  Fear grips me again.

Great. Another fear to add to my repertoire. Will he always be involved?

Then I look at him, really look at him—as if for the first time.  As big and as strong as he looks, he’s molten love underneath.  From the first day we found out about Ryan, he has been marching forward looking for ways to fight this.  I had been the “bull dog” detective (according to him) getting to the bottom of it.  But once I heard those words, I wilted inside.  I have stood next to him with my determined mask on, but inside feeling so lost and sad.  What would I have done if he rejected Ryan and I had to do this alone?  I shudder and hold back tears.  I have such a feeling of relief for at least one aspect of this battle.  For now, I know, well pray, he won’t give up on Ryan…or me.

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Installation #3

Good morning, I am amazed by technology and am really enjoying the responses I am getting from people I haven’t seen in years.  Thank you all for reading and promoting.  This is amazing for me.

 

For the autistic child, time matters

A diagnosis at age 2or even earliercould make a difference.

I pick up the newspaper, not sure why.  But by some luck I have been granted a spare few minutes to actually sit down to eat and the paper was open, almost waiting for me, so I take it.  I begin to scan the words in a side column:

Behaviors to watch: not cooing or babbling indifferent to othersfixation on a single object strong resistance to change in routineany loss of language.

The last words on the newspaper practically jump off the page– any loss of language.  My heart literally stops and I have to take a deep breath.  Ryan has lost his words–twice.  Both times seemed coincidental to having ear tubes, according to the doctors.  And I have asked and asked why he wasn’t talking again, but continually my questions are pushed aside by every doctor I inquired.  I enrolled him into speech therapy on my own to feel as if I was moving forward to help him, but even they wouldn’t tell me anything.  Hes fine.hes a boy.  Hes finehes a second child, his sister talks for him.  Hes finehes had ear tubes twice.  Each time giving me a nod and a pat on the arm that was supposed to qualm my fears.  Most recent was: Even if you had a diagnosis, the treatments would be the same.  Diagnosis? For what?

Hes fine Mrs. Chergey, stop worrying. Just waitit will come back.

Wait.  For what? I feel an urgency but didn’t know why, and no one wants to deliver any news to me.  I have been chasing my tail trying to figure out why my son had ‘changed’ and no one wants to leave me any clues.  It feels like all my questions are finally in black and white in front of me, yet I don’t want this to be the answer.

Early Intervention is the key to providing any success in an autistic childs future.

I don’t think he’s autistic.” His first pediatrician said to me after a three-minute exam.  I had asked him why Ryan stopped talking again. He had a second set of ear tubes but his words hadn’t come back.  Autistic—what the hell is he talking about?  Like Rain Man

I cannot read the letters anymore between my hands shaking and the tears that have filled my eyes.  These behaviors are all too close to my son’s.  

A spectrum.  The Autism Spectrum.  That’s what they are calling it? That sounds like a rainbow sticker for gay pride, not a name for what isn’t right with my son’s behaviors.

I read every word, twice, and begin to feel a sensation of being the subject of a camera zooming in.  My life has been laid out in these words and I didn’t know it.  There is a “spectrum” of behaviors that a child could be placed on.  How do you place a child on a spectrum?   It sounded so gentle, so kind, yet I feel like I am beginning to slide down a slope I can’t see an end to.

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Hello, to all I hope to call ‘readers’,

I am starting a blog that will reveal parts of a memoir I am currently writing about my son’s diagnosis of autism.

Recently I attended a writers conference, and met with potential literary agents.  I was quite taken aback to learn they were less than thrilled with my content.  “It’s been done” was said to me multiple times.  So, to prove a point to myself and them, I want to build an audience that can show them I’m doing it better. I will publish roughly 500 words each post and am looking for feedback if you choose to give it.    Thank you for your support.

Installation 1 of “Make A Wish For Me”

2004

Chapter 1

“It feels like he’s…died.” I muffle into a tissue as I blow my nose.

Feels so wrong to say that word about my very alive beautiful boy, but I have no other reference to explain my pain other than the sinking feeling of a death; a horrible open abyss that tries to pull you into darkness.  Roberta’s dimly lit; peaceful office feels like a boat in the middle of a still lake.  I want to lie my head down and sleep on the green chenille sofa.  The smoothness feels so comforting against the back of my calf.  I rub my hand along the cushion absently; Roberta nods and waits for me to speak.

“This wasn’t part of my plan.”  I say, my voice sounding very much like a computer.  I stare at her collection of crystal in a case.  A placard above the crystal case reads: Roberta Flemming, AAMFT.  I ‘Googled’ the acronym before this appointment.  The letters stood for:  American Association for Marriage and Family Therapy.  It didn’t matter if the letters said CPA, I needed to speak to someone outside my family and friends to try get a grip on my failing emotions.  I was given her card by my broker—why I asked someone who knew so little about my life, for a referral is beyond me.  We do strange things when we are in shock.  In a moment of generosity she reached out to me.  She wasn’t entirely a cold person, just all about her business, so her kindness and recommendation to Roberta was slightly shocking.  I’m sure anyone would have taken sympathy on me at that moment.  How pathetic I must have looked sitting at my desk; staring at my computer for hours not knowing what to do.  Stifling a cry I wasn’t ready to let out.

I need to speak to someone. Because, Im. so so sad.  The look on Dan’s face when I said this could only be described as surprise bordering on terror.  “I know you dont know it, because Ive been hiding it, but the reality is well, if I go down, we all do…”

My poor husband, he’s never had anything like this happen to his family.  Yet he marches on as if it’s normal.  Then there’s me.  I’m supposed to be the strong one, the fighter, the one who has endured countless family dramas and unusual circumstances.  And yet I’m retreating into myself…kind of like our son is doing.

“What was your plan?” Roberta’s voice shocks me back to present.

“Um, my plan? Well, I had it all worked out before I got married…get a house, have two and half kids, the dog…haul them all around in the Volvo…” I laugh out loud at my own joke, because I don’t drive a Volvo, but it sounds good to complete the so-called-All-American-yuppie ‘plan’ I had decided would be my life.  I was going to be different than the rest of my dysfunctional family.  My household was going to be perfect.

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