Tag Archives: autsim assesment

#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.

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“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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