Tag Archives: autism diagnosis

#43

“Well,” Dan turns to me briefly, arches his eyebrows as if to say…‘I got this’ sighs, and begins our usual story about Ryan. I let him do the talking.  He does a good job.  I often swell with pride when he talks about Ryan.  It reminds me that he could have easily set him aside and left it all up to me, but he is such a willing participant in the journey.  She sits back in her chair and steeples her fingers for a few seconds.  I feel as if I’m going to implode right there.  I can tell she is deep in thought.  I look at Dan quickly but he only shifts his eyes not his head.  As if he is sending her telepathic messages.

She then stands up and excuses herself to go speak with the principal.

After she walks out, Dan turns to me and says in a whisper. “This could work in our favor.” I nod and smile weakly.  Can’t get too excited…We wait in silence both of us staring straight ahead.  I’m trying to make out the mumbles I hear next door.

What feels like a short eternity passes and Michelle leans in the doorway. “Could you two join me in Mrs. Wilbur’s office?”

We practically jump from our chairs and follow her to the office next door.  She motions for us to take two seats and then walks behind the desk where Mrs. Wilbur is sitting.  Mrs. Wilber looks up at us.  She has thick glasses and very short brown hair.  She smiles nicely, but I sense she isn’t thrilled.

“Well, Mrs. Johnson has filled me in on your…situation.” She smiles thinly. “I have worked with special needs children before, so I know the challenges you have probably faced.”

Doubt it.

“I also know you understand how differently we operate from a public school.” She tilts her head.

“Yes, we understand.” I say sweetly.  I am gonna kill her with kindness.

“We’ve had aides here in the past and it…” She looks at Michelle quickly. “Didn’t go so well.” Then she looks down at her desk.

“In what way?” Dan asks.

She studies him for a second. “The aides weren’t…um…let’s say they were less than professional.” Her mouths makes a straight line and I can’t tell if she’s trying to smile or frown.

“Well, I can understand your hesitation,” I say with my sugary sweet tone, “But Dr. Hunter’s company has worked with many schools in the area who would be happy to give you a reference.”  I once again find my heart beating quickly and can’t stand the agony of rejection and again looking for another school.  Michelle is smiling sweetly at me and I implore her with my eyes.

“We are happy to consider this for you, but we need to make a few phone calls and speak to our corporate office.” Michelle tilts her head.  “That sound good to you guys?”

My heart skips a beat…I want to jump up and kiss her.

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#37

*

The office is dim in the Episcopalian private school (close enough to Catholic for me)  so I have to stop for a second to adjust my eyes. There are three women in the office and I glance around at each of them.  No one looks at me for too long and it seems like none are in a hurry to get up and speak to me.  One of them stands and exits out a back door, leaving two.

“Excuse me…?” I say meekly as I place my portfolio on the high counter.  I notice quite a few crosses and crucifixes on the walls.  A middle-aged lady at a far desk finally looks up and smiles slightly.  She stands up and walks towards the counter.  She is wearing white leather ked tennis shoes and dark blue polyester pants.  No logo shirt, just a sensible loose blue blouse.  I can see a tiny gold cross peeking through her high collar as she reaches the counter.

“Yes, can I help you?” She says flatly with a weak smile that stops at her lips.

“Yes, I wanted to get some information on your school.  Can I speak to you, or should I speak to the principal?  I didn’t make an appointment.” I realize I’m talking fast and stop to let her answer.

“I can give you the basics.  Here is a brochure on the school.”  She hands me a small, white folded brochure with a collage of smiling children’s faces.  I glance at the bullet points inside with the schools many accolades.

“What would you like to know?”  She asks, tipping her head slightly.

My mind starts racing.  I realize I have not “practiced” what to say.  At the first school they had experience with Dr. Hunter so I wasn’t nervous.  Now all of a sudden, I am.  I’m not sure what to ask, so I decide to tell our story.

“Uh, well, my son is in first grade, and will need to repeat.”  I clear my throat and try to make myself speak slowly. She is looking pensively at me.  I’m sure thinking what kind of disciplinary problem is he.

“He had a rough year in public school and we would like to put him in a private setting.” I use Dr. Hunter’s words “private setting” as they sound more professional. I look at the other woman, sitting at a desk.  She looks interested so I am encouraged to keep talking.

“He’s autistic, and we didn’t quite get the proper aide support for him.”  They are both looking at me as if I am the most interesting person in the world, so I bravely go on.

“The school district tried, God bless them, but they just couldn’t quite get it right.” I force a small smile hoping I’m not sounding like another complaining parent.  And I think the “god bless them” is a nice touch.  Not one I had planned but goes well with the environment.

“Oh.” She says and turns to look at one of the other women in the office, then back to me.

“Uh, we don’t offer that kind of, uh, support here.” Her face looks like a cross between surprise and panic.  I realize the way she says ‘support’ what she is thinking.

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#36

The classroom is huge and has at least 25 children working in different centers.  It is organized chaos.  Mrs. Thimer,the first grade teacher, is in her late fifties, reddish hair, wearing khakis and a colored golf shirt emblazoned with the school logo. She extends her hand and takes mine.

“Hello, welcome.” She nods and waits for me to speak.

“Hi,” I say loudly above the din.  “Nice to meet you.”

She smiles.  I smile.  I wonder what I’m supposed to do next.

I decide to speak. “Uh, so, this is a mixed-class?”

She looks confused.

“I saw it on the door, kindergarten and first grade.” I say trying to explain.  “My son will be repeating first grade, so he would be with the kindergartners as well?”

“Oh, yes, well, we spend part of the day together.” She says simply.

I can tell she isn’t much of a talker.  Man this is going to take forever if she’s not going to be more forthcoming. I decide to get right to the point. 

“I was recommended by Dr. Hunter.  My son is autistic and she said she has successfully placed her clients here before…with her aides.” I hope this opens the dialog.  Mrs. Thimer finally perks up.

“Oh, yes, Dr. Hunter! That student is in the third grade and doing well.” She stops and smiles again.

Holy crap, this is gonna take all day.

“So, tell me about the class and the school, and what it would I need to do if I wanted to put my son here.” I say trying to sound patient.

She nods as if she understands, but pauses and then looks away and says something to her students.  My heart is starting to pound I didn’t realize how desperate I was to get into this school.  How desperate I am to get away from them…I feel like I’m on a dating show.  Please pick me

“Well,” Mrs. Thimer looks at me closely and speaks slowly, “we don’t have any spots open for next year in first grade.”

I feel the air escape my lips in an exasperated sigh.  I fight to not say “shit” out loud.

“Oh…okay, well is there a waiting list?” My disappointment has to be all over my face.  I just assumed they would have room and welcome us like family.   It just seemed so perfect.  And I felt like it was the right place.  It seems a fast way to make a decision, but the Realtor side of me can make quick judgment calls based on appearance.  Just like showing a house, I can evaluate the merits of the property by the look on my clients face.  I give them the option of just pulling away.  They always asked if it was okay.  Of course it is, curb appeal has that much power.  And this school had all that and more for me.

“Oh sure, sure.  We can get all the papers filled out and put you on a list. No problem.  Would you like to see the rest of the class and the playground?” She asks.

I nod and follow her but only hear part of what she’s saying.  My gut is telling me it isn’t going to work.  And after I look at the class size, I’m not all that impressed.  It’s the same size as he is in now in public school and it could be too loud and confusing for him.

 

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#34

A minute later she strolls casually back into the classroom.  By my unofficial watch she has been gone twenty minutes.  Twenty minutes that my son wandered around the “hands-on” fun activities that he didn’t get to participate in because he didn’t know how.  There is no explanation by her, nor any apology.  I am barely able to say to her “we were looking for you”.  She only smiles and takes him away.  I am too mad to say anything further or to stay in the classroom.  I have to leave or I will tear this woman’s hair out.  I march straight to the principal and tell him what has happened.  He shows no shock or horror.

“I’m surprised she left him, she’s one of our best aides.” He says simply.  As if that is supposed to erase the last twenty minutes of my son being unsupervised.  I realize he is going to do nothing and I remind myself to be as un-confrontational as I can.

“What would have happened if he walked out that door?” I say as evenly as I can muster.

His eyebrows rise only slightly as I see clearly he is trying to keep a poker face.  I feel a redness spreading up my neck.  It’s anger, re,d hot anger.  I unclench my hands and realize I have left deep nail marks, dark purple and in my own hands.  I stare at them a minute trying to calm myself.

“It would have been a very bad day if he had gotten hurt.  Bad for all of us.” I look up into his eyes hoping my threat is heard loud and clear.  I wait to let the emphasis take its affect and stand to leave.  I decide I have to say one last thing to him.

“She needs to be with him, right next to him at all times.  That is what a one to one aide means.” I don’t speak again, I know from experience the one who speaks last in negotiations usually looses.

He nods, stands up, and reaches out his hand.

“Thank you.” I say and walk out.  But he didn’t speak…does that mean I lost?

Thank you? For what? Endangering my kid and not even giving a shit?   Wow. This is not the way it was supposed to go.

Then I have a thought that stops me in my tracks.

If she leaves him like this when I’m here…what does she do when I’m gone?

 

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#33

***

I hide around the corner and creep back to his classroom to peer into the window to see how he is doing.  It’s his first day of first grade.  Well technically this is his second, ‘first day’ as he is repeating first grade.  I turn my body against the wall hands in front of me, as if I’m about to be frisked.  Ever so slowly, I slide in front of the window.  Leigh looks up and smiles.   I only allow myself a small peek and slide back…It’s like I’m on a stake out.  I let out a huge, happy sigh of relief.  I am almost being bathed in it.

Ryan is sitting calmly and getting out his books.  Leigh, our new therapist, is sitting next to him.  He looks calm and is taking out a book.   Today is her first day of school with him.  She’s seen him over the summer and is doing fine.  He likes her and she likes him-no small feat since he has seen so many people come and go at public school.  It’s almost made him more gun-shy to new faces.

I stand there for a few minutes waiting…waiting for an outburst or something.  But after a few minutes I chuckle and know it is fruitless.  She has this covered.  She is a professional—as are all Dr. Hunter’s aides.  They have never had problems with him and if they did, they know exactly how to handle it.

Standing there with the image of him being calm, I wonder why I was worried…well, duh, it’s because of how he acted at public school.  The memories come back in big waves and my stomach flutters recalling it.  Remembering in a word: frustration…

*

It seemed the whole experience was a battle.  Kindergarten got better after a few months and he learned the routine.   But his aide was very “hands off”.  To the point she would leave him alone for long periods of time.  One in particular being the thanksgiving feast; THE most fun of all days in kindergarten.  They had spent weeks preparing, making t-shirts and hats and drums.  Because I had taken part in it with Jenna, I knew how great it was.  So, I was there to volunteer again. I was engrossed in my job helping make tortillas; and I spot Ryan wandering around.  A few minutes later I still see him aimlessly wandering–alone.  He disappears inside and I assume his aide is with him.  But he wanders past me again and I watch him go back into the classroom.  What is she doing?  As his mother, I have to check.  I remember the horror I felt walking into the completely empty classroom and seeing the opposite door was wide open—the door that led to the parking lot.  My mind goes to high gear as I begin to think: he’s gone outside…how far would he go…would he cross the street?  I lunge forward to run out the door and my eye catches movement in the far corner.

“Stop!” I yell as he is just about to grab a hot dog off the rolling hot burner.  His aide is nowhere to be found.

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#30

As the big holiday is here, I send out my wishes of cheer and love, mostly love to you all.  Thank you from the bottom of my heart for reading this.

*

Fed up.  Done. No more.  These are the thoughts I hear in my head constantly.  I feel I am literally at the end of my rope.  There is nothing left of my patience.  Two years.  Two years we have tried to make it work  and I just can’t any more.   I can no longer tolerate their inability to help him.

I am waiting outside Dr. Hunter’s office.  We have a meeting today to discuss my options for Ryan’s schooling.  I trust her opinion today as much if not more than I did four years ago.

Ryan’s academic “career” at the public school has completely derailed. ‘Off the tracks’ is an understatement.  I can barely manage to watch him when I volunteer in his classroom.  The only way I can describe it–a caged animal.  Acting out worse than he ever did when he was first diagnosed.  Hitting, kicking, scratching and spitting.  Spitting is the worst in my book.  Not that any of the others are great, but when someone spits in your face it’s very demeaning.  When he used to do it to me, it took all I had to stay calm and not spit back.  I can’t bear to watch him to this to this poor district aide.  She flinches and jumps every time.  Playing right into his hand.  He wants these reactions from her—and he gets it.

Most days I enter the class and don’t even recognize him—his actions are so unlike the little happy boy I have at home; and there are days I don’t think he knows I am there.  I leave each time either crying or fuming…most of the time I have to leave early because I can be a distraction when he does realize I am there.

What am I doing to him? What are they doing to him?  Why can’t they see this isn’t him? Why won’t they let me bring in Dr. Hunter’s people? Why, Why, Why??? I feel as if I am full pot of water that is bubbling and boiling about to pour over on to the flames.  I am lost in these thoughts when she opens her door and smiles brightly at me.

“Hi. Nice to see you.” I know she means it when I look in her eyes.

“Hi.” I say quickly.  As much as I enjoy small talk, we have to get down to brass tacks as her hourly rate far exceeds mine.

The week before Dr. Hunter had observed Ryan at school at my request.  After the last terrible day I swore I would witness at school, I called her and asked for help.  She said she needed to see him in the environment and I naturally agreed.  She called me later that day and calmly told me that Ryan had run off campus.   What?! Ran. Off. Campus? The words take a minute to register in my head.  And I sit dumbfounded holding the phone in my hand.

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#29

Today I celebrate another year on this earth and I am greedily going to ask for a present from each of you.  If you could send this blog to one person and encourage them to subscribe I would be most grateful.  I would love to add ten new subscribers today.  I think we can do it.  Thanks in advance.

 

*

We enter his class and it is in a word:chaos.  The tiny classroom is literally crammed with people.  All the parents jockeying for the best place to take pictures of the kids on their “spot” on the rug.  Everyone seems to be talking at once and it is extremely warm. The volume is loud-even for me.  Ryan seems o.k. with it, only a little startled.  His aide, Kathy, spots us and tries to say hello over the din.  He pays no attention to her as I take him to his cubby and help him put away his back pack.  He looks only mildly anxious.  Until the singing starts.  When the music is queued, it is at such an unusually loud level, everyone jumps a little.  Ryan, decides to scream.  Like he’s never screamed before.  But, because the music is near deafening and many other children are crying, he doesn’t stand out that much.  Except when he pushes over a few kids, and stiff arms a few parents out of the way to escape the classroom.

I stand in complete shock, mouth open, frozen, unable to process the situation. His aide too, is stuck in what looks like horror.  It takes me a two-Mississippi-count to realize he is gone.  When my wits come back to me, I run out the door after him.  This is not what I expected at all and am totally unprepared for him to react this way.  I mean I wrote a story. I grab him as he is running down the hall and pull him into a hearty embrace.  This is absolutely the opposite of what he wants, but I have no clue what to do.  I hold him with all I have.  He is crying and wiggling trying to get away from that craziness.   I can’t believe I didn’t prepare for this.  All these years of behavioral training should have assisted me in this crisis.  Yet, I am completely at a loss.  As is his aide.  Because it takes her a minute to find us and we both chuckle uncomfortably.

“Wow that was unexpected.” She says trying to find humor.  Normally I am the first to throw out sarcasm, but the fight Ryan is putting up has me preoccupied.

We wait until mercifully the music stops and parents start to file out.   Ryan finally stops trying to escape my grip, but everything about him says he wants no part of this and we try to go in.  We have to literally pull him inside while he is screaming.  One girl is sobbing uncontrollably on the rug as her mother is trying to disentangle herself.  Looking at her, I don’t feel as bad, but still so unsure about it all.  Luckily his aide has the presence of mind to kneel down and talk to him as I am still somewhat shell shocked.  She somehow gets him to let go of me and bribes him to sit down.  The teacher literally shoos me out of the class and shuts the door.  In my face.

And then I am standing in the hallway. Alone.  Even the mother of the sobbing child is gone.  I am left there wondering if he is o.k., should I leave?  I wish Dan were here.  Why didn’t we have a better plan, a contingency plan?   Why didn’t I go over this in more detail with Dr. Hunter? Because she can’t.  This is no longer her realm.  We are in this with the school from now on…

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#28

*

Kindergarten: the most magical year of school for a child. Its school, but it is fun. Really fun. I, naturally, do not remember much about kindergarten. But I remember Jenna’s. And it is the most precious year. The beginning that almost whispers a promise of what school could be—if you stayed in fairyland forever. But the best part about it to me now is, we are taking my sweet boy there! To kindergarten!! I hadn’t let myself believe it would happen “on time” for him. I always figured he would start late due to his delays. Yet here we are with all the other five-year olds. I am more excited for him than I have ever been for school. This is a huge testament to the last three years of work. Not just work for his therapists, or for us following each protocol as instructed, but for him.
So many people say to me “wow, you are doing so much for him.” It’s a truth I am aware of, but you can lead a horse to water and he still may not drink. We put all the tools in front of him but he didn’t have to do it. And there were times we thought he wouldn’t. We were told by Dr. Hunter, one of his “good indicators” is his desire for approval. He likes it when he gets rewarded. Many autistic children don’t care, and seem to be fine existing in their mind only. But, as his mother, I know he wanted to come back to us. He didn’t want to go to the dark place away from the world. He wanted to be here—with us. For moments like this—at least I try to convince myself of that.
We have prepped for weeks with pictures of his “new” school. His new teacher. New classroom. I created a ‘social story’, to explain to him what would happen. Social stories are used with autistic kids to reinforce a new situation. It’s a simplistic book that has pictures and outlines each step of a new place or activity. The first page says “My new school” with a picture of the school from the front. The next page says: “My new teacher” with her picture. The next page: “my new classroom”, “my friend, Kathy, will help me in class,” etc.  We read it a few times a day to him so when the day comes it won’t be so foreign. He seems to be rolling with it and I am on cloud nine.
The first day finally comes. So much excitement–mostly by me. We are up, dressed and take our “first day of school” pictures on the front step of both kids. Each equipped with shiny new back packs and outfits. We shaved Ryan’s hair into a “faux-hawk” just to give him enough of a rebel image. In case the kids picked on him. He looks adorable and completely normal.

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#25

IEP’s are probably the most talked about issue in special education.  Curious what some have you have experienced…

*

I have no idea why my stomach is flipping over inside me.  Nothing has happened.  No one has spoken.  But I want to run away. Instead I take a ragged deep breath and look blindly at my notes and not actually reading.  I begin to realize why I am freaking out.  I know now why I didn’t sleep last night and have been anxious for days.

It’s the very idea that we are in our child’s IEP.  Yet another acronym that somehow is supposed to sum up our lives.  IEP, IEP, IEP! Those three little letters have been so foreboding and ominous like a storm cloud in the distance, and now it is here.  We are officially on our way to a life with special education.  Our beautiful boy will be enrolled in special ed.  Does that mean he will go to a “special” class? For how long?

I now understand why these meetings could, and do, go horribly wrong.  If the other parents are as worked up as I am, I can see why they start banging their fists and demanding things.  The emotions are overwhelming.  I feel as if my skin is on fire.  I am hyper-sensitive to every move in the room.  I am so stressed and it hasn’t even started!

Calm down.  This is for Ryan.  And I start to slow my heart down to concentrate.

The next three and a half hours, yes THREE and a half hours, trudge along.  The process seems overly formal at times–like we are at some sort of medieval civic meeting in Old London where the grey-wigged governor says things like “what say you?”

As everything is being “recorded” via furious notes by multiple people, things have to be repeated and re-repeated many times.  As well as the goals being typed into a computer by the school psychologist as he asks questions out loud like:

“Is everyone in agreement Ryan has been placed on the autism spectrum and is by law eligible to receive services by the school district? All in agreement” He says barely glancing around the table.  “Please put that in the notes”.

It is amazing to me how this psychologist’s (let’s call him Mr. Psyc) personality changed from when we saw him at school to sitting in this conference room today.  I almost think it isn’t the same person, except he is very recognizable.  Showing us around the school, Mr. Psyc was very pleasant and overly forthcoming.  While discussing the “epidemic” numbers of Autism and his life-experiences working with children…he actually started to cry.  Seriously. Real tears streaming around his bifocals and all.  Dan and I were frozen in shock—neither of us daring to move until we could figure out if he was for real or not. I dared not look at Mr. Psyc for  too long for fear I would either laugh in his wet face or wrap my arms around him and cry too.

Eventually the tears subsided, perhaps because we didn’t acknowledge them or he was embarrassed. He walked us to the parking lot and said we would receive instructions for the IEP soon.  The tour and strange meeting were over.  We (and I mean I) had alleviated our (again I mean my) trepidations about the school.  Sitting across from him today I wonder if he remembers his emotional outburst.  Perhaps that is why he can’t meet our gaze for too long.

After long discussions about Ryan’s disability and short comings, we get to what he needs in the way of “support”.  As if he’s an old woman’s sagging breast and needs a Victoria Secret lift.  I try to take it all in stride but I feel so alien, so foreign to this process.  As if soon I will awake from this strange dream.

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#23

Sending  my best wishes of thankfulness to all of you who are reading and sharing our story.  If you haven’t seen the “similar reads” page, check it out.  I thought some of you would like to read other memoirs about autism.  I continue to read them and will post.

*

The school is not far from our house, and I realize upon walking the extra-wide halls, it is set up for physically handicapped children.  Reinforcing that he is considered handicapped and will be placed into that category until…until I don’t know when.  There are cases of children being “removed” (not cured) from the spectrum—I allow myself that hope that he will be removed of that label one day.  Being at home with his therapists has kept us in a safe cocoon, one where I am not faced with this thought as often.  We spend so much time celebrating his victories; we don’t “compare” him with other children very often.  On most days I am able to not compare him to his own sister.  Sure there are moments, but overall  I can keep them separate.

It’s not like we never see other children with “issues”.   I take him to physical and speech therapy at the county office where we do see other children with disabilities.  But they are quick sessions and I don’t have to think about his disability or others for too long.  I have always had a tender spot in my heart for disabled children, who doesn’t?  But it usually brings me to tears to see them.  How am I going to bring him here every day and see these poor children and not cry?  As if on cue, a woman pushes a little boy by us in a very elaborate wheelchair.  I can’t tell what his handicap is, but he can’t hold his head up very well, and is strapped into the chair.  I try not to stare at him, but I am locked in on his face.  He is incredibly handsome—strikingly.  He could easily be a model…if he wasn’t…I stop my thoughts.  If he wasn’t what—handicapped?! I want to kick myself in the shins.

I think back to when Jenna was a baby, I had signed up with a talent agency for her to be a child model—well, she was incredibly adorable, if I must say so.   We went on many calls, and one in particular was for a big department store catalog.    Jenna had two small red “strawberry” birthmarks one the bicep of her arm and one in the center of her chest.  I never even thought twice about it being something that would hold her back from getting a modeling job.  That was easily photo shopped-right?  Apparently not.  These department store people might as well have been looking at an oozing sore in the middle of her face, they acted so disgusted.  Over a birth mark…seriously? Needless to say, she didn’t get the job and we stopped her “career” after that.  It seemed too silly to me to teach her to be overly concerned with such small natural things.  That’s how I feel now.  Like I’m talking myself off a ledge to have Ryan go to school with handicapped children. Sometimes acceptance has to punch you in the gut to make its point.

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