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#47

I know they won’t approve it, and in my mind our journey with the school district has ended.  I feel bittersweet.  I don’t want to separate my kids now that I have had them at the same place; I don’t want two school schedules, two drop off times, two pickup times, two different holiday breaks.

But I also can’t bear to have Ryan go through another school year with doubts about the aide and their training  even though we write in the IEP the aide must have training, we know it us just semantics “training” can be a one-day seminar to them.

I am relieved to be free of the monthly meetings that accomplish nothing.  We openly discuss his issues, shortcomings and offer behavior plans that are never looked at.  When we go back to the next meeting nothing has been done to “fix” his issues.  Whatever progress he’s made has happened at home with us and Dr. Hunter’s therapists.

I am glad to be free of the fear they could change his aide at any moment.  The language is clear in the IEP they have the right to change.  And they have.  It was like a revolving door for a period of two weeks.  The aide assigned to us had some personal family issues.  And instead of putting herself out for two weeks, she called in everyday, leaving the district little room to provide the same aide.  It wasn’t their fault and I did sort of feel badly for them scrambling each day.  But I did not appreciate the repercussions it had on Ryan.  It was the beginning of his downward spiral.  A beginning to what made us consider ending his career at public school.

The clincher for me was after the Thanksgiving break.  I put their backpacks in the closet as usual for the weekend.  And as it was a long weekend it was in there awhile.  I hadn’t realized how visually significant that was to Ryan.  When I got the backpacks out on Sunday he started to cry.  And in his “broken” verbiage he pleaded to me.

“No school…no school. Backpack in closet. Backpack in closet.” He wailed.

In his short life, he had never tried to persuade me so vehemently with words.  There were many times he used his fists or legs to show disproval, but this was really communicating with me.  I felt my heart rip in two at the dichotomy of this: my baby was conveying his feelings so well! My baby is begging me to not take him to school…

“Well, that’s it. What do you think?” Dan says bringing me out of my thoughts. He leans back in the chair and stretches his arms over his head.

I sit silent still rummaging through my thoughts.  I don’t have the energy to sum up all I’ve been thinking so I just shrug and think for a few seconds.

“I guess it’s what I expected.  Just glad it’s out there.  It feels like we’ve been lying to them or something.” I confess to him.

“Yup, we put them on notice and now we just go forward with what we planned.” Dan nods as if confirming his own words.  Then he stands up. Well, I gotta get going.  I’ll see you later.” He leans down and kisses me and walks out.

Yes, what we planned.  We. What WE want…yes, it feels good to be back in control.  I smile a broad smile with satisfaction.

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#46

“Are you going to say it or me?” I ask Dan as I hit the mute button. It’s time to throw down the gauntlet.

“Me.” He says firmly and sits up straight and pushes the speaker button.

“Jim, the bottom line is if we can’t bring in Dr. Hunter’s aides we are seriously considering pulling him from the school.”

I can almost hear the clang as the words drop on his desk.  There is a few seconds delay and I feel as if we are in slow-mo.

Pulling him? Where would you go?” He says and his voice is high. He seems agitated.

“We have some options we are looking at.” I say, trying not to sound smug.

Where?” he sounds high pitched again.

“We are looking at various private schools in the area.” I again say trying not to smile. Like a kid with a secret.

“Oh…private.”  He sounds relieved for a second.  “I have to say, I’m shocked.  I didn’t see this coming.” He trails off.  Is he…sad?

“We’ve done our best to have a good working relationship with your family.” Again his voice falls. Yup its sadness.

Then I have a pang of guilt.  I remember that Jim is pretty high up in the school district and doesn’t usually take part in the IEP’s.  I found this out from another mother who was trying to get services for her son.  We compared notes about our respective IEP’s and she did not have Jim there.  She was surprised when I told her he was taking such a big part of ours.  This woman’s son did not have near the issues Ryan did and I was surprised what lengths she was going through to get him services.  She even hired an advocate and was getting nowhere with the district.  After she told me the price of the advocate, it sealed the deal for me for just pulling him and moving on.

I feel I need to explain a little to him because he seems upset.

“Jim, we are very proud of our relationship with you and the district.  We have been a great team and appreciate all that you have done for us and all the time you have taken with Ryan’s case.” Dan rolls his eyes at me as it is apparent I’m laying it on thick.  I wave him away.

“We are not litigious people and did not want to go that route to get what we wanted for Ryan.”  I let my pseudo-threat hang in the air for affect.

There is an uncomfortable pause and I’m not sure if he is still there, and then I hear him shuffling papers again.

“Umm, well, I see.” His tone has changed and I’m not sure what he is thinking.  “I will speak to the school district’s attorney and get back to you with an answer.” He is back to being all business.  This makes me a little sad as he had so many moments in our various meetings that showed he really did care about us.

“Thank you, Jim we appreciate your time. Goodbye.” Dan says mirroring Jim’s business tone.  Dan hits the speaker phone to disconnect.

And it’s done.  We sit silent for a second.

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#45

“Yes, Jim, please?” Dan says into the phone.

“May I tell him who’s calling?” A polite voice asks through the speaker.

He leans closer says slowly and loudly.  “Dan and LeeAndra Chergey.” I don’t know why Dan feels he must speak so loudly on the phone.  I put my finger over my mouth to give him a silent shush and shake my head.  I can imagine the lady on the phone pulling the phone away from her face, as I have to do often when I speak to him.  He gives me a frown.  We are sitting in our home office, huddled around the phone.  It’s time to give the public school one last chance to give us what we asked and then give them the news of our decision.  I feel more nervous than ever.  Maybe not nervous, but shaky.  We have nothing to lose here; we’ve made up our minds and know what we want, yet this is our check mate move.

“Hold for one moment, I’ll see if he’s available.  The voice says.

My heart skips a few beats and I try to calm my breathing. I cover my mouth to soften my sigh.  Dan is writing the date and time on his legal pad and looks up at me.  He pushes mute on the phone.

“What’s wrong?” he whispers.

I laugh in his face. “You muted the phone, doofus, why are you whispering?”

He cracks a wide smile as a voice comes over the speaker.

“Hello Mr. and Mrs. Chergey, Jim here.”

Dan jumps to hit the mute button and says quickly.  “Hello, Jim. How are you?”  I’m glad he spoke because suddenly my mouth feels like sandpaper and I feel lightheaded.

“Great, great. Just tying up some loose ends before the district goes on summer break.” He says and sighs with a high pitch that it almost sounds like an ‘aahh’.

“Ah…uh….” Dan looks at me as to who is taking the lead again.  I point to him. “So, Jim, we wanted to speak with you today about the letter we received.”

It has been two months since our last IEP meeting.  We didn’t sign at the meeting as we weren’t sure what we wanted to do. And once I convinced Dan we should put him in private school we were waiting to find one.  Now that we have found a place to start over, we want to give the district one last chance to agree.  They sent us a letter outlining a plan that would allow Dr. Hunter’s aides in for a few weeks then fade them out.  It isn’t what we want and now it’s time to lay it out.

“Okay, go ahead.” Jim says.

“Well, we really were hoping for the approval of Dr. Hunter’s aides at school.  We don’t think having them shadow the school aides and then fade is going to work. I don’t think I have to re-hash the problems we had last year.” Dan pauses for effect, and it is works on me as the memories flood back and my face flushes with anger.

There is a shuffling of paper over the phone. “Um, yes, well, I believe we have discussed that enough.”

Dan looks intently at me as he speaks. “So, here is where we are at…we aren’t willing to keep him at the school if we don’t have Dr. Hunter’s aides.”

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#39

Maybe we are supposed to be here. I think to myself as I walk through the parking lot to pick up the kids.  He could be purple and they accept him.  Well, they have to accept him at public school, it’s the law.  But still.  I had no idea it would be such a challenge finding a private school.  If you are paying, they should welcome you. Right?  At least here they don’t discriminate against him. That’s it…it’s the discrimination.  That is why I was so upset at that saint-something private school.

Earlier today, at the last stop, another “Christian” school, I am met with similar reception as the saint-something.  The young woman I met there wasn’t as crass as the other cross-wearing hypocrite, but she made it clear they have never “done” anything like this and I would need to meet with the principal.  I scheduled a meeting for the next day.  I barely got out of the parking lot when they called to reschedule.  She was going to be busy for “awhile”.  I did politely tell them I would call back later to find a time that worked.  But I knew I wouldn’t.  I didn’t want them if they didn’t want us.

My euphoria of getting him out of here has vanished leaving me disheartened and sad.  I hear the classroom door open and the loud children start filling out.  I stand up and see Ryan’s aide and walk towards her to get a report of the day.  Instead she keeps moving quickly and yells towards me to ‘have a nice day’.  What? That’s it? I weave through the kids to classroom door and peer in to see Ryan playing with some blocks.

“Hi.” I say to his teacher. “Everything o.k.? Terri rushed away and didn’t give me a run down of the day.”

His teacher looks at me with a puzzled look . “No, he had a good day. Not sure why she didn’t speak to you.  Maybe she had to pick up her daughter.” She says with a perk in her voice that I am guessing is supposed to make it better.  That ‘mother-to-mother’ thing.  Whatever. She could have told me that. 

I hate not knowing what happened in his day.  The school IEP team didn’t want to do a communication journal from the aide, because I see her after school.  But it’s days like these, and there are many, I have no idea what his day was like.  I can’t expect his teacher to give me a breakdown of every minute, since she has 25 other kids to worry about.

“Yeah, maybe.” I say but with a harshness in my voice.  I see her pick up on my mood, because I am normally very positive and try to be appreciative. I see she has three other moms waiting to speak to her so I let it go and walk over to Ryan.  I stop for a second and stare at him while he’s playing nicely.  Maybe I shouldn’t move him; maybe it isn’t so bad here… at least he isn’t black labeled or treated like he has a disease…

We walk to our car like any other day, yet it isn’t to me. Today is the day I felt the first sting of intolerance, and prejudice.  All because of a word.  What if I told them he had AIDS or cancer? Would they have acted the same? I sigh and realize it doesn’t matter.  I don’t like the reaction I received and now I have to start all over again. 

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#38

“We don’t do, um, special needs.” Her words hang in the air as if they are written in smoke.  Now my mouth is open and I am showing my disgust.

“You don’t do, special needs?”  I ask the sarcasm clear in my voice.  She looks firmly at me. Wow. Did I hear her right? Isn’t this supposed to be a school centered around God? She starts nervously straightening the spilled brochures avoiding my eye as I pick up my portfolio.  I know I have to leave or I might start cussing this lady out, right under the giant crucifix and I don’t want that sacrilege on my karma.   I turn quickly and walk straight out.  I don’t even say goodbye or ‘thanks anyway,’ I just leave. I don’t give a rat’s ass about how rude I seem I just know I am not going to let them see me cry.  My shoes click, click, click down the hall wishing I had worn flat shoes so I could walk faster.  I try to control my shallow breaths.

Reaching the car, I jump in and start it up and do everything I can not to peel out. Though I sort of want to.  I want them to hear how fast I want to get away from them and their pseudo-bigotry.  My heart is pounding and I am beginning to sweat. My chest is heaving and my eyes are starting to water.   Man, adrenaline is an amazing hormone.

I pull out of the driveway and park down the street where I’m sure they can’t see me.  I take deep breaths and try to calm down.  I can’t decide if I’m mad or sad.  I know I’m horrified.  I know people who send their kids to this school.  I wonder how they would feel if they knew they were bigots.  Bigots with big crosses on their necks! I dig in my purse for my cell phone and dial Dan’s number.

“Ohhhh, I’m so mad!” I yell into the phone.

“Whoa, you’re hurting my ears, what’s wrong?” he demands.

I tell him my story and wait for the outrage from him.  But it doesn’t come. He is silent.

“Oh, forget it.  I’ll see you later.” I say and start to hang up the phone.

“Hey-wait! Relax a second.” He sighs quickly.  “You can’t expect everyone to get it right away.”

“Yes I can!”  I yell. “This is the two-thousands and autism shouldn’t be a pariah!”

“A what?” he asks. I can picture his face screwed up in a question and I am annoyed that he doesn’t understand my big words (even if it was one I heard on the Howard Stern Show) and isn’t as frustrated as I am.

“Never mind…” My anger is fading.

“What is it, babe? Why are you so upset?” he asks tenderly.  I know he is trying, and I have to wonder myself why I am so upset.

“It’s just all of it, all this…I don’t know…I gotta go.  We can talk about it later.”

I know we will when we get home, over a glass (or two) of beloved wine.  We will talk it out like we do everything.  Today he supports me, other days I support him.  And that thought alone propels me on.

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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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#35

“Good morning.” A young teacher says to me with a quizzical look on her face. I am still leaning against the wall next to Ryan’s classroom.  I had been lost in thought for who knows how long.  I realize how ridiculous I must look and I laugh out loud as step away from the wall.

“Ah, good morning…it’s his first day…I’m just making sure…ah…” She is walking away smiling.  She must know about Ryan or me, or just gets that a first day at a new school can be hard.  This new school has all the makings of a life changing events for Ryan.  I just hope it works.  I can’t bear to take him back there.  That moment of wondering what happens when I wasn’t around was such a foreshadowing of what was to come.  The journey to get him to this new school was not quite as painful as our time in public school, but it was surprising to me the resistance I was met with just finding a school that would welcome us.

***

            My agenda is set for the day.  I have three private schools I want to look at.  My conversation with Dan was surprisingly easy; which only makes me more determined to find a solution.  I have scoured the internet for local private schools.  One school, Dr. Hunter has recommended in particular that she has placed students in.  It’s a twenty to twenty-five minute commute from our house.  But I would carry him there myself, everyday, if that’s what it took to make school a good experience for him again.  The other two are closer.  All are Christian-based, small, private schools.  Those words: small and private, tingle like fairy dust in my ears.

I start with the school the most far away.  It is so small I have trouble locating it.  I drive past the unassuming driveway twice before I realize it is part of the school.  The school sits high on a hill and has a great view…and 12 parking spaces.  Taking that “small” atmosphere a little far.  I shrug it off and venture into the office.  No one is at the reception desk.  I think it’s odd but I wait.  And wait.  I can’t get onto the campus due to locked gate out of the office so that makes me feel better about security, as I’m fresh off the terror train of Ryan “eloping” at school.  Eloping:  apparently that’s the technical term; as if it sounds better than “running off campus”.  I think it sounds like he’s gotten married.

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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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