Tag Archives: IEP

#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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#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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#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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#32

The last day of 2013 is upon us.  I am looking forward to 2014 as it will be the year this story gets published (one way or another).  I thank you all again for reading and commenting.  Happy New Year.

*

This is it. This is the solution.  It’s what we did in the beginning when the county gave us ten hours a week of behavior therapy with a less than average company.  I knew then that wasn’t going to pass muster, so we did what we thought best and went directly with Dr. Hunter’s company.  It was the best thing we could have done for him.  And now that I realize I still can do whatever is best for my son.  I am not locked into public school just because he’s “disabled”.  I have a choice; I have the ability to do what I want.  My heart is soaring.    I practically run out of her office to call Dan.  I feel like a lawyer about to face a judge and jury.  It’s going to be a battle convincing him, but I know in the end I will.  We have to get Ryan out of that place.  He is failing at every turn and reverting back to the uncontrollable child we spent four years getting on track.

I will not allow those years to be taken away.  Hard, hard work not just by us—but him.  Especially him.  He has worked harder than any person I know.  My sweet little boy brought himself back and I will not allow him to retreat again.

I take slow deep breaths to steady my nerves as I reach for the phone.

“Are you ready for this?” I say to Dan. Practically squeaking with glee.

“Oh no…what now?” He sighs loudly.

I concentrate on speaking slowly as I am a very fast talker and when I’m excited I jumble words together.

“I’ve got it. The solution.” I stop and take a breath.  I want this to build his anticipation.

“Solution to what?” He says quickly, I can’t tell if he’s impatient or excited.  I opt for excitement and go for the kill.  I smile for a second.

“To school.  For Ryan.” Slow down…I take a silent deep breath. “There’s a lot to it, so let me paraphrase.  I met with Dr. Hunter.”  Take a breath… “Bottom line: we put him in private school.”

There is a pause and I’m not sure if he’s there. Crap! I went for the kill to quickly. 

“We can do that?” His voice rises as he asks.

“I said the same thing!” I almost shriek at him.

“Easy there, tiger.” He’s teasing me and I don’t care.

“There’s a lot to explain, I just wanted to put in your head to percolate on today. Okay?” I ask hoping he is hooked.

He makes a slight groan. “Percolate?…Ahh, yeah, we need to talk about this when I get home.”

Not the rousing vote I was hoping for, but he didn’t shoot it down right off the bat, so I feel excited.

“Okay, what time will you be there?”

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#31

“Dr. Hunter, I really am completely at my end.  There is no part of me that can stand this any longer.  Now they can’t even keep him safe.  When I asked the case manager why they didn’t stop him she said they couldn’t.  So I said, ‘you are telling me if he runs in to traffic, you will just let him go?’.  ‘No, of course not’ she said.  But, they can’t physically restrain him because of ‘certain laws’.” I say in air quotes.  I heave a big sigh.  I am on the verge of tears and have to pull it together.  Each time I think of my baby running off the school grounds, I begin to shake with a combination of fear and rage.

“I just want your people with him.  I just want the safety net of their behavioral experience.  I don’t understand why they won’t let me bring you in.” I say more to myself than her.

“It would take a lot for that to happen.  There are plenty of advocates and attorneys that could help you fight the case.” She says quickly.  She has said this to me a few times before I know how careful she has to be with her advice. But whenever she mentions hiring an advocate,  I shoo the idea away.  We are not litigious people and the thought of things getting to that make me more ill than now.  Plus, do I really want to fight for him to be in a school that isn’t even outfitted for special needs?  No wonder I never noticed and special needs when Jenna started at the school…there weren’t any.  And I know I would have to go to court every year to get her aides back in the school.  It seems ludicrous.

“You could always consider a private setting.  We work in many private schools in the area.” She arches her eyebrows as she says this.

Private setting. My mind is putting these words into perspective.  “As in private school? Can he go to private? Doesn’t he have to be in public school? Because of his disability?” I ask this and hate the way ‘disability’ comes off my tongue so naturally now.

“No, Ryan’s education and where he attends is completely up to you.” She says matter of factly.

“But what about the IEP?” That word always makes my tummy squirm a little. It still  has such ‘Pavlov dogs’ power over me.   I didn’t know we could do anything but what the IEP says.

“You can refuse the academic setting and place him where you like.   We have many clients who have done that.”  She begins to mention some schools she has worked in the past, but my mind is racing.  She then leans back in her chair and folds her hands together while resting her elbows on her chair.  And she waits.

I sit in amazement for what probably seems a long time to her.  I can take controlI can put him in private school and be in charge again.  I can have a say in what is best for him.  No more frustrations, no more telling them about a problem and three months later it begins to get addressed.  I am in awe at this whole idea.  Why hadn’t I thought of it before now? Of course I have a choice.  What I feel right now is borderline euphoric.  In an almost dream sequence I can see Ryan with our therapists at school.  I can see a lunch time with them there helping  and encouraging peer play.  Yes…this has to be it.   All the tension leaves my body and I exhale peacefully like I’ve had a long massage.

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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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