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Change…

Change is hard. It usually involves having to do something differently than you have been accustomed to; like trying to eat healthy after a long holiday season filled with gluttony.

For most people on the spectrum, change can be quite difficult.  I used to think it was my son’s kryptonite. But, as he’s matured, and with proper prompting he has done better with new situations. Even last minute surprises are not as problematic as when he was a toddler and we were first figuring out how to deal with his outbursts.

Now, instead of lashing out at unexpected variations in his day, I see him turning internally and spending more time alone. I think this is a typical pre-teen reaction to transformations. And I think it’s good he is trying to process. Yet, I recall Jenna dealing with “teenage things” and asking me questions or turning to her social circle to figure out the world. Ryan doesn’t do this. He doesn’t ask me the types of questions Jenna did, like: “Why won’t she talk to me, I don’t know what I did wrong?” Or: “Why did she move away, she was my best friend?”

Ryan is more a big picture guy. The things that affect how he moves through his day matter most. Like, losing his therapist that had been with him since he was four. Nothing bad happened to her (thankfully), she just moved on to a new job. But this change is big. I would consider it big for anyone who had worked side by side with someone for eight years, but for Ryan is could potentially be catastrophic. His whole apple cart could turn over. Luckily she coordinated her departure to coincide with the holiday break from school; so he had a good transition period. And we prompted him like crazy that she wouldn’t be there when he went back.

Not to say he didn’t grieve for the loss of her, but he didn’t ever ask me why she left or inquire when she would come back, like Jenna may have asked. Maybe I didn’t give him the chance because I was so afraid of what the change would do to him that I kept talking about it. Maybe he didn’t have the time to worry because I continually reassured him it would be okay. Either way, I did notice him spending a lot more time in his room.

During that same school break, also came his orthodontic braces. For any kid having a metal bracket attached on each tooth is no picnic. There are many sensations in your mouth at once: the thickness of the brackets and how they tear at your cheeks and the tightness the metal causes on all of your teeth just to name a few. Coincidentally, Jenna was getting hers off the exact same day Ryan’s came on—the irony of that was not lost on any of us. But, I anticipated she would be a good visual to show the final result. Plus I thought I needed to tell him something tangible that the braces would do, so I told him we needed to make his teeth strong so he could continue to eat his favorite snack. He did great while getting the braces on: sat nicely and stayed calm–I was so proud. It wasn’t until later that evening when I realized how long he had been in his room alone when he came to me and said. “Okay mom, I’m ready for my new teeth.” As if the braces could work that fast.

Every time he tried to eat he practically cried from the pain. Ryan is a tough kid, so for him to say something hurts, it must be really bad. Needless to say, he didn’t want to eat much. And I heard the phrase “You have to take these braces off” a lot. He spent more time alone in his room those first few days. Processing: I assumed. Then, it was time to go back to school and he pepped up. I hoped he had found his way to deal with the braces. Ryan is one of the very few kids who wants to go back to school. He loves the routine, the schedules and the predictability. Even minus his life-long friend, he went back willingly. Even with the new braces inserted in his face, he was ready to roll.

Well, that’s enough change for now—I thought. Of course it wasn’t. We received notice that his school is closing. Let those words sink in for a minute. His school is closing at the end of the year.

For those of you who read my book, there is a considerable amount of time I discuss finding a school for Ryan when the public school was no longer an option for us. There are only so many schools in our immediate area and the continual ‘no’s’ I received were just one painful slap in the face after another. So the thought of finding another place that could fit all our needs, is to say the least, daunting.

More change… Will he handle it? Can he handle it?

He has heard us say the school is closing, but I don’t think he gets the finality of it. I don’t think I get it yet either. And I’m not ready to prime him for this change. Again.

So, what we do now is: pray; keep our fingers crossed; throw coins in a fountain; blow on dandelions; and send all the positive “vibes” we can to people in charge of Ryan’s school to keep it going…somehow.

I can keep the faith, and make wishes—that is what got me this far. But, sometimes I just really hate change.

 

 

 

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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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#44

The phone rings as I am typing up an offer for a client.  I see Crestridge  School on the caller ID.  My heart skips a beat.  I take a deep breath an answer the phone.  I know this is it.

“Hi Mrs. Chergey, its Michelle from Crestride.” She says evenly and I don’t know if this is a good sign or not.

“Hi Michelle, how are you?” I say trying to sound casual.

“I’m fine, thank you.” She clears her throat as mine goes dry.  “So, we heard back from our corporate office regarding Ryan attending our school?” She says it like a question.

“Um hum.” I say thinking it a safe way to respond.

“Well…they are willing to try.” She says and it sounds like she’s smiling.

I feel as if I’m free falling for a second.  I respond quickly unable to control my excitement. “Oh! Good! That’s great! Wow, thank you!”

She giggles a little at my gushing, “Well, let me tell you some of the parameters before you get too excited.”Uh oh. “The aides will need to be fingerprinted and screened–.”

“—No problem.” I interrupt.

“And we will do this on a probationary status.” She says this in a firmer tone as if to warn me.

“What does that mean?” I ask, nervously.

“It means, if there are any…issues, ones we feel are not reconcilable, we have the right to expel him.” She says ‘expel’ with a little too much emphasis.

“That is perfectly reasonable.” I say to her calmly.  And suddenly I am calm.  I have such faith in Dr. Hunter and her team I know this is what we are supposed to do.

“Okay, great.  Well, come by to pick up an enrollment package and we will get the ball rolling for next year.” She says happily.

We finish our pleasantries and I hang up and literally jump out of my chair and yelp for joy.  I feel relief as if it’s a tangible thing raining down on me.  I pick up the phone to call Dan and begin to waiver on the verge of tears.  I have these moments once in awhile.  As a mother of any child you have moments that move you to tears, but since Ryan was diagnosed I seem to have them more.  As if carrying around his diagnosis added a physical burden that seems to break me more often.

“Hello?” Dan says and I can tell he’s in his car.

I try to speak and nothing comes out. I begin to clear my throat and instead I sob.

“Lee? What’s the matter?” His voice pitches in my ear.

“Nothing, I…I just wanted to give you some good news.” I say and sniff while I’ll grab for a tissue.

“Are you crying?” He says concerned.

“Yes…” I heave my shoulders and let out another sob.

“Babe…what is it?” His voice is so tender it makes me cry more.

“Everything is fine. I…heard from Crestridge.” I sniff and sob and wipe my nose.  “They are going to let us in on a probationary basis.”

“Really? That’s great!” He says a loudly.

“I know, I know. I’m really happy.” And another sob comes out.

He laughs at the irony and says “Yeah, it sounds like you are thrilled.”

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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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#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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#27

*

I walk up to the park to lay out a blanket under a rooty tree in the shade.  Looking at the small blue chairs lined up close to the tree I know this is a good spot–I want a front row seat.

June 6, 2008-not only is it Jenna’s 7th birthday but it is Ryan’s preschool graduation.  He has done it again…surpassed our expectations.  His teacher thinks he’s ready to go on to kindergarten at our neighborhood school.  Another unexpected event.  I had resigned myself to him attending this school that was more tailored to special ed.  I didn’t even know our school had any special ed services.  Jenna has been there two years and I hadn’t really noticed.  But far be it for me to question—I am just thrilled he will be “mainstreamed”.  That word always evokes an image of salmon swimming upstream.  But whatever picture I have, it means he gets to be a real kid…in a real class, with “typical” kids. The district gave us a full time one to-one aide at our third IEP—even though we have become semi-professional at them, they still evoke so much stress.  But, I don’t want to think about boring meetings and minutia right now, I want to allow these blessings that are raining on me to drench me.

The park for the ceremony is directly next to the school he attends.  And across a wide ray of green grass I see a little blonde head running towards me.  He is running ahead of his aide and his best friend, Tanner.  Apparently they were allowed to leave a few minutes ahead of the rest of the class.  He calls out “Momma!”–still the most beautiful word spoken, and I stand up.  He breaks into a wide grin as he runs.

Whenever he smiles the light that hits his eyes–even sunlight–pales in comparison, and outside in this bright light he is showing the sunshine up.  He runs to me, and I scoop him up, both of us laughing.  Never taking for granted a hug or kiss from him.   Bliss.  True bliss is oozing out my pores.

“Let’s go Ry, Ry!” His aide says and I send him away with a playful swat on his behind to join his class.  They begin to put on their handmade graduation hats and line-up.  I look at him and wonder what other people must see.  Laughing and playing with his buddies, he looks so “normal”.  Perhaps because he’s in line with other special ed kids, but I can’t help thinking he looks so much like…a typical kid.  I cannot stop the tears and do not even try until the ceremony is over.

As each child takes their “diploma” I am sailing down memory lane with select moments in his pre-school class.

The preschool was such a wonderful place for him—he overcame so much and achieved all he set out and more.  We are so lucky to have this school, his amazing teacher, and all the aides.  They have collectively propelled him out to the real world.  What an accomplishment.  Even though summer starts today, I can’t wait for September.  So I can finally have both my kids at the same school, together, at last…just like everybody else.

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#22

Today’s post reveals where the title  comes from (in case you missed it somewhere, the title is “Make A Wish For Me”) Feedback on that would be helpful, as a title is really important.

*

We celebrate Ryan’s third birthday in relative quiet.  He loves chocolate chip cookies, so I bought a cookie cake from the store and Jenna, Dan, and I sing to him.  He delights in the candles and smiles so brightly.  His smile has such a way of igniting my soul.  It thrills me every time he smiles because I am painfully aware of how blessed I am that he can show emotions.   I’ve read about many autistic children who have no emotional response to most everything.

True to Dr. Hunter’s words, he is not the same kid.  Well, not the same tantruming, screaming unhappy kid, he’s actually happy now.  What more could I ask for…

We saw immediate changes in him when we started the therapy.  It’s hard for me to believe it’s been a whole year–already.  How I dreaded that initial time getting used to the sessions and learning all that was required of us just to teach him how to fit into ‘our world’;  and keep him from going too deeply into his.  Program after program, behavior after behavior, we climbed with him in his successes and progress.

Tomorrow we are going to look at the preschool program the school district has in place at an elementary school nearby.  When you have a child with any “delay” you are allotted services by the county, like speech and occupational therapy, depending on where the delay lies.  Upon the child’s third birthday they become “property” of the school district. Therefore, if you want to continue services, it is customary to place them into one of the district schools.  We want him back in school with other children, but he has not been in a school setting since we took him out last year when we started the in-home therapy.  His last experience with school was not necessarily bad for him, but not so great for the other kids.

Brie attended school with him for a few weeks and reported things to us that the school had never mentioned about his behavior.  He was very withdrawn from the class and played alone a lot.  He had become the ‘mafia boss’ in many ways.  The kids were mostly scared of him and stayed out of his way.  If one of them got too close, he would clock them with whatever toy he had in hand.   And if he wanted a toy they were playing with, he simply took it away.  Even children at that young age were perceptive enough to know not to mess with him.  They were all communicating in their early language, but Ryan’s body language was crystal clear.  “Don’t mess with me”.

Putting him back in school brought excitement and trepidation for me.  We weren’t going to have his therapists with him to help him and we would have to go back to relying on a school for information about his day.  We have become spoiled with the therapy going on right at home and we hear the progress as they work or are given a detailed account of his session.  We also have monthly team meetings where we talk about his progress, set new goals, and are an integral part of all that is going on with him: emotionally and developmentally.  It is very hard to think of letting go of that control and leaving him in a new environment without us or his therapists as a safety net.

He blows out his candles and I snap a quick picture of his sideways smile.  I turn away and wipe a tear as I make the wish for him.  I know he doesn’t understand the tradition of making a wish before you blow out the candles, but I do.  So I make the wish for him.  And it’s no longer for him to be” normal”.  It’s for him to continue to be happy.

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