Tag Archives: mother’s story about autism

This too is temporary

Most parents don’t want to dwell on their children’s deficits.  We want to focus on their strengths and celebrate their victories.  I believe this to be true whether our children are typical or unique.  But in the realm of autism or any special need, sometimes you have to put your cheer leading hat aside and truly acknowledge where your child’s weak points are.  It is a necessary evil if you are going to help them improve.  Being brutally honest is not my strong point, but one I have to turn to more than I like.   I was always taught to focus on the positive of every situation or person.  I strive for this daily and although I’m not perfect, I do believe it is one of my strong points.

To my own fault, I have to fight hard to see the negatives in Ryan or Jenna.  It’s like my positive blinders are made of Teflon. Like my heart won’t let me see them in anything but a glow of perfection.  Because they are perfect to me.  But, when a situation arises and I force myself to come face to face with a shortcoming, it hits me hard.  To admit to myself either one of them can’t do something or won’t be able to for a long time, literally breaks my heart.

I know I am not alone in these feelings.  I  need to remind myself of that, but there are moments in juggling the life of an autistic child, I feel desperately alone.  Even though Dan is an amazing partner, and I have a fantastic support system; it’s just my nature to take things so deeply.  To a dark place where hurt lives and makes me feel so heavy.  I try not to visit that place often, but sometimes I can’t avoid it.  Not when it comes to my kids.  Perhaps it’s because they were once physically part of me that they remain hard wired to my heart.

I will come out of it.  I will put my positive hat back on, and get my boxing gloves out.  But just for a day, I will allow my heart to be heavy and grieve a little for the things my sweet boy isn’t able to do…for now.    I know we will work to change these things.  We always find a way to bring him up, and he always finds a way to surprise us with what he can do.

I will never give up on either of my children and even when I have to face a blip on their map of life, they are still perfect to me.

As a wise man once told me as I was crying upon his departure, “This too is temporary”.

 

 

 

 

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Vacation

“Can you call your brother’s and ask them to send pictures of everyone?” I ask Dan, looking down at my long list of items I have to take care of.

“Like family pictures?” He says distractedly while reading the newspaper.

I sigh a big sigh and shoot daggers at him with my eyes.  I wait un-patiently for him to get my message and begin to tap my pen loudly on the table.  He doesn’t budge.

“Hello? Are you new to this? You know I need face shots of everyone, so I can make the pictures of each person. And I mean everyone–all the nieces and nephews,  Uncle Ed, Aunt Bev and whoever else your brother has invited.” I say in most annoyed tone.

“Oh…yeah, yeah, right. I’ll let them know.” He says still not looking away from the paper.

“I need them like, yesterday, Dan.” I snap.

“I know, Lee.” He looks at me like he’s eaten pickle juice.  He puts the emphasis on my name so I know he’s annoyed too as if I couldn’t tell by his facial expression.

I look back down at my list, too busy to continue my annoyance with him.  Just making the PECS of all the people going is a mountainous job.   Copying and pasting, sizing all the pictures to one page, printing it out, cutting, then laminating and cutting again.  Then there’s the Velcro…I hate Velcro.  After the first few times, the scissors get so sticky you can barely get them to open.  So, you have to stop and use nail polish remover to get the gook off.   And considering I will need to make at least twelve of them, it will take at least an hour if not more. I need those pictures soon…

We have been planning this vacation for almost a year and now it is here.  Dan’s family reunion to the Outter Banks of North Carolina.  I am so excited for the trip but am so anxious for just getting there.  Will we really be able to take Ryan on a plane? He’s been on one before, but it’s been a few years.  He was practically a baby then and it didn’t seem to bother him.  It’s as if he has awoke from a ‘sleeping beauty’ nap and now everything upsets him.  Like his skin is on fire all the time.

“Brie is packing the therapy items, but I need to make sure we have some things for the plane.” I say out loud looking at my list.  How the heck am I going to get all this done before we leave? I sigh again. Thank God Brie  is going with us…we could not plan this trip without her.  He still needs therapy twice a day and there would be no way to take him out of that routine..

“Hey–” Dan reaches over and takes my hand to show me he’s not irritated anymore. “–Keep in mind how excited you are for this trip.  You’ve been talking about it for months. And, you were the one who was so gung ho to go…remember?” He raises his eyebrows.

“I know…I am excited.  It will be great, I’m just worried…about the flight, the house, the pool, cuz neither of them can swim, and …well…everything.” I say in exasperation.

I am actually thrilled to go; we have been holed up at home for so long, the thought of getting away is exhilarating.  Just thinking about being together with his brother’s and their families is exciting too.  We don’t see much of them as they live on the east coast, but we did see them a lot when we lived in Connecticut for a few years.  We had such great times hanging out with them I know it will be a laugh fest.  I am just not sure how Ryan will do.  The unknown of how he will act or react to them all of them, and just all the change is enough to make me on edge.

 

 

 

 

 

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Thoughts for the day…today is “The Magic Pill”

A good friend mentioned to me today, that she misses my posts.  (If you haven’t noticed, I am in a holding pattern for posting any more chapters for the book.)  After I took my bow of flattery, I wondered if not posting would affect the other readers on this blog.  She convinced me that it would, so you can blame her for what I plan to do next.  Because quite honestly, I miss posting.  I miss telling stories about my family and the amazing journey we have been on.   I miss reactions and feedback to some funny and some heartbreaking episodes in the book.  So, as I am currently editing and adding sections to the book, I will continue to post even if it is out of order of the story or those posts may not make it in the book.  I will continue to put messages out there that I hope speak to you. Here goes the first “thoughts for the day”.  (Don’t worry, I won’t call it’ thoughts for the day’, that sounds too much like a daily affirmation calendar, I will come up with a witty title.) So make today’s: “The Magic Pill”.

Ryan’s 1st grade teacher, gave me a book called “Rules”.  The book is about a teenager girl who has an autistic brother.  “Ms. Abrams”, the lovely lady who took such an interest in Ryan, thought it fitting for Jenna to read the book also.  Jenna was in fifth grade at the time and started reading the book first and quickly had a question for me.

“Mom, in the book, the girl wishes for a magic pill to take away her brother’s autism…do you wish we could give Ryan a pill like that?” She asked me seriously.

I had to take long breath in and find a suitable answer.  If I’m being honest, the immediate answer is Yes! Of course! What mother wouldn’t want her baby to be “normal” again?  But as I quickly reflected on Ryan and all that he had been through and all that I had grown to appreciate about him, from learning to speak to seeing his crooked smile more often, I knew my answer.

“No, Jenna, I would not want a pill to take away his autism.” I looked at her to make my point.  She had a surprised look at my answer.  I spoke slowly so she could really hear what I was about to say, and to make sure I said it right.

“This is the way Ryan is, and without his autism, I don’t know who he would be…I wouldn’t’ recognize him…I like him the way he is.  He’s just Ryan.” I crossed my arms as a final statement that I meant it.

She sunk into her chair, as if my answer were too heavy for her.

“Oh.” was all she could reply.

I waited a few beats to see if she had anything more to add.  I could see her eyebrows knitted together as she thought.  It didn’t take her too long and that only proves the amazing kid that she is.

“Me too, Mom, I like Ry the way he is.” She smiled sweetly and I knew she meant it too.

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#55

*

Watching their hair blow in the wind and their small bodies bounce with the waves, I stare at them instead of the beautiful desert mountains surrounding the lake.  I am caught up in emotion watching Ryan sit close to his best friend, William at the front of the boat.  There has never been a different answer to the question, “who is your best friend?”  Since he could answer it, it was William.  They met in pre-school and quickly showed interest in each other.  I have learned the life lesson that you can count real friends on one hand, but for someone who has trouble with social skills, even one friend is an oasis in the desert.  So, I clung like a life preserver to William and his mom, and did all I could to foster Ryan’s first and only friend.

William doesn’t suffer from autism; he has a chromosomal issue that is very rare and has caused him some developmental delays.  I honestly don’t see the delays, and I think he is the cutest thing I have ever seen, next to my own.  William is gregarious and silly and outrageously funny.  When I met his mom, Jess,  I decided instantly we were going to be friends.

Jess, and Rich have invited us to their lake house for a few days.  We have spent many evenings at their house, poolside, celebrating the boys respective birthdays or just family barbeques.  It’s tough to meet another couple and like both of them, plus meet a family who can handle Ryan’s issues—even welcome him.  And even though they don’t have the same set of issues, being under the umbrella of a family with a special needs child is comforting.   So we happily accepted the invite.

“Can I jump in, Dad?” William asks Rich as he slows down the boat.

“Sure!” Rich says with enthusiasm.  Jenna and William’s older brother, Tyler, quickly jump up to the side of the boat and leap in the gleaming water.

“Come on Ryan.” Williams turns to Ryan, who is standing back looking cautiously at the water.

“It’s okay. Watch me.” William says and leaps off the side.  Ryan watches as William comes up and laughs happily.

“Go on bud, jump in.” I say to him.  He hesitates for another second and then climbs up to the seat and bounds off.   His head doesn’t go under as he lands in the water, keeping his hair dry.

“Hey! How did you do that?” Tyler asks in amazement.  Ryan doesn’t answer him, he is swimming after William with a huge smile on his face.

“Mom, did you see that?” Tyler yells from the water.

“Yes! Wasn’t that cool? Ryan, that was awesome!” Jess says smiling.  She turns to me, “how did he do that?”

“He always does that.  I don’t know how…” I turn to watch them playing. I feel a swell of pride at something that Ryan can do that the others can’t.  “His swim coach said that is a life-saving technique she learned, to keep your eye on your victim.  It’s supposed to be really hard to do.”  I am smiling so hard, the back of my head starts to hurt.

“I think he is kicking his feet before he hits the water.” I trail off my thought as I realize I should stop gushing about Ryan’s silly “ trick”,  but the look in Jess’ eyes reminds me she knows how to appreciate all the things our kids can do.

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#53

*

“Horse! Horse! Wook , Mommy, Horse!” Ryan yells from the back seat. His face pushed up close to the window…hands spread wide.  We pass a few stalls of horses on the long drive.  I’m thrilled he’s excited because it’s not often he gets this passionate about something.  But sometimes even with the picture schedule; I don’t think he really gets what I tell (and show) him we will be doing.  I made a new piece for his schedule with picture of him on a horse and next to it the words: “ride a horse”.   Per Dr. Hunter’s group, I now make his schedule with pictures and words, so when he gets better at reading we can take off the pictures.  I love the idea of him actually reading a schedule.  I am a calendar freak, always have been, so I appreciate making his daily schedule.  I have to do it for myself.  And I know how much it keeps him organized and knowing what to expect.

“Yes, bud, I know.  You are going to ride a horse today.” I say for the fourth of fifth time today, as I pull in to the dirt parking lot.  I think we are still a way from just words on his schedule or words to remind him.  No mater, he’s happy to be here right now and I am too.

This isn’t just horse lessons, its ‘therapeutic riding’.  I thought we should try it as he loves horses and maybe we can find something he can be involved in.  Therapeutic riding isn’t a new concept, and I had looked into when he was first diagnosed, but most of the places weren’t close by.  When I was looking to have a horse riding birthday party a few months ago for Ryan, the Riding  House Therapy Group came up in my internet search.  They didn’t do parties, but I liked that they were nearby.  When we saw how much he enjoyed his birthday, I decided to give it a try.   I liked that they served all disabilities as well as autism.

He opens his door and starts to jump out before I can turn the engine off.

“Hold on Ry, you have to wait for me.” I practically scream.  I quickly pull the keys out and swing wide my door to block him.  I grab his arm and then reach in for my purse as he is struggling to get away from me.  He is straining his neck around the door to see the riding ring with a horse, rider and three assistants.  Wow three people to one rider.  That seemed like a lot, but I can see the rider has a physical handicap.  I’m pretty sure, it’s for safety.

I grab his hand and walk down the gravel way to the small area with picnic tables and cabinets.  We are spotted by a lady in a straw hat.  She smiles broadly at us.

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#51

I must have a defeated look on my face as Miss Sally pulls up next to me.

“How’s it going? You guys okay back here?”  Miss Sally asks me.

“Oh, we are fine.” I say unconvincingly.

She smiles at me. “Really?

After the twenty-five minutes of chasing Ryan I am truly worn out.  Not just physically, but emotionally.  I don’t know how I can keep this up.  It really is pointless.  He gets absolutely nothing out of each class.   I was going to speak with her at the end of the year, but decide I could lay it on her now.

“Mrs. Sally, this is…Ryan has such a hard time…the class is just not made for his…” I stumble trying to figure out how to tell her nicely that it isn’t worth anyone’s time him coming to this class.

“I know what you are trying to say.” She says with a sweet smile on her face.  She always looks like she has a secret.

I feel the guilt rising up in my throat as I gain the courage to tell her we just aren’t going to come back next year.  I have been researching special needs catechism and did not come up with much.  But Dan and I decided after a long evening of me venting after class that maybe he just isn’t ready and we wait until he’s older.

“Mrs. Sally, I think it best Ryan not attend–“

“–I know what you are going to say.” She interrupts me.  “But, I’m going to ask you a favor.” She stops her wheely chair and turns it to look at me so I stop.  This seems serious.  Ryan is walking ahead of us with the other children so I keep one eye on him.

“Be patient.” She says simply.

That’s the favor? Be patient.  Does she not know that every part of my day involves more patience than I ever knew I had?  My whole existence is commanded to be patient with him.  Right now I feel Luke being spoken to by Yoda.   “Do or not do, there is no try”… doesn’t she know the painstaking ends I go to have patience?  I can only imagine the look on my face because she smiles even broader.

“I’m working on something…something really great, to fit the needs of kids like Ryan at our church.  I’ve got a group who need their own class.  I just need more time to get it organized.”

Oh! She doesn’t mean to be patient with him, she means with her.

“Oh, okay.” I say happily, realizing my blunder.

“I will get you some information over the summer.”  She starts to turn her chair to indicate the conversation is over, and stops again. “Don’t give up on us okay?” She doesn’t wait for my answer only wheels away.

 

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#48

*

“Let’s go guys. It’s time for Church School.” I yell up the stairs as I stuff my binder for into my bag.

“Noooo…I dunt wan go!” Ryan yells out from his room.

Jenna skips out of her room down the hall with a big smile.  She has always liked going to Church.  I am often amazed at how good she is—good to her core.

“Okay mommy, I’m ready for church.” She smiles at me and I smile back briefly.

“Okay, go wait by the car we will be there soon.” I turn back to the stairs and try again.  “Please Ryan, it’s time to go.  I have your m’s…” Silence.   “If you are good, we will go to McDonalds after church school.” I say in my best encouraging voice.

“Noooo!” He yells again.  I sigh and try to think of another tactic.

‘Church school’ is a simple name we created for Ryan rather than calling it CCD: letters that don’t really mean anything.  I had to look it up when Dan couldn’t remember what it stood for: Catholic Catechist Discernment.  Which is just a fancy way of saying: learning about being a catholic and then deciding to be one.

I check my bag of tricks to make sure it’s all ready.  I have made a portable schedule and taken pictures of every part of the church, and the teacher.  I have m & m’s, oreos, a train, a ball, and a slinky.  I have been trying to modify the typical first year catholic program for him.  It’s not been easy trying to make it systematic and fun at the same time.  All the activities involve things he could care less about, coloring, cutting, gluing and then there’s the God thing.  Explaining God to an autistic kid is tough, heck explaining to an adult is just as hard.

We started the year okay, but have gotten progressively worse.   He now realizes there is no actual gain for him.  Autistic children are very driven by what makes them happy, and this doesn’t make him happy, therefore he doesn’t want any part of it.  The picture schedule doesn’t help as much as it should, my bribes no longer work, and earning stickers for candy isn’t working either.   I dread Wednesday’s now because I know how draining it is.  I end up chasing him almost the whole class and by the end of the hour and half…one of us is screaming or crying, or both.

This is an area I don’t want Dr. Hunter’s group to help with.  I have some sense of pride that I can do this.  I took the class to be a CCD teacher and I’m going to do it.  But, I realize more and more I’m not really a teacher.  The other kids are great and I try to help “teach” the class, but Ryan is what takes all my attention.   I feel bad for Amy, the real teacher.  She is actually a teacher by trade so this comes second hand to her.  I think she thought she was going to get some help with me this year.  Boy did she place her bets wrong.

I spend so much time explaining to 8 year-olds things about Ryan they don’t really care to know but I think helps.

“He likes to hide under tables, isn’t he silly?”  I say in a funny voice to one of the girls who is kneeling down looking at Ryan with a puzzled look on her face.

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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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#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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