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Choices

There are seemingly mundane things I plan, coordinate, and perseverate on, like getting my carpets cleaned. I revel in anything that improves the cleanliness of my house.   But something about clean floors is a downright religious moment for me. I come by that mania rightly–my aunts too had that obsession. I remember watching my aunt clean and re-clean her kitchen floor because it was streaky and felt sticky. So glad that trait came down to me. But back to my impending carpet cleaning: my random-OCD acted up and suddenly every inch of carpet upstairs had to be cleaned. I moved everything I could physically muster, off the carpets and into the bathrooms; then enlisted Dan to help me move the heavier things, like chairs and side tables.   I decided as long as the cleaner was here, perhaps he could clean the rugs downstairs too. Oh heavenly clean bliss was about to come my way.

Obviously what follows is, well, wet carpets and rugs.   Our wonderful carpet guy offered to leave his industrial fans to dry my rugs. I was thrilled! It’s the little things remember.

However, when my very routine son comes home and the house is in disarray, all my grand plans float away like smoke. My idea for blocking the stairs with a kitchen chair (so the dog won’t put his yucky paws on my clean carpet) and leaving the shuddering fans to dry the rugs overnight—were about to cause havoc.

At first, I thought priming Ryan would make it go smoothly. I explained the carpets were wet and things had to stay off them, like toys and dog feet. He seemed okay and I had hope it would all be fine-until we got home and he discovered the chair out of place and the raucous fans. Plus, all his toys in the family room had been moved from the distinct places he had put them.

As I started mindlessly sweeping the dog hair clusters the fans had blown from under the couch, I see Ryan making frantic trips back and forth to his toy closet putting toy animals away. I had to stop and concentrate over the din of the fans to realize he was bordering on tears.

How could I have been so caught up in the glory of fresh carpets that I overlooked how it would make it feel? This isn’t my first go round at dealing with change and Ryan–so don’t think me insensitive.  It’s the progress he has made; he rolls with things so much easier than when he was younger. He transitions to changes in plans with hardly ever a batting of his eye. He can tell me verbally when he’s getting upset. But today I’m not sure planning or priming would have helped. It was too loud and too many things out of place. The one thing he finds peace in is coming home to his house with all his stuff where he left it.  It shouldn’t have been a surprise.

I should have watched for his reaction as we walked in the door to the noise and the displacement of furniture. If I could have heard his gasps as we walked in the door, I would have stopped. But, I was deafened by the noise and caught up in the continual job of cleaning. It’s hard to stop once you start.

As I stood there with the broom and a pile of dog hair and watched his disturbed face, I knew I had a choice. I could stop his unease very simply. Though I wanted those rugs dry as quickly as possible, I realized it wasn’t worth it to stress him out. They are just rugs and will probably dry on their own overnight.  And I’ll just have to watch the mongrel dog to make sure he didn’t go up the stairs with his messy self.

Fans were turned off and put aside. The chair was put back at the dining table and I saw a visible change in him. He asked if he could put on a movie and then carefully began placing his toys where they belong. Peace returned.

I sat down to ruminate on my thoughts of choices I make for each of my children.  Simple thins, like how I choose to make their breakfast and lunch every morning (Dan helps too); how I choose to take and pick them up from school; how I choose special treats at the store; how I choose to spend a Friday night with them watching a movie; how I choose their happiness over mine and would everyday.  It’s worth every offering, even my beloved clean carpets to keep them happy.  I will forgo my silly cleanly pleasures–I will forgo anything for them.  And I will do this until I no longer can.

That’s when I heard the dog retching about to throw up…

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Unique Issues

I’ve spent this past week immersed in retail sales. Not for a major store, but running a middle school book fair.  And “running” is a good way of putting it.  I hustled from place to place all week.  All in the name of books.  My weakness.  How could I not “run” the book fair?  Since books have run me for a long time now.  Maybe I’m getting older or just more reflective, because I have chaired this committee in past years, but this year I learned something I hadn’t keyed into before.

Aside from the “unwashed public” of teenagers and a few parents, I spent the majority of the time in the company of other moms chatting and sharing. And I realized something: each of us and our children have some type of special need.  And not ‘special’ in the terms I have grown accustomed to in the “disabled” world.  All of us have difficulties, failures, weaknesses and pain that should be attended to in a unique way.

I have written in past blogs about the words “special needs” and how much I loathe them for the negative connotation it brings out in my mind; well really for the plain fact Ryan has that label. However, I ‘m hoping my experience this week will allow me to stop hating that definition (as much) going forward.  These moms reminded me that we all do whatever it takes for our children and family.  Sacrifices: financial and emotional and all that we do as ‘mom’ to keep our families propelled forward and happy.

I heard stories from the mom who has to worry about her aging mom, or the mom who has to deal with her son’s chronic lung issues (and a cancer survivor herself), or the mom who lost her son, or witnessing the mom of a special needs child. (Who handled her child so differently than me, but that is another topic.) Then I heard about the “typical” kids who too have struggles of their own like Dyslexia, and ADD.  Or even as simple as kids who are poor planners just suffer from plain ol’ forgetfulness.  Every mom I spoke to is juggling and spinning plates, just like me.  We all are fighting different types of battles to get to the same end: making sure everyone has their needs met.

So, I’m starting with me and going to change the perception of what ‘special needs’ really means; I will try to recognize that all of us and our kids have some issue that we need to handle in a distinctive manner.  Then, maybe I could get society to not think of Ryan as singled out with his “special needs” but thinking he has his own “unique issues”; just like everybody else. That way my “special needs” guy isn’t that special after all.  And I like that. A lot.

 

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#12

***

The first session is about to begin; I am completely panicked, jittery and my heart is thumping a quick beat in my chest.   I try to relax and calm myself down but part I am still not sure this will work.  I want this to be the ticket.  Could it be this easy? Could this be the trick to helping him?

I recall how upset our former speech pathologist was when I told her we were going to use Dr. Hunter.  Said she didn’t agree with the theories of the therapy.   Even though I get the gist of the ideals of the program, and I know it involves many different “interventions” I am still nervous.   Applied Behavior Analysis-(ABA) entails evaluating behavior through many steps and using specific interventions to change or alter behavior—that’s what I read, anyway.

What I can’t stop worrying about is how they are going to do it.  Dr. Hunter told me they may have to physically restrain him.   But they won’t harm him—“it’s to keep him safe from himself”.  But that’s my baby, how can I not worry?

Just changing his clothes is a workout.  Holding him still and getting clothes on and off: I like to call it my ‘wrestling an alligator’ session…. The bottom line is, he can’t stand to be changed. Change…Wow…that was an interesting-very literal thought.  And I remind myself that is why I am doing this.  Going out on a limb, launching into something I know so little about despite my efforts to understand, is for him.  To help him…

The knock at the door rouses me from my thoughts.  Domingo, our dog, jolts up with his ferocious bark.  After his initial joggle from the noise, Ryan returns to his milk—he’s used to it.  Domingo is relentless when someone comes to the door, so I have to push all 100 pounds of him into the garage, while balancing Ryan on my hip.

“I’m coming!” I yell over the din of the barking. I open the door to see shiny faced DJ smiling. “Who needs a doorbell? We never have to guess if someone is here.” I say trying to sound funny.  DJ continues to smile at Ryan ignoring my funny.

“Hey buddy.” He says to Ryan.  Ryan studies him for a second and turns away.

“Come on in.” I say. “Do you want me to take him up or do you want to…I can do it, or are you supposed t–I’m just not sure what the protocol is–it doesn’t matter–whatever you think is best…”  I look at him for a second and realize what an idiot I must look like.

“You can bring him up, it’s fine.” He says slowly and kindly.  Again with that smile.

“O.k.” I say out of breath as I jog up the stairs.  I suddenly want to hurry so I can watch—on the video monitor.  Man my sarcasm has got to take a rest.

I carry Ryan into his room and try to put him down.  He instantly starts crying and won’t let go of my neck.

“It’s o.k. buddy.” DJ says, “Mom is going downstairs.”

Ryan begins to scream and I just stare down at him.  I really don’t know what I’m supposed to do right now.  Even though I want to hug him and tell him its o.k, I turn away from every motherly instinct I have, remove his hands, practically push him away and rush out of the room.  I close the gate quickly with a huge lump in my throat and refuse to look back at his sad face.

His screams follow me down the hall.

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#9

Again, 500 words isn’t going to work on this episode.  I didn’t want to break up the introductions to Ryan’s team.  If you haven’t guessed, these aren’t real names.  Thank you for reading and please keep sending it on.

*

 “Um, I guess we should introduce ourselves.  My name is Brie,” says the statuesque, blonde, beautiful woman.  “Brie Lovegood.”  Lovegood? Seriously? Brie has no make-up on, but is stunning; her features are doll-like.  Her hair cascades down her shoulders to her back and she looks like she’s just come from the beach. I feel a womanly-jealousy for her beauty, yet her warmth makes her more breathtaking.  I have been pre-warned about how beautiful she is, and yes, she was a model.  I have also been told that she is the best of Dr. Hunter’s therapists.  “Dont let her laid back way of speaking fool you.  She is so intelligent and naturally gifted with autistic children.  So, she gave up modeling to help kids with autism?  The reality of that is so amazing it makes me feel so small.

“Hi Brie.” I say quietly and try not to stare at her.  She turns to her left to signal the next introduction.

“Oh, um, I’m Adam Berman.” Adam has a hard time looking at me; he seems uncomfortable or maybe very shy.   How can he teach my child to maintain eye contact if he cant handle keeping eye contact with me?  Stop. Stop being so negative.  I nod at him.  Dr. Hunter has told me about Adam too.  He is another one of her top therapists.  He has just returned from grad school and Dr. Hunter practically exploded with joy (in her reserved, professional manner) that he was able to work on Ryan’ team.

“I will be Ryan’ team supervisor.  Did Dr. Hunter explain all that already?” I nod and he shifts nervously as he rubs his hands on his jeans and looks quickly to his left at the next victim.

“Hi…Mrs. Chergey, I’m DJ…” his voice squeaks loudly and he clears his throat. ”DJ Sims.” The room grows quiet and everyone is looking at him.

DJ looks, and sounds like he’s just graduated high school.  His skin is shiny and tight like it’s just been washed and it has a hint of dark spots of healing acne.  How old is this kid? I can’t think of what Dr. Hunter has told me about him, I know she did, but it’s lost on me at the moment as I bite my tongue at the all too perfect ‘Peter Brady’ “when it’s time to change” moment.  If Dan had heard it, he would have immediately pointed it out and everyone would have laughed.  That’s what Dan does, he makes even the most brutal, horrific moments in my life funny.  He finds humor in everything.  He’s rubbed off on me over the years, but lately humor has eluded me—I almost don’t have the energy for it.   But it feels good to think of a joke right now, like I’m not the old and tired person I am becoming.

“Hi, DJ.” I say smiling broadly and stifling a laugh. I can’t believe I almost laughed in his face.  I sense a pause as they too are trying not to laugh at DJ.  He looks down and does not “pass the baton” to the next person.

“Guess that leaves me, I’m Lisa Gunther.” Lisa says as she almost glares at Brie.  I can’t blame her.  Lisa is very pretty too (are there no ugly women in this business?) but is at least a half foot shorter than Brie.  She seems less enthusiastic to be here than the rest, but I know that Dr. Hunter knows what she’s doing.

“Hey, Lisa.  It’s nice to meet you all.  Dr. Hunter told me she put her best on Ryan’s team…” They smile and nod back at me.  “Well, thanks for coming today.  This is all…new…to us, so we look forward to…learning how…to…” I think to myself bitterly how to deal with my son…I need strangers to teach me how to deal with my son.  I say instead. “Well…to getting started.”

They all still smile at me and I begin to rub my hands on my legs. What is wrong with me?

Dr. Hunter returns and relieves us all of our uncomfortable moment.   Dan comes in carrying Ryan and his frayed blue and yellow quilt.  My auntie made it for him when he was born.  It goes everywhere with him.  I have to literally pry in from his hands at night to wash it.  The group on the couch stays seated.  He looks at them, turns away and begins to whine.

“Hi.” Dan says a little breathless to the crowd while wrestling with Ryan. “I’ll get all the intro’s later.  Where would you like him?”

“Well, after you worked so hard to get him down here, I think he should go back up.  Sorry. ” Dr. Hunter answers.   “Brie, Adam, you two want to start? And DJ and Lisa can wait outside his room in the hall?  I’ll be there in a minute so we can discuss his programming.”

Programming? Is he a computer?

Dr. Hunter turns to me.  “Do you have a camera to take our pictures? That is how you will make his schedule in the beginning is with pictures.  If you can show him who’s coming he will be more at ease.”

“Sure I said, can we do it after we are done?” I ask.  She nods yes.

Dan tries to hand over Ryan, but he squirms out of his arms and runs to me and turns around.  I lean down to encircle my arms around him he presses his back to me and give him a quick squeeze as if to tell him It’s okay.  I let go and grab his hand as Brie walks to me.  She squats down slowly to look at Ryan.  She says softly as she looks him in the eye.

“Hey Ryan, let’s go upstairs. Hold my hand. O.k.?”

He looks at her quickly and I feel my mouth fall open and I stare as he puts his tiny hand in hers.  I slowly let go of his hand and we all watch them walk away in silence. I don’t know what I feel, but it’s almost like relief with a huge helping of sadness.

It is truly gut wrenching, that I am literally handing my son over.

 

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Installation #7

Week number three of the blog…it’s not setting the world on fire but we are growing slowly.  I really appreciate you reading and forwarding the link.  Don’t forget to subscribe. Again, I thank you.

*

“We will start with a team meeting.  I want you to meet all the therapists at one time.  After that, his sessions will begin, and then each month we will have a team meeting.  I already have a team picked out, and I’ve given Ryan my best.”   She smiles brightly and I realize not only is she one of the most articulate people I have ever met, she is just as beautiful, especially when she smiles.  It starts at her mouth and almost glows like fire up her whole face.

“Who are they…when does that start and when are the team meetings…?” I stumble over my many questions as I get the feeling my life is no longer my own, and will become one scheduling nightmare. How will I keep it all straight?

“I will have my office manager let you know the schedule. I know it sounds overwhelming right now, but soon it will be part of your day as well as his.  The therapists become part of the family.”  She says with that bright smile.

“Believe it or not, it will come to a point when he will look forward to it, and so will you.  Our families love having us, so they can use the time to do the dishes, take a shower, get bills paid, have a break.” Her smile grows and she winks at me.  It’s not a cheesy wink but a “no worries, it’s all handled” gesture.

The thought of actually getting something accomplished while the kids are home is a welcome thought, but the idea of some stranger spending time in my son’s room with him feels odd.  It goes against everything you’ve taught your children.  Dont talk to strangers…well he can’t do that, so one for him.  But the ‘having a stranger in his room with him’ goes beyond all parental reasoning.  I don’t even know how to process it right now.

“There is a lot we will be discussing over the next few months, but for right now, just know that you are the most important people on Ryan’s team.  Taking part in therapy and following through with what we are working on will give him the most success.  He really has such good indicators…” she pauses here like she is going to say more, and only smiles.  She changes the topic, but I let myself indulge in the idea that she would have finished the sentence with “being normal”.  He has such good indicators of beingNormal.  I repeat this in my head over and over.   I don’t know if she realizes what a gift she has just given me.

I just want him to be normal.  I know it isn’t fair to think this, but it’s where my mind goes these days.

We spend another fifteen minutes going over who the therapists are, their backgrounds, and the rules for when they are here.  As she is leaving, she purposefully steps in front of the TV and waits for him to look at her.  She says goodbye and he doesn’t yell this time, but he isn’t overly enthusiastic that she has interrupted his show—indicated by his quick whine.  She smiles brightly at him, walks briskly to the door and turns to us.

“I know it’s hard to see now, but believe me, in six months, he won’t be the same kid.” She smiles again and shakes our hands.  “Nice to see you, hang in there.”

We watch her walk to her car and I think…then who will he be?

 

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Installation #5

I hope you are able to understand the story just by these snipets.  Please enter your email on the right under “subscribe” so I can see how many of you are interested and what you think.  Thank you.

AMERICAN SOCIETY OF AUTISM YEARLY CONFERENCE

The banner over the speaker’s dais states in bold colors.  It has three primary colored puzzle pieces on it.  One piece is missing.  A void as if waiting for someone to put the last piece in.  That’s how my heart feels, like it’s lost a piece.  And now is waiting…

The room is four large ball rooms opened up as one.  Hundreds of chairs are lined up behind skinny tables.  People are coming in by the hoards and finding chairs.  How many people come to this? I wonder.  I open up my notebook to see the topic of the first speaker.  Words jump out at me and I recognize some of them from meeting with the doctor…ABA…discrete trial training…IEP.  I see Dan studying the notebook too with a puzzled look.  I have been trapped in my own grief for weeks, and I don’t know how he is feeling.  He has shown a brave face, but we haven’t had time to digest it all yet.  I touch his arm and he smiles quickly at me.  The microphone squeals lightly and a tall man in a ‘professor-looking’ jacket (with elbow patches and all) tries to get our attention.

“Excuse me everyone…hi…Ladies and gentlemen, welcome to the ASA’s yearly conference.  We are so happy you could make it and have some great presenters here today. If you could all find a seat so we could get started…now I would first like to do something different.  Could I have all the dad’s here today, stand up?”

I look at Dan confused and he looks puzzled too.  We see men beginning to stand up all around us.  Dan shrugs his shoulders and rises.

“Can we give them a hand?”  Applause.  “I want to recognize them all for being here; I know as a father of an autistic child, it was hard for me to get a grip on what was happening.  But I got involved…  And you being here today shows you are involved and it can only help your child in the long run.”  Loud applause. “I can tell you two years ago, there were less than half the dad’s here.  Be proud of yourselves.”  More applause.  “You are the reason your child will be successful.”

Dan sits down half smiling and I feel something spark in my chest.  I have always been proud of him and knew he was a great dad, but that moment brought me to a new reality.

Were there dads out there who didnt accept their children because of their disability?  Were there dads who didnt take part because they dont know how?  Fear grips me again.

Great. Another fear to add to my repertoire. Will he always be involved?

Then I look at him, really look at him—as if for the first time.  As big and as strong as he looks, he’s molten love underneath.  From the first day we found out about Ryan, he has been marching forward looking for ways to fight this.  I had been the “bull dog” detective (according to him) getting to the bottom of it.  But once I heard those words, I wilted inside.  I have stood next to him with my determined mask on, but inside feeling so lost and sad.  What would I have done if he rejected Ryan and I had to do this alone?  I shudder and hold back tears.  I have such a feeling of relief for at least one aspect of this battle.  For now, I know, well pray, he won’t give up on Ryan…or me.

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