Teacher Professor

April 12, 2012

Underneath the Water- Or Why I Don’t Blog Like I Used To

Filed under: ADHD,Autism,Home Things,Tourette's Syndrome,Uncategorized — Teacher Professor @ 11:39 am

Ray’s guidance counselor described it perfectly the other day as we were determining the need for a 504 Plan for him.  “If you’re working this hard to keep everything ok, perhaps we should document it.”

There’s a phrase that goes something like this “Be like the duck- Calm on the surface and paddling like hell underneath“.  Yes.  And oh yes.

Here’s the thing- things ARE “ok”.  Ray is getting Bs in school,he’s got a few really good friends, and life is not a series of dramatic challenges.  And we’re working really, really, really hard to manage the environment so that he’s doing all right.  When I describe how things are, I get a lot of “Oh, that’s him being 9!… Sounds like he’s being a boy!… Ease up on him, Mom!…”

I have come to realize that his anxiety disorder has created one in me.  Every time we leave the house- to go to the movies, to go to eat, to go to the beach, it’s resistance.  He doesn’t want to leave the house.  Ever.  If we force him, however, he goes.  He doesn’t throw a screaming, hysterical fit.  What he does do is get mean and ugly and “irritable”.  But he goes.  He either relaxes and we have a good time or he doesn’t, and manages to ruin it with his “hmphing”s and growlings and nasty comments.  Until the next time we leave the house again and it never gets easier.  Never.  My husband and I have discussions “Is this worth the fight we’re going to have?”  Every single time, it’s a fight.  And the simplest of errands becomes a battle of wills.

We pick our battles carefully, because it’s important to be consistent.  It’s important to win the important ones, “Yes, you have to go to your cousin’s wedding.. yes, you have to eat three pieces of spinach” and give choices in the unimportant ones, “Do you want to go see ‘The Return of the Titans’?… Do you want spaghetti or tacos tonight?”.  And then there are the “Is this worth the scene it’s going to cause?” issues.  Should we force him to do a sport?  Should we ignore the incessant dribbling basketball in the house?  Should we provide incentives for him to sleep in his room when he wants to sleep in the living room or at the door to our room?  Should we …?  Every thing we do, we have to plan out with the forethought of a general- “What choices can we provide?  Is this worth the battle it’s going to be?  What is causing this resistance and how do we work with this?”  We have to steel ourselves to being stronger and more positive than he is going to be.  Every time.  Except when he’s not.  And we’re tired.  We’re so tired.

The thing that gets me is that these issues are not unique to Ray.  I know 9-year boys.  I taught 9 and 10-year old boys for years.  They are contrary, wonderful, on-the-brink-of-teenagers-but still rational and snuggly.  It’s not the types of challenges- it’s the intensity of challenge that he poses.  I often feel like a whiny, paranoid parent, because these are not unusual issues.  I constantly have to judge- “Is this MY problem or Ray’s problem?”

But then there are the “Things are just not right” moments.  Today, as I took him to the doctor for a bronchitis diagnosis, and I watched him with his arms wrapped completely around himself, rocking with anxiety, avoiding eye contact, and growling at me when the doctor or I tried to talk to him, my heart broke a little bit, but I feel validated that “No, it’s not just me”.  There’s a strong-willed child, and then, there’s… this.  When things are not “right”, he retreats into his own area of misery, rocking and growling and losing his language.  And getting things right is constant juggling, balancing, paddling like hell.

I haven’t been blogging about this because I’ve been very carefully constructing his environment and planning the battles.  He’s hanging in there.  He’s getting Bs because he gets 100s when things are well-balanced, or he gets 20s when something is off.  He has a few friends and their families tell me how sweet and nice he is.  He’s polite.  Teachers tell me they don’t see any real behavior problems other than he’s a little active.  He’s not aggressive and has never hurt himself, anyone or anything.  But I haven’t been able to blog because it feels like it would be a continual litany of “This is so hard… this is so hard… this is so hard…” and I can’t go there.  I can’t let myself sink into the morass of sadness and frustration and depression that lurks- under the surface of “Everything’s ok”.

But I’m tired after this year of keeping things as even as possible, as managed as possible and as positive as I can be.

To hear the guidance counselor support the work that we’ve been doing felt good.  I cried when I heard someone recognize that although things look calm on the surface, we’re paddling like hell underneath.

January 24, 2012

Fighting Fog

Filed under: Bipolar,Gifted,Home Things,Medication issues,Tourette's Syndrome — Teacher Professor @ 12:14 am

This evening, holding my son- who has been quiet and subdued all evening.  

Me: What’s wrong, Ray?

silence.

Me: Anything you want to talk about?

silence- the silence gets to me.  It’s not a loaded silence.  Just a still.  

Ray: What do you want to talk about?

Me: Any words in your head?

Ray: No

Me: Any feelings in your head?

Ray: No

silence

Me: If you were a color, what color would you be?

Ray: Gray

Me: If you were a shape, what shape would you be?

Ray: A sphere

Me: If you were weather, what kind of weather would you be?

Ray: A cloud

Me: A stormy cloud, a gray cloud, or a big puffy cloud?

Ray: A rain cloud.

Silence. 

Me: What does the rain cloud want to do?  Feel better?  Get some sleep?  Feel happy?

Ray: You know.

***************

The problem is that I don’t know.  I’m never quite sure what son I’m going to have on a day-to-day basis: Do we get the angry, resistant, black mood Ray; the quiet, not-really-there Ray; the run-around and talk a mile-a-minute Ray; the anxious and wring his hands Ray, the focused scholar and look-how-smart-I-am Ray?  While all kids go through “moods”, his are intense.  Even when he’s gray.

Jess, from Diary of a Mom, talks about fighting “dragons with rubber swords”.  I feel like I’m fighting fog with pointed sticks.  We have the “stick” of medication, which nibbles around the edges of issues– creating other issues in the wake.   We have the pointed stick of therapy, in which he refuses to engage- or worse, pretends to be completely normal (a play therapist told us that it was our problem, not his when he was 4).  We have safety and structure in our house, which leads to agoraphobia.  We sortof have labels: Anxiety Disorder, mild Tourette’s, mild giftedness, not quite autism, not quite bipolar, not schizophrenia. In dark times, James and I have to remind each other- he has special needs.  And just because there’s no good label doesn’t mean that the needs aren’t there.

I’m grateful for many things: I’m grateful that he has never tried to hurt himself or anyone or anything.  I’m grateful that he has never talked about not wanting to be here.  I’m grateful that he’s smart and funny and that he can do academics well enough that everyone around him is frustrated that he’s underachieving- but not failing.  I’m grateful that he has a few good friends.  I’m grateful that I have enough background to have consistency, behavior charts, and metaphors to help him.

But I’m terrified.   I feel like I’m keeping him from falling off the edge through pure will- and he’s only 9.  I’m terrified of adolescence.  I’m terrified of his genetics.  I’m terrified of losing my child to alcoholism, to suicide, to a place where he won’t let us help him. I’m terrified to speak possibilities aloud for fear of them coming true.

And I don’t know what to do about the monsters in the fog that never quite reveal themselves enough to fight.  If you can’t see something well enough to fight, it can’t be vanquished.  It just shifts and morphs.

Into the gray.

Ray, I have no idea what to do.  But I’ll do anything to help you.

June 6, 2011

Studying Tourette’s

Filed under: Tourette's Syndrome — Teacher Professor @ 7:46 am

It is clear that Tourette’s is inherited.  My father has Tourette’s; my brother had Tourette’s.  My husband has Tourette’s (undiagnosed), and my son has Tourette’s (diagnosed).  Gee- you think there’s an inherited quality to it?  Gee- you think that somehow I’m surrounded by men with Tourette’s?

But there’s two problems with declaring it to be an inherited syndrome:

  1. Tourette’s is so intertwined with:
    • Autism
    • Bipolar disorder
    • Obsessive compulsive disorder (OCD)
    • Attention Deficit Disorder (ADHD)
    • Oppositional Defiant Disorder (ODD)
    • Generalized Anxiety Disorder- Not Otherwise Specified (GAD-NOS),
    • Even dysgraphia,  and a whole host of other initials, that it’s hard to separate out what is a Tourette’s tic, what is an autism tic, what is a vocal tic versus impulsive speech, what is a repetitive behavior versus a tic, and what is just little boy anxiety.
  2. There are no good genetic studies that can pinpoint that there- right there in the DNA strand- is where Tourette’s lives.

But the Tourette Syndrome Association International Consortium for Genetics (TSAICG- now that’s an acronym that rolls trippingly off the tongue) is trying to work on both issues.  They have identified some potential chromosomes and need volunteers to contribute to a study they’re doing.  A study that is sponsored by the National Institute of Health.  A study that requires blood to analyze.A study that is very, very important.  A study where I will never see the direct results for my child, but one that I know that can impact future medications, future therapy and future understanding of this… this… whatever this “Tourette’s” is.

See that number on the right hand side?  One of those numbers is my son, I’m proud to say.  And I’m most proud of why he agreed.

  • Setting– In Ray’s bed as I’m reading to him at bedtime.  Normally, a time when we can talk and he’s not so distracted by… everything.
  • Me- Ray, there’s a study that wants to look at what causes Tourette’s!  And you’re invited.  They have my email in their systems and they emailed me today and invited you to participate (I didn’t tell him about the online survey I had already filled out that yup- found that he’s a candidate)
  • Ray- Oh.
  • Me- Yea.  They need your permission to do it.  It means getting your blood drawn, but they’re going to analyze your blood and look at the teeny tiny parts in your blood called DNA and learn all kinds of things about Tourette’s.  Isn’t that cool?!
  • Ray- NO WAY!
  • Me- And they’re going to give you a $10 gift certificate to Target when you’re done! (It’s really $5, but in the name of science, we’ll contribute $5 ourselves)
  • Ray- No. (Starting to shut down now)
  • Me- You know, sweetie, these results aren’t going to help you.  It’s going to take them a long time to find out the information they need to help people with Tourette’s.  But it might help your child. 
  • Ray- I’m not having children. (Contrary kid)
  • Me- Certainly that’s your choice.  But the results might help Elizabeth’s children.  Or even their children.  Just imagine!  Your blood could actually be part of a study that helps so many children.   But they can’t take it without your permission.  They already have my permission- but they have to have yours.  You have to agree to it.  And it’s ok if you don’t.  I can see where this might be scary.
  • Ray- no response- and he got down from the bed to get a drink of water.

End of conversation- or so I thought.

  • Setting– early the next morning
  • Elizabeth- HEY!  How come Ray gets to get a Target gift card for some blood of his?  I want a Target gift card!

I’m not sure if it was sibling rivalry, the opportunity to get money towards a DSi game at Target, or the opportunity to help his sister’s future children- but he talked to the researchers from Children’s Hospital in Boston and agreed to help.  They’ve sent us the tubes for us to mail, and next week, his pediatrician will be drawing his blood to FedEx to Boston.  He’s nervous. He’s more than a little anxious about it.  But he knows that he’s helping.

I encourage anyone who has Tourette’s, who knows someone with Tourette’s, who finds this blog through Googling Tourette’s, to participate in this study.

Someday, you might help your sister’s children, too.

February 5, 2011

Medication Meditation

Filed under: ADHD,Autism,Bipolar,Exceptionality issues,Medication issues,Tourette's Syndrome — Teacher Professor @ 3:33 pm

In the midst of my whining about my week, I got an email that reminded me that cars and cats notwithstanding, there are other roads and other issues that are not just small piranha bites, but great big Great White Shark weeks.

Let’s-call-her “Abbie” asked me about our decision to put Ray on medication.  She’s being pressured by her doctor and doesn’t know what to do.

Abbie, we faced the same decision point.  We agonized, we worried, and we knew that any direction we went would be unknown, scary and would make someone irritated.  Someone who would get in our face and say “How could you… I told you… Don’t you think…?”  There were several things we used to close out the many, many voices around us and to keep focused.

1)

The first thing we kept in mind was Ray’s history.  Ray was BORN fussy- unhappy and anxious and not eating.  He was only comforted in my arms as a baby.  He was also born bright and verbal and funny, but with an “edge” to him.  There’s something about his face that I recognize now in other children’s- his face is tight and sharp around his cheeks, and his eyes are wide-open and active.  I’ve seen it in my friend Linda’s son; I’ve seen it on the faces of other children I work with.  Something about the eyes… a little too alert and an awful lot of anxious thinking.

The other thing that I held on to was that I can never, never predict Ray’s moods. Some of the time he’s wonderful- he’s funny and he’s creative and he’s loving.  I like to think of these times as the “real” Ray- the person he is  until the neurological storms in his brain cloud his thinking, hijacks his reactions.  These storms appear to have little relationship to events around him- I can’t find the cause and effect.  I can be firm and we have a lousy day.  I can be stressed and frazzled, and he’s fine.  Or the other way around.

We are always surprised when Ray’s issues come up- you would think that we would be used to this by now.  But the up-and-down is so hard.  We spend an awful lot of time calming him down; an awful lot of time being consistent, consistent, consistent- until we collapse from our own exhaustion and our own loss of control. We’ve tried monitoring his diet- does that trigger things?  We’ve tried keeping things calm.  Sometimes these work- sometimes they don’t.  Of course, stress triggers it- that we know.  But beyond that… ? We always feel if we could find the “key” that triggers him, we would solve this.  But we can’t.

Ray’s Tourette’s tics are the least of his issues.  When he was spitting- well, yes, that was gross.  That made him different.  But his throat-clearing, the shuffling of his feet at doorway edges, the tapping of his fingers- those get lost in the midst of his overall movements.  I know he moves on purpose to hide his tics- to take the edge off of them.  He’s constantly shifting.  And we can live with that.

But what hurts my heart so much is when he can’t follow a conversation- when he asks a question, and when I’m two words into an explanation, he says “Never mind!” and wanders away from me.  It hurts when homework can be so, so hard- not because he doesn’t know it, but because he can’t pay attention long enough to do it.  We call those the “butterfly moments” because when he’s trying to pay attention to you, he’s really with you, but otherwise, he’s off and drifting.

Unless he’s anxious, which is when he gets fixated and oppositional.  Lately, he’s been fixated on football.  It’s expanded beyond UGA football, to hating Auburn, to wanting the Green Bay Packers to win the Super Bowl- even though he’s never been to Green Bay, nor have any affiliation with them.  But because I’m rooting for the Steelers, because Emily was cheering on Auburn, he has to take the other side.  It’s funny, and it’s annoying because everything, everything becomes a fight.

“Who do you want to win, Mommy?”  “Ok, Ray, I’ll take the Steelers because we used to live near Pittsburgh.”  “Well, I think they’re awful!  I want the Green Bay Packers!”  It would be funny if it weren’t my own child with whom I can’t even share a fan moment.

So- that’s Ray… a long history of erratic, unhappy behavior that has no clear-cut label.  A recipe of a little autism, a little Tourette’s, a little ADHD, and a little ODD.  Some people call these “manufactured labels for bad parenting”.  Well, I gotta tell you, they’ve not seen my son when he’s coherent and when he’s clouded by neurological storms.  I can see the differences; and I can assure you that there is a clear-cut biology involved here.

2)

Which led us to the latest, newest doctor who recommended medication.  “You wouldn’t withhold insulin from a diabetes patient.  You wouldn’t say he should be able to control his heart if he needed heart medication,” she said to us. “Well, his brain isn’t making enough of the stuff to keep him alert.  Being this way is not his choice- he’s reacting to the brain chemistry in his head.  It’s already there.  It’s like telling someone who has had too much to drink that they aren’t really drunk- it’s just an excuse.  No, they’re reacting to the mixture of chemicals in their brain.  But their chemicals wear off.  Ray’s doesn’t.  And so we have to help him get the balance right.  If we don’t help him, there are lots of studies that find that these kids self-medicate. And they don’t pick things like coffee- they find that they like themselves better on cocaine and meth.  I’m not telling you your kid is going to become a drug addict.  But we do know that kids who are not helped through legal means are much more likely to help themselves through illegal means.”

I gotta tell you that we did not like her approach.  She was scaring us and she was more than a wee bit arrogant.

But she was right.  I did my own research- and to quote from Essortment, “Illegal drugs are used to obtain a “high” feeling or to escape from reality. Ritalin works to improve one’s awareness and to improve their attention span and concentration. The two drugs serve two completely opposite purposes. Many counselors have claimed that children that struggle with ADHD, without the help of Ritalin or other prescribed medications, may be more likely to use illegal drugs as a way to help them cope with the stress of ADHD.”  The use of meth and cocaine are only barely related to the use of stimulant medication- they’re much more related to demographics of poverty and parental upheaval and school failure. And we’re working with the teachers, with tutors and with my own knowledge to make sure that Ray does not fail.

There are other sides that claim that drugs are the easy way out- that I’m teaching my son that life gets easier with a pill and not from hard work- that I’m looking for an easy fix for… once again, bad parenting.

And once again, I know- I KNOW that while I may get tired and we are certainly responsible for aiding some of the misbehaviors when we get tired and irritable, most of Ray’s issues are biological.  We have a daughter who does not have these same issues.  I have taught hundreds of children- some with issues, some without.  I come from a family with a history of Tourette’s and issues- a family that I did not grow up around.   There is a biological root to some of this.

And so, we looked at medication.

3)

The thing we held on to was that medication was a choice that we could always unmake.  If a particular dose, a particular prescription didn’t work, or we didn’t like what it was doing, then we could take him off of it.  No harm, no foul was the agreement.  We would follow our parental instincts and snatch him off of it if it wasn’t right for him.

And  I have to say… medication has made a world of difference for us.  It hasn’t changed Ray’s basic “Ray-ness”- it’s just taken the edge off.  I’m less worried about him.  I can see him building up successes to keep him going.  I don’t cry all the time anymore.  We still struggle with him.  That “in-between” time between when his Daytrana- which is a stimulant- and he goes to bed with his Clonodine is… challenging.  But we have more good days than bad.  The bad days- wow… they’re really bad.  The good days- well, they’re sweet.

The Daytrana makes him more aware- and so, his tics are not necessarily worse, but he is aware of them more.  The Clonodine seems to have alleviated some of the more significant tics- the overt ones.  The ones he has now can be hidden easier.  He’s more focused in his anxiety now- it’s not as free-floating.  He can sometimes describe now what he’s anxious about- and that insight has been marvelous because we can help him when he can share.  And sometimes, he can’t.  But inch by inch, we’re seeing progress.  And regression.  But mostly progress.

My goal with medication is to teach him what those neurological synapses feel like- so that he can find his way back to them when he needs to have success.  If yoga or meditation can help him find his way as well, then I’ll try those too- but he’s still young.  That level of concentration is something to grow into- and he can’t even start up that hill until he learns what it feels like.

But I was bound and determined that I was not going to let my issues and worries with medication get in the way of what my son needed.  Could we have done this without medication?  Possibly?  But at what cost?  I’ve read up on nutritional means- but it’s hard enough getting him to eat anything, much less “good for you” stuff.  I get vitamin supplements into him by pure will and out-stubbornning him.  He DOES eat a “balanced” diet- mostly.  But I decided that I was not the food police because I couldn’t control that much of an 8-year’s life.  If I were to control his eating to that degree, he would not learn control of himself in other ways.  And so, we teach good nutrition. But we do not control his every choice.  I give him freedom within structure.  And medication helps us with that.

I also had to keep in mind the needs of his sister- who has her own issues.  I have to be there for her.  And let’s not forget that James and I need a break with just each other sometimes.  We have to be there for our friends and our family as well.  And let’s not forget our pets.  Ray is not an isolated set of issues- he’s part of a system.

****************

*I* know that I am not drugging my kid into submission.  Heck, I can still barely keep things stable as it is.  But I do know that 1) this is biological, and biological causes require biological fixes- and environmental changes that can create biological change, 2) we made the best choice for Ray and for our entire family at the time, 3) we make a new choice every single morning, and 4) as he ages, the issues will change, and our solutions to them may change.

And the last thing I know is that we made this choice very, very carefully with a lot of informed thought.  I would NEVER tell another parent what to do- they have to make their own choices very, very carefully-keeping in mind what is best for their child and what is best for their family. 

January 20, 2011

The Cracked Pot

Filed under: Exceptionality issues,OCD,Tourette's Syndrome — Teacher Professor @ 11:16 am

There’s an old legend, told in many different cultures, about the cracked pot.

A water bearer has two pots that he uses to carry water to his master’s house- one perfect that carries a full load and one with a crack in it that leaks, so that by the time they get back up to the house, there is only half a load of water left.  The cracked one is ashamed about how he is flawed and cannot do what is asked of him.  One day, he shares his shame with the water bearer who asks the pot to pay attention to the world around him the next time they are to haul water.

On the way down to the river, the pot, empty like his partner on the other side of the water bearer’s shoulder, notices nothing- a worn path and a few weeds.  But on the way back, as the water bearer turns around and hauls water back up to the house, the pot notices beautiful wildflowers on that side of the path.

When he asked the water bearer what it meant, the water bearer said “I noticed long ago that you were cracked and could not carry your full load of water.  so, I planted wildflowers along your side of the path.  Every day, you have been watering those flowers that I then pick and bring to the master.  Without you, he would not have had that beauty in his life.”

I heard this story today at yoga- after a particularly horrible and trying day with Ray.  A day in which I lost my temper at him; a day where I wondered if we’ve really made an progress at all.  A day where I felt very much like that pot that was so cracked and frayed that I’m not sure there’s any water left in me at all.  I certainly don’t feel like I am able to do the job that I was given.

It hurts so much when Ray is “irritable”- a really vague word that doesn’t even begin to capture his oppositional behavior that is primarily focused at me.  When I ask “How was your day?” and he yells “WHAT DO YOU CARE?!”  “When I say “Actually, I do.  I’d like to hear about it,” and he grunts and turns his back on me.  When I ask him to close the cabinets and he growls at me, dropping something out of the cabinet on the floor as he closes them and leaving it there.  When he informs me, in a snarly tone,  that he’s going to go outside to play with his friend, and I inform him that no, he’s going to show me his homework before he goes anywhere, and he throws his assignment book at me.  It hurts when I inform him that he’s not going to play with his friend until he goes to time out and apologizes to me and when I ask him to tell me what the poor choice of behavior was, he yells at me “I DON’T KNOW!”  I’m ashamed to say that I shrieked back at him… and placed him forcefully in his room, after ripping his Nintendo DSi from his hands.

Time out was clearly for me, not for him.  When he came out, I asked him to show me his report card that was stapled to his assignment book.  “I DON’T WANT TO!” he yelled at me- clearly, time out didn’t work for him.  I got very clipped and informed him that he was, indeed, going to show me his report card and we would talk about it and he had earned another 10 minutes of time out and every time he was rude to me, he would earn another minute.

By the time we were done, he had “earned” 22 minutes of time out.  He couldn’t tell me why doing well in school was a good thing; he couldn’t tell me what he had done well in; he couldn’t even tell me why he got a lower grade in one subject.  He told me that “All that matters is the CRCT (state test).  Who cares about the report card?”  He growled at me, grunted at me, turned his back on me.  All while I knew that he was hungry- but refused to eat.  All while ticcing, so I know that his Tourette’s was really acting up, so I know that his system is all jangled.  All while refusing to answer any questions, have any discussion.

And get this- his report card?  All A’s with 1 B (in writing).  I told him that I wanted to celebrate with him- that I wanted to tell him how proud I was of him.  But that I couldn’t because of his behavior to me.  That I was happy to see how hard he worked at school, at which he then said “I DON’T WORK HARD.  This is EASY!”  If he’s this way over a good report card, what’s going to happen when he decides he’s done with it all and it’s a bad report card?

Which is why I again lost my cool, informed him that we expect him to work hard, and get good grades and that his behavior was NOT ACCEPTABLE and sent him away for his 22 minutes of time out.  22 minutes where I cried.  22 minutes where I retreated into myself.  22 minutes where I wondered why even “good news” is bad.  After 22 minutes, he came out and then proceeded to “play” (ie. squabble) with Elizabeth, with Emily, with even the cat.  I gave him Ritz crackers, which Emily and Elizabeth gobbled.  I handed him back his DSi, which absorbed him quietly until he overheard Emily and Elizabeth and jumped up to ride bikes with them.  He wasn’t still; he wasn’t contained- he was provoking confrontation.  James came home finally, and I left for yoga and a moment of peace- leaving James with the fallout. 

It was a whole evening of my hating his behavior, hating his Tourette’s, hating his anorexia- fighting with James over letting him eat nothing a jam sandwich while I was at yoga- loving my child, but hating my response to it all.  The peace that I can manage to find in 22 minutes, in yoga, just pours away in the face of his intensity and the confrontations he seeks. 

I don’t know about any flowers along the path, but I sure know that my pot is cracked and that I’m leaking all over the place.

November 18, 2010

What’s Behind Door #3?

Filed under: Autism,Exceptionality issues,Tourette's Syndrome — Teacher Professor @ 10:05 am

This week, someone in my family got invited to apply for two fabulous jobs- all in one day; jobs that she hadn’t been looking to do; jobs that she had perhaps thought about, but never seriously.  But jobs that each pay better, and have more authority and responsibility than hers does now.  She’s not sure she wants to do either of them, but she’s mulling possibilities now; whereas, on Monday morning as she drove in for work, she was mulling the weather.  Now, she’s faced with choices- and with choices, comes some stress.

One of the things that is most frustrating is when you have no choices- when events beyond you are driving what happens next.  To feel powerless in that situation can create anger and helplessness.

But it can be equally daunting to have too many choices.  When multiple pathways open up and present themselves, you can feel frozen and angry and afraid that you’ll make wrong choice.  Too many choices can be as stressful as no choices at all.  It may be even more stressful- but it is certainly a very different sort of stress.  Coupled with the anxiety of the implications of the choices is the realization that if you choose wrong, the only one to blame is yourself.

I’ve seen it so many times- and experienced it.  It does appear that the Universe has a tremendous sense of humor in not providing any options and then providing too many options. When we were going through autism identification for Elizabeth, there were no choices- there was one Early Intervention specialist available and one date available for identification and only one road in front of me.  Her sensory and language issues led to one label of PDD-NOS, which led to one therapist which lead to a coordinated approach of treatment between an Occupational therapist and a speech therapist.  When she “graduated” out of therapy, her ability in school led to one label of gifted.  Elizabeth has always been a sequential child.

This was in stark contrast to my son- where we got choices of which way we wanted to proceed with his issues.  Did we want to go down the nutritional route and address his eating issues?  Did we want to go with the neurologist and address his issues from a Tourette’s perspective?  Did we want to address his anxiety issues?  Did we want to address his speech impediment? His attention difficulties? His sensory issues?  His oppositional defiance? His strong academics, but not strong enough to fit into classic gifted, but perhaps twice-exceptional?  His issues do not fall tidily into one little label.  The help that we seek changes depending on his needs- which means that we get ping-ponged between doctors, between medications, between choices, between doing nothing and doing something… anything.  No wonder my son’s issues are the ones that have me in knots on a regular basis- we have too many choices to deal with, and I’m responsible for which way we go.  Or don’t go.

When Ray is presented with choices, the stress is enough to send him into a very, very dark spot.  He is so afraid of making the wrong choice, that he often can’t make any choice at all.  Even something as simple as “What do you want for dinner?” is enough to send him into a tailspin.  Libraries and stores are terrible places for him- he is overwhelmed with the choices available to him.  But he’s too anxious to give up control, which makes him oppositional.  I have learned to play the Choice Game with him- which has two steps.  The first is to give him two choices.  He will reject them both, because they were choices that I came up with, not him- so they must be rejected.  I provide a third choice- one that I indicate that I’m not crazy about- and he selects from between the three- often the third.  It’s a dance we do- and one that I haven’t mastered  yet, because I keep forgetting to come at him sideways.  Then, once he has decided, he agonizes about what he missed.

I have always hated that “Road not Taken” – when you’re deciding medication, jobs, colleges… etc.- these are all big choices.  Your choice is going to impact your life, others’ lives, and your family’s lives.  It’s that  Making Up Your Mind part that can be so stressful.  Especially when you don’t know everything- especially when you don’t have all the information.  Especially when  you don’t KNOW.  Especially when there might be something else that comes up later- or maybe she makes no choice at all, which is a choice as well.

Luckily, I was raised by a mother who taught me to make a decision carefully- and then stick with it.  That spending time afterwards in a “might have/could have/ should have” state of mind is pointless.  That if you don’t like your choice, you either decide to stay with it, or you decide to change it, but you don’t spend your time dithering- once you’ve made up your mind. 

And so as my family member decides between Option #1, Option #2, she’s wondering if there’s a possible Option #3 coming down the road.  Because once she makes up her mind- she’s heading down that path- and there’s no looking back.

November 10, 2010

True Grit

Filed under: Schools,Tourette's Syndrome — Teacher Professor @ 7:02 am

I was brought to tears last night at the incredible bravery of my son.

He volunteered for, auditioned for, and got a speaking part in his school’s 2nd and 3rd grade song performance for the parents that the wonderful music teacher, Mrs. J, puts on every year.  Last year he thrilled down to his toes as he sang patriotic songs for the  Veteran’s Day sing.  The enjoyment of that memory buoyed him up to speak up when the teacher was asking for volunteers for this year’s “Celebration of Music”.

He came home a month or so ago bursting with pride to tell me about it.  He was Speaker #8 and had three very long sentences that introduced the third song.  He read it a few times and then refused to practice.  “Nah- I got it,” he would brush me off when I suggested that he practice with me.  Two days ago, I finally bribed him to read it through with the lure of cookies- two cookies for 10 times reading it through.  He garbled it, ran through it, and said it correctly maybe twice in those 10 minutes- when he had the paper right in front of him.  He said “wite” for “right”, and “thud” for “Third”.  I have learned not to pressure him, and I hoped that the visual memory would carry him through- that, and I’ve heard that Mrs. J stands off to the side to prompt them.  I gave him his cookies and resigned myself.

Last night, I watched him with my heart in my throat during the first two songs.  It was a crowded auditorium- well over 500 people.  The lights were bright on the stage.  The children filed in and he was on the side, next to his best friend.  He was ticcing- not really obviously, but he was tapping his arm- to the point that it interfered with the salute that they were to do during the second song. He didn’t swing and beebop with the other children- he stood there and wrung his hands.  He didn’t even sing- I could see his mouth was still- just every now and then popping with a verbal tic.  I hoped that everyone would be kind; that Mrs. J would be right there; that maybe the microphone would go out.  And we waited for Speaker #8.

He and a little girl- Speaker #9- strode out to the front of the stage, where he picked up his microphone.  I heard him take a deep breath.  And we in the audience heard every word- clearly, in the right order, and  with almost perfect pronunciation.  He hit every “l”, every “r” and paused between sentences.  He lost his place once, and quickly righted himself, finishing the sentence.  And then, he was done.  He waited for the little girl to finish, bowed and took his place.

When he looked triumphantly in our direction, I lifted my hands to clap for him so that he could see, but I could barely make him out through the blur of tears in my eyes.  The enormity of what he had just done just overwhelmed me and I… I sat in that audience and quiet, silent tears absolutely streamed down my face.   His speech teacher, who helped me fight for services last year, was sitting right behind me, and reached over to pat me and said “Nice work!”  I leaned back, and in a choked whisper said “Thank you.”.  She and I both knew that I was thanking her- for her instruction, for her insistence on giving service to a child who “wasn’t affected” academically, but was wobbling right on the edge of problems, and for her persistence.  And I was thanking God that Ray did it…  He could do it and he did do it.  Tonight, he did not let Tourette’s win, he did not let anxiety win, he did not let speech problems win.

As I was tucking him into bed, I shared with him…

Courage is not the absence of fear, but the triumph over it. Nelson Mandela

Ray got one of his perfect, rare smiles and snuggled down- silent now and proud.

My great-grandmother, in her imitable Texas way, would have called it “Grit” what he did tonight.  And she, too, would have been proud.

November 7, 2010

Falling Back

Filed under: Autism,Bipolar,Tourette's Syndrome — Teacher Professor @ 2:00 pm

Time keeps on slipping, slipping, slipping…. into the future.  Until Daylight Savings Time ends, of course.  Until we have regression.  And we’re having regression…

We’ve been having a good run of things-a very good run.  A few months of relative calm, a few months of good balance with medication and a few months of feeling like we’re on top of this.  

And that’s why this past week feels so… so foreign.  Why it’s snapping back to THAT place- that place of desperation, that place of frustration and that place of grief.  Again.  It’s almost Pavlovian how fast it comes back. 

Ray’s stopped eating.  Again.  Whether his lack of eating is a cause or a symptom of his issues is something that I would dearly love to know.  Probably both, but it’s a vicious cycle I appear to be unable to intervene in once it gets going.  And I never seem to be able to “catch” it before he’s gone off the rails so completely that there’s no going back.  Yesterday he took 3 hours to eat one piece of sausage.  I was holding fast that he WAS GOING TO eat and that he couldn’t get out of it.  No, he couldn’t go to his room.  No, he couldn’t substitute it with something with carbs- he HAD to eat either a protein or a vegetable.  No, I didn’t have any bacon.  No, he couldn’t eat McDonalds instead.  And no, he couldn’t play in the last game of soccer until he ate.  And so he missed it- he missed his last game because he couldn’t choke down the food that is necessary. 

There’s a fine line with Ray between anxiety and control issues.  If he had been unable to eat at all, I would have found another way, but when he kept trying to offer me alternatives that he preferred- alternatives that did not meet my criteria of protein or a vegetable that was healthy- I knew that the issue was control, not anxiety.  The more he dug in, the more I dug back.  It’s such a battle of wills sometime, and I feel like so much is on the line- that if I “give in” he will fall apart even more than he does already. 

It hurts my heart so much that he uses food as a means of a control battle.  He fights us on homework, cleaning his room, etc., but food is the battle that is the most trouble.  I offer him choices- I provide options, and he fights me on those.  Last Wednesday, I asked him to come up with – and he could make it himself- a meal that had a protein and a vegetable.  He chose Mexicali Round Steak from my Crock-Pot cookbook.  Yum!  He was excited, he chopped and he put it all in together.  We all left for school, excited at what was for dinner that night.  That night… he didn’t “like it”.  Could he have buttered toast instead?  Could he have candy?  I said “No”, and he ate nothing.  I offered that he could have candy when he was done with the dinner he had come up with.  He ate nothing.  He dug in his heels that he was not going to eat and I dug right back.  We finally compromised on peanut butter crackers- of which he only ate 2.  He went to bed- hungry.  Again. 

This ongoing challenge is made worse because he’s dreadfully underweight.  He’s 8 1/2, and weighs 48 pounds.  He’s weighed 48-49 pounds for a year and a half.  My friend Elaine was shocked when she saw him without a shirt on- he looks like one of “those” commercials- those “please give money to feed the hungry” commercials.  He refuses to drink supplementary shakes, he refuses to eat anything other than toast and candy.  He would rather go hungry. 

The horrible thing is that he has done this literally his whole life.  He would nurse until he wasn’t hungry anymore- not until he was full.  20 minutes after he had nursed, he would be on full throttle screaming and I knew that it was because he was hungry.  I would offer; he would refuse.  I would dribble milk onto his lips and he would finally take the nipple, and release it a few minutes later.  We would have peace for a moment, until the whole cycle repeated itself.  He weaned himself at 11 months because he refused it altogether.  Between 1 year and 2 years of age, he was diagnosed as “failure to thrive” because he did not gain any weight- not one ounce. 

We do know what to do- we have a whole range of things to do.  We have tried yelling; we have tried firm silence.  We have tried firm schedules of meals; we have tried allowing him to graze during the day.  We have tried rewarding good eating with toast or candy, and we have tried giving him control over what he eats.  We’ve tried letting him eat whatever he wants as long as he gets his vitamin or the supplementary shake; and we’ve tried serving balanced meals. We have a nutrition web site on our Favorites for him to reference and see what he’s eating.  Each of these might work- at different times.  And each time he does this, I’m never quite sure what combination of things to try now… what will work today?  And when he refuses the vitamin and the shake, I feel stuck.  He digs in and I have to dig right back.

And so yesterday was spent on the sidelines of a really great soccer game that my husband was coaching that came down to a sudden death in penalty kicks between Ray’s team and the opposing team.   He was not going to eat the sausage, and I was not going to buy McDonalds.   And so he missed it- he stood there and ticced and ticced and ticced and refused to eat. 

My poor husband- as a coach, he needed Ray.  There were injuries and there were skills that Ray has that the team needed.  At one point in the game, he came over to ask if Ray could play- his team needed him.  I pointed to the 1/2 piece of sausage still left and told Ray that if he ate it, he could go and join his team.  He said “No”, and I had to tell James that Ray wouldn’t play.  It just killed me to see Ray ticcing away, watching his team, and refusing to eat. They won, by the way. 

And it kills me when Ray screams at me “I hate you!” and I have to remain firm, remain firm.  That if I give in, then he and I both fall apart.  Then he eats nothing but toast and candy and will never do homework.  Then he will never learn self-control because he doesn’t know what control looks like.  Then, the autism/bipolar/anorexia… whatever it is- wins. 

And that’s one thing that I will never allow to win in this fight for my son.  But it sure is hard.  And it sure involves a lot of tears.  It’s so hard when we Fall Back…

And the great irony is that the more my son refuses to eat, the more I seek solace in the same foods that he wants.  I eat the “good for you” stuff to model for him what healthy eating is and to encourage him to keep me company in this food, and then I drown my worries in the stuff that he craves as well.  Ben and Jerry’s does fix things for an evening- but takes a hell of a toll on me.  The irony of our having opposite weight problems does not escape me….

November 3, 2010

Halloween- Done

Filed under: Autism,Home Things,Tourette's Syndrome — Teacher Professor @ 6:06 am

I have to admit that I don’t really like Halloween.  As an anxious kiddo, to have scary, creepy things wandering around, to have the lack of control of the chaos that Halloween produces- was a bit overwhelming.  The laughter is too loud, the activities too frenzied and the movements of trick-or-treaters too erratic.  I’m glad when it’s over.  The season of fall- the season is wonderful!  Halloween, not so much.

It is, naturally, my husband’s favorite holiday.  He loves to be scared with horror movies- a feeling I have never enjoyed and certainly never sought.  He loves the plethora of candy.  He loves the dangling skeletons and the creepiness of it.  However, even he doesn’t like the dressing up.  I laughed with him that I feel like I’m in costume and acting out a role every time I go to work- I don’t need the stress of coming up with yet another persona for one day.  It’s hard enough being “On Top of It All Professor” and “In Control Mother”.  Adding “Sexy Witch” or some other costume to the roles that I juggle every day is too hard.

This is not a feeling shared by my neighborhood.  We live in a neighborhood that we call Mayberry to our friends.  The moms all stay home, there are children everywhere and they all go outside to play.  And on Halloween, they let out all the stops.  Everyone decorates their house, there is a Halloween parade in the park in front of our house, and everyone from the whole county comes to our neighborhood.  Some houses play spooky music and all of the houses outdo each other in decorations.  Golf carts hauling hay wagons cruise the streets.  One parent stays home to hand out candy-inviting grandparents and friends over- and the other grownups mill in the streets, often drinking adult beverages and refilling them at various houses while the children go house to house.

It’s a huge party in the streets and it is great fun!

In the midst of all of this hoopla, keeping the children on an even keel is difficult.  They get overwhelmed as well.  Elizabeth handled it fairly well this year.  She and Ray are often called Thing 1 and Thing 2 as nicknames by Vicki (along with Little Ducks and chilDREN).  Because Emily is often around, she has become Thing 3 in an inclusive approach by Vicki.  Elizabeth and Emily were discussing what to be this year- because OF COURSE they’re going to go trick-or-treating together– when they thought of being the Things.  Ray, in his contrary way, refused to join the group, so by default, Emily became Thing 2.

Elizabeth got very task-focused about Halloween.  Halloween became a job of how to get the most candy- which meant that she was going to stop at every single house in our neighborhood.  She loved the attention.  Elizabeth is, to put it mildly, an attention hog.  She sings, badly and off-key, but loudly at shows.  She never has stage fright.  She is a born performer.  Halloween is right up her alley.

Emily… Emily became an adolescent right in front of my eyes.  We started off, and Emily got sulky- quiet and glowering.  I had to ask what was wrong, and she whispered “People are laughing at me”.  I got irritated and firm and pointed out to her that of COURSE they were noticing her outfit- it was an outfit designed to attract attention.  They weren’t laughing, they were noticing- a fine distinction she couldn’t make.  She continued to sulk and hide until she realized that with cute outfits comes extra candy- that the houses were commenting and giving her extras.  THEN, the outfit became ok.

I was reminded at how close adolescence is for my two- where, in the words of Rick LaVoie- the job of the adolescent is to avoid embarrassment 24/7.  I can’t help but wonder what variation of this Elizabeth will have… she’s behind Emily in this respect, too, but for once, I’m not sorry about this delay.

And Ray- the pressure of dressing up got to Ray.  He wanted to be everything “cool”- he couldn’t make up his mind for the longest time.  He wanted to be a cop, a military commando, a Star Wars character, a ninja.  He couldn’t decide which one would make him look the most “cool”, be the most strong and be the most tough.  He first chose Prince of Persia outfit, which was great, until he realized that the costume was a size 4- and it fit.  Short, but it fit.  That made him feel small.  Then, he liked the Roman helmet with the sword.  But by the time Halloween came, he had lost the sword, so he wanted to carry his futuristic looking water gun.  Everyone asked him what he was, and since “Roman Prince of Persia from the future” was too long, he opted for “From Star Trek!”  One very nice man at a house said “Oh, I remember that episode!” and I could have kissed him.

Ray also quit trick-or-treating early.  About half way around the circle that is our neighborhood, he asked to go home.  It got to be too much for him.  His tics started in earnest that they couldn’t be hidden any more.  Elizabeth and Emily were on Operation Candy, so they were determined to hit every house.  Ray went home to help Daddy hand out candy- a task that he enjoyed because he was in charge again.

But the greatest part of Halloween for all of us was the end.  Elizabeth quickly sorted her candy- rows and categories- accounting for what she had achieved.  Ray also organized, but he wanted to revel in the haul.

We all went to bed, exhausted, sugar-sick, and glad that Halloween comes only once a year.  And next year, Elizabeth and Emily have decided to go as Georgia/Florida cheerleaders.

October 27, 2010

Excusing Tourette’s

Filed under: Tourette's Syndrome — Teacher Professor @ 1:03 pm

I read last night where the lawyer for the “Hiccup Girl“, who is accused of murder, is considering using Tourette’s as her “excuse”.  I’m absolutely livid.  I can see Tourette’s as a reason for:

  • Spitting in public
  • Rolling eyes
  • Body twitches
  • Impulsive calling out
  • Cursing
  • General crankiness
  • Funny accents

But as an excuse for murder?  I think the lawyer is doing the field of disability a tremendous disservice- and he clearly doesn’t understand the difference between Excuse and Reason- a difference I have made very clear to my own children.

A Reason,  as we define it in our family, and as I teach my teacher education students, is the psychological or biological need that someone is trying to fulfill- the need for attention, the need for food, the need to feel in control of your life.  These are needs, and Maslow does a much better job than I do of describing them.  Reasons are essentially the need to seek something, or escape something. 

We all have reasons for behavior:

  • I am anxious and so I twirl my hair to escape the anxiety
  • I am not feeling connected, and so I reach for a hug from my husband
  • The noise level of the store is too high and so I scream.
  • I had a bad day at work and so I eat ice cream to make it better
  • A friend of mine never had a good relationship with his mother and so he drinks.  A lot.

There are always reasons…

But EXCUSES– excuses are when when you’re truly not in control of your response and haven’t learned how to be in control of your response. 

  • My child has autism and fixates on Legos during socially inappropriate times- that’s an excuse. 
  • My child has Tourettes and spits when he’s tired- that’s an excuse
  • Someone has diabetes and faints- that’s definitely an excuse. 

The line becomes blurry when others make the judgment about whether something is a reason or an excuse.  Recently, Brian King noted that his son with Aspergers had been bullied and was called a “retard” by a neighborhood kid.  He sent out a letter to the neighborhood parents explaining why his son Zach was so intense and stubborn.  He wasn’t just providing a reason; he was providing an excuse.  Zach, his son with Aspergers, could not control his social issues.  The mother of the boy who did the namecalling apologized for her son and stated that her son had been bullied himself and he was taking it out on Zach.  She was making the distinction between the reason the boy was a bully, but took responsibility for the choices he could make in his words, and so there was no excuse for his behavior.  When choices are possible, there are no excuses, despite there being reasons. 

We are judged all the time by others who assume that our children have control over things that they cannot control.  That little girl screaming in a toy store?  Autism.  That other little girl lashing out at other children?  Autism.  My son lapsing into an Australian accent?  Tourettes.  And even my daughter’s fixation on getting things perfect and exactly lined up?  Autism combined with Giftedness.  In all of these cases, the “thing”, the neurological difference, the chemical imbalance, the NEED was far bigger than the will.  There are no possible choices available to the child.  As I remind my children when they make judgements “Do you think that the child WANTED to behave this way?” These are excuses.

But reasons are just that- reasons.  Our will, our mind, our choices can often control them and change the outcome.  Freud called it the battle of the ego “I” to balance between the ID of the “want” and the superego of the moral “should”.  And that balance is a constant teaching moment and at times a battle.  The size of the battle can be enormous and people going through that battle need sympathy and understanding and support.  The reasons might be ENORMOUS, but if there are other possibilities available to them, they are not complete excuses. 

  • When I eat that ice cream at the end of the rotten day, I have a reason for eating it, but not a real excuse.
  • When my friend drinks to excess and ruins his relationship with his wife, he certainly has a good reason, and it is a significant battle, but ultimately, it is not an excuse.
  • When my son with Tourettes calls another child a name, he has several reasons for doing so, but it is not an excuse.

And that line between reason and excuse is one that is so highly dependent on the developmental level of the child, the context, the level of control and the level of need.  When my daughter whines because she doesn’t like the food, I have to make the call “Is this autism or is this just whining 4th grader?”   On any given day, she might have control of the whining, and she might not. 

Recently, my mother pointed out something to me that I’ve been pondering ever since.  My son has a Tourette’s tic where he spits.  Gross, to say the least.  But everything I’ve read said that kids with Tourette’s can’t control it and that to call attention to it makes it worse.  So, for months, we’ve ignored the wet spots on our carpet, the wet spots on our table and the wet spots on the couch.  My mother, recognizing that while he may not be able to control his act of spitting, he can perhaps control where it goes, asked him to carry Kleenex to spit into.  He hates it.  He hates holding it; he hates being reminded of his Tourette’s and he hates dealing with it.  So, he has decreased his spitting.  A lot.  The discomfort of the Kleenex is worse to him than the spitting.  It acts as a reminder to him, as a means of managing it.  I ask him to spit into a Kleenex, he growls at me, he picks it up, and he stops spitting-…during the day.  At night, when he’s tired, when his energy is low, when he’s trying to self-regulate everything, the need to spit is more than he can manage- and so he spits at night.  We are now shifting our focus to his managing his symptoms- not controlling them.  He can’t control his Tourette’s- but he can manage it.  Tourette’s is not an excuse for most of his behavior.  It might be a reason, but with self-management, it is not an excuse.  My mother taught me that even though he has Tourette’s, my son is capable of much more than even I thought. 

I understand that the lawyer is looking for an excuse for murder.  There are probably several “good” reasons for murder- whether they make it to “excuse” is somethat highly debatable.  They all involve a perception of choices and possibilities:

  • If someone has such a low intelligence or in such a deranged mental state that the understanding of someone else’s right to life is not there- that might be an excuse.
  • Beaten Person Syndrome where a person is consistently beaten over and over again and is so controlled by someone else that they only see murder as the way out of their own eventual death- that might be an excuse. 
  • Fear for your own life where you kill or be killed- that is an excuse.

In all of these “excuses”, there are no other possibilities, there are no other choices. Which is why this lawyer’s use of Tourettes as an excuse for murder is so offensive to me.  What he is trying to argue is that Tourette’s is so unmanagable, that there is no control, that children are so controlled by their Tourettes that they have no self-control choices at all.  Even to the point of committing murder.  I can understand that someone spits; I can understand that someone calls out; I can understand that someone can’t sit still- Tourette’s is clearly an excuse for these behaviors.  I can even understand that Tourette’s may be a excuse that she wants something from someone very badly and has a tantrum that she can’t have it. 

When I told my son about this news, he looked shocked and said “That’s… that’s.. that’s just WRONG!”

Tourette’s as an reason for murder?  That’s no excuse.

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