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.

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. 

December 1, 2010

Reading My Children

Filed under: ADHD,Autism,Home Things — Teacher Professor @ 2:17 pm

Books fall open, / you fall in, /delighted where, /you’ve never been.
Hear voices /not once heard before, /Reach world through world, /through door on door.
Find unexpected /keys to things, /locked up beyond /imaginings….
True books will venture, /Dare you out, /Whisper secrets, /Maybe shout,
across the gloom, /to you in need /Who hanker for /a book to read.”
David McCord

We’re reading “A Wrinkle in Time” these days.  Or at least, I’m reading it aloud and the children are listening.  Throughout their lives, I have tried to pick books that are just above their reading levels, or books that they just wouldn’t encounter often.  I try to read chapter books that are “hard” for them.

It saddens my heart that my children do not love to read books the way that I do.  Elizabeth will read short fiction books about silly girl issues to get the Accelerated Reader points at school, and Ray will read non-fiction books about WWII and science out of interest in the subject matter, but they are not inclined to head for the long chapter books for escape.   But then, they are having very different childhoods than I did.  I grew up an only child with no access to television, and living far away from other children.  Books became my solace, my companions, my escape.  Even as a grown up, I will read during times of stress, times of boredom and times of renewal.  My mother and I used to have reading time together, where she would read her book on her bed, and I would stretch out beside her and read my book.  We would breathe in rhythm and share in the experience- blinking at each other when one of us would move.

I read to my students when I was the classroom.  Everyday after lunch, I would read for 10 minutes and then they would read silently for 10 minutes.  It was unstructured, and lovely and far too short.  And so I try to read to my children. I vary my voice for each character- adding accents, intonations and feeling- and I add sound effects.  I do not stop and ask comprehension questions (but I answer them); I do not explain hard words (But I provide synonyms if I’m asked); I do not stop the flow of the story.  I want us to be in that place the author writes about- not in an academic exercise.

I have started and stopped so many books- good books- that for some reason, didn’t resonate with them.  Or they had a hard time following.  Or the ADHD kicked in.  Or we were packing/unpacking and the thread of the story was lost.  Or Elizabeth was in a place where she couldn’t process auditory information.  Or Ray was too bouncy/oppositional to listen.  Or either of them couldn’t handle my voice changing characters and reacted to my changed accents with extreme irritation.  It is a challenge to figure out when to keep going, when to stop, and when to change books.   Reading aloud with my children is an act of navigation.

We have started and stopped:

  • Little Women
  • Jack and Jill
  • Hans Brinker and the Silver Skates
  • Little House on the Prairie
  • Treasure Island
  • Harry Potter  (The first one- we have started it at least 15 times, but something always interrupts it…sigh)
  • The Adventures of Sherlock Holmes
  • The Lightening Thief (too scary about 3/4 of the way through)
  • Gulliver’s Travels- Bored me, too

But our list of successes is pretty wonderful.  I have read aloud, and they have been passionately involved in, the stories of:

  • Winnie the Pooh
  • Little House in the Big Woods
  • Five Little Peppers and How They Grew
  • Black Beauty
  • Harriet the Spy
  • The Secret Garden
  • The Phantom Tollbooth
  • and now… A Wrinkle in Time

Each book takes about a month and half to read- which is a long time to maintain a story line- a long time to maintain a schedule- a long time to maintain attention.  We generally don’t pick up another book for a while once we finish one.  But the good books- they just make schedules, attention, and plot lines so easy.  Last night, when Meg Murray says “Oh MOTHER!” in response to her mother saying that she still plays with dolls in front of Calvin, Elizabeth laughed so hard she cried.  Ray was asking questions about what it means to be different and smart.  They acted out the scene where Mrs. Whatsit fell over backwards after pulling off her boot.  They’re hooked.  And while they may not understand the allegorical aspects of the story, they get the power of the literature.

So many books- so few years.  I see the children growing up and I know that the days of my reading to them are numbered.  I look at my bookshelves of books that I have kept since I was a little girl- kept because I loved them and I wanted my children to love them.  And I hope that we will get a chance to read:

  • Anne of Green Gables
  • The Chronicles of Narnia- all of them!
  • Harry Potter- all of them, too (although that probably won’t happen..)
  • Island of the Blue Dolphins…

I hope we get to them all… and I hope that we continue to have nights like we did last night, where in the soft yellow light of the living room light, the children sat on the couch with me and hung onto my every word- laughing at the clever writing, smiling at the human moments, and looking concerned about the impending climax.

A perfect performance, a perfect audience, a perfect moment.

July 7, 2010

You Just Need To…

Filed under: ADHD,Autism,Bipolar,Tourette's Syndrome — Teacher Professor @ 12:56 am
  • Be more firm with him
  • Not put up with that
  • Make him clean it up
  • Ignore her when she does that
  • Reduce the sugar
  • Give him coffee
  • Stop relying on medication
  • Tell him to stop that

“Wow, you DO have a lot to deal with!”

Somehow, we’re in a pattern of other people- random people, people who love us, people who know our children- giving us advice where they know the answers because our answers aren’t somehow good enough or aren’t working well enough.  Or at least it feels that way.  I know that, for people who love us, such advice, solicited or not, comes from a place of shared frustration, a place where you have to try something else, because whatever “this” is now, isn’t working.  And for those who know us, it comes from a feeling of confidence- a place of “well, this works for our child when our child is acting out, so I suggest that you try it too”.

But I have to say- I’m getting really tired of it.

Yes, I know that my son is disorganized.  Yes, I know that my daughter is whiny.  Yes, I know that James and I are dysfunctional at times.  Yes, I know that our household is noisy and chaotic.  This is not news to me.  And yes, I know that I have to be firm, and make them clean up and help him replace behaviors and tell her to stop acting that way.  I know all of this.  I know that there is a fine line between spoiled and autism.  A fine line between poor parenting and Oppositional Defiance. A fine line between labels and excuses.

But I also know that we’re tired.  We’re tired of constantly battling- battling fear and anxiety and contrary behavior and overload.  We’re tired of always having to be “on top of our game”.  We’re tired of the stress when the other parent makes a choice we wouldn’t have and the fall out is extreme.  We’re tired of making sure that we’re on the same page at all times.  We’re tired of managing our children and not enjoying them.  We’re tired of dealing with our own anxieties, sensory overloads and sadness- the issues that our children inherited naturally.  We’re tired of finding our own coping strategies and losing the balance of our lives.  We’re tired of people who have had only one child, or no children, or three perfectly-behaved children make judgments about parenting two children with a variety of needs.  We’re tired of people sympathizing at the daily challenges we face, and then implying that it’s our own fault.

  • To those who love us- we’re doing our best
  • To those who know us- try walking in our shoes before you pass on your words of wisdom
  • And to those random people- I would like to tell you what you need to do…

But I am a good Southern woman, and I will simply say “Bless their hearts”.

June 28, 2010

Wild Places

Filed under: ADHD,Home Things — Teacher Professor @ 11:08 pm

Jack is in town and we’re playing tourist in our area- always a fun thing!

We took a ferry over to Cumberland Island– one of the few National Seashores.  It’s an enormous island and the only association I had before today was that it was the site of JFK Jr’s wedding.  The entire island was owned by the Carnegie family around the turn of the century, and so it never got significantly developed.  In the early 1970’s, the remaining families kept some rights, but transferred property to the National Park Service- which makes it an almost pristine island.

And it’s magnificent!  There are no wheeled vehicles allowed, except for bikes you can rent (which we did not at $16 each!) and it’s only accessible by boat.  There are no trash cans, so you are to bring your stuff in and take it all off.  The live oak trees are absolutely marvelous- craggy and dripping with Spanish moss with palmettos underneath.  And it’s quiet- only tree frogs and butterflies the size of small plates who come to investigate you and flutter around the bags we carried.  We hung out at the beach and then walked and walked down a road of a long arch of trees in the rain that was the same temperature as our skin, so that it wasn’t cold, but not hot.  Best walk in the rain I’ve had!

The beach was stunning.  We felt as Columbus must have- coming off the beach into the quiet, drippy forest that wasn’t as dank as I expected and dappled with phenomenal light. But we were most amazed at the wildlife- truly wild.  There are wild ponies on Cumberland- ancestors of horses who were shipwrecked from Spanish galleons hundreds and hundreds of years ago.  They looked like- well, horses, but scrawnier and tougher- and they left hoofprints that had never seen a horseshoe.  They were very peaceful and playful- truly wild and free.

And we saw manatees, wrestling in the water, a mama, a calf and another one- Daddy?  They were in six inches of water and mud, right off of the dock, either playing, scratching off their barnacles, nursing, or all three.  We stood in the rain and watched them for over half an hour.  They were very peaceful and playful- truly wild and free.

And best of all, Jack and Ray played in the water, jumping the waves, over and over again.  They would charge the wave, and jump as high as they could before it would crash against them, and then run and do it again.  They were peaceful and playful- truly wild and free.

Cumberland Island is a haven for all kinds of wild creatures to feel safe.  And to play…

I’m so glad places like this still exist.  I wish there were more… support the National Park Service

June 25, 2010

Birthdays and Walls

Filed under: ADHD,Tourette's Syndrome — Teacher Professor @ 5:43 pm

Yesterday was my birthday- and it was… compartmentalized.  And very, very sad that I just won’t let myself dwell on or I will give in to sorrow.  Can I vent?  Can I just pour out my hurt and my despair and trust that you won’t judge- that you will listen? 

We had an appointment with the pediatric neurologist for Ray yesterday- on my birthday- the neurologist who had recommended Daytrana for Ray’s ADHD.  I walled away my anxiety about going- focusing on my teaching, my fun green outfit, talking to my mother.  We were crabby about going, because the medication has had… mixed results. 

There was a little girl– ok, boy

Who had a little curl

Right in the middle of her -his- forehead

And when she– he- was good, she– he- was very, very good

And when she– he- was bad, she– he- was horrid.

When the medication is working, during the middle of the day, Ray is great.  He’s focused, charming, funny and writing poems.  And when the medication is wearing off, he’s awful, awful, awful.  Worse than not on medication.  Awful.  And it takes three hours for the medication to wear off.  Awful.  Irritable, right on the edge, and sometimes falling off of control, hurtful and sensitive.  I mean- awful.  And the medication makes his Tourette’s worse.  Like very much worse.  Like he’s spitting, which despite my best intentions, just totally grosses me out.  When the medication is working, he’s in charge of his Tourette’s, and when it’s wearing off, it’s awful.

So, we told the doctor that while we kindof liked it, we really didn’t like what else it did.  Was it worth it?  We weren’t sure. 

So, she put him on a medication, Clonipine, to help with his Tourettes- similar to the guanfacine we had originally wanted, but “with less dopiness”.  Good?  Is this what we want?

On the ride home, James and I talked- about how we feel boxed into the medication route, but that we didn’t know enough, we’re too involved as parents.  We don’t feel we have good access to therapists here- we’re driving 2 hours one direction just to talk to this one neurologist.  Are we grieving and don’t want to accept this?  Is this a small problem that you throw a couple of pills at and all is well?  Is this a major problem and we need to treat with lots of therapy?  Are we making too big  of a deal out of it?  Should we do something now before it gets to be a big deal?  So many questions- and no good answers.

And therein lies the rub- I’m a professional.  I can help other children.  But my own child… my own child- all of my professional knowledge and skill goes out the window.  And Ray doesn’t see me as a professional to help him- he sees me as Mommy.  Mommy to love and Mommy to fight.  Mommy to argue with and Mommy to hug.  Mommy who doesn’t know anything, but knows too much.  Ahh- the dual nature of Mommies.

And so, on the long, long ride home from the doctor, he fell apart.  He started saying horrible, mean things- things designed to hurt.  “How dare you!  How could you drug me?  What kind of mother gives her child something make him sleep?”

“Wait a second!” I defended myself/us/our decisions.  “This medication is for your Tourette’s.  It makes you sleepy, so you have to take it at night.  But if you don’t want it, I’m not going to make you take it.  This is just to help you with your Tourette’s.”

And during that long, long car ride home, he wobbled back and forth between shrieking that we were too noisy, we were talking too much, the road was too bouncy, leave him alone- and lashing out at his sister who was teasing him, who was pestering him, who was in reality, sitting there quietly, playing with her own game, her own string, humming-lost in her own retreat.  Autism as self-protection.

And as we waited at Sal’s Pizza- the best pizza in the world where our friend Vicki was meeting us, he stood sullen, asking over and over, “Why can’t we go home?  Why do have to wait here?  It’s going to be 30 minutes of waiting- we need to go home NOW!”  Fixated on going home.

At Sal’s, we ordered pizza and breadsticks- trying to get some food into him- all of which he refused, adding hunger to his mix of misery.  He “agreed” to take one bite of pizza, which did turn into 1/2 a piece, but all through out the presentation of the homemade apple pie Vicki brought me for my birthday dessert, and the funny book and oh-so-sweet card James got for me, he glowered and hmphed and growled and sighed.  He did sit.  He didn’t make a scene.  He did play quietly with his pizza dough. His anger was absolutely directed at me, at us, at his resistance to our decisions- at his Tourettes and his anxiety and our defining it as a problem.  I walled out my own anger, my own frustration, my own feeling of inadequacy in the hubbub of the pizza place. I ate three slices that might as well have been cardboard.  I smiled.  I chatted with Vicki.  I made small talk with the waitress, who wished me “Happy Birthday”.

And when we got home after a long day, with birthday party preparations, he slammed the door to his room.  James went in when the candles on the apple pie were lit (the 4 and the 3 from the children’s collection) and asked him to come out- “NO!” resounded throughout the house and the door slammed shut- again, for extra emphasis. 

I know, I do truly know that he was “going to ground”- that it was his way of handling stress, of feeling “less than”, of coping.  But as the (off-key) “Happy Birthday” was sung by my daughter, my husband and my good friend, I ached that my son was not/could not be there.  I was not going to let him control the situation- I knew that he needed to know that the structure of “home” was something that he could depend on, I knew that he had to learn to calm himself down and that any drama would feed right into his rocky sense of insecurity.  And so, I laughed and smiled and accepted the good wishes- and walled off the grief.

I bent down to blow the candles out, and in addition to the general “Health, Wealth, and Happiness” that I always ask for, I added “And please help Ray this year”.  And I walled it away and laughed with Vicki and ate ice cream and pie and pretended all was well.  Which, it was, in a way.  Last birthday, I was by myself, teaching in KY while my family was here.  The birthday before that, James was in CA.  At least this birthday, we were all together, facing it together.  There is strength in that.

Ray- finally- came out of his room at 10:00pm- an hour past his bedtime.  He came out to ask for the new medication, to ask for help, to ask for a hug.  I asked him if he was sure- if this is what he wanted to do and he said “Yes.  I want it to go away”. 

“It won’t go away,” I told him.  “This is just to help your body regulate it”.  And he chewed it up with an expectant look on his face. 

I held him close- and the walls that had held up all day- his and mine both, finally cracked.

May 13, 2010

Relief on the Homefront

Filed under: ADHD,Gifted,Schools,Twice-exceptional — Teacher Professor @ 1:08 pm

We are celebrating- whooping, throwing up our hands and dancing a sassy dance!  Ray PASSED his CRCT! 

This news is not unexpected in terms of his knowledge of 2nd grade material.  Ray is smart as a whip.   But Ray’s anxiety has been an issue all Spring.  Because we moved to GA in August and he had been in a Montessori school, he started off the school year unaware of the seriousness of THE test that would be coming at the end of the year.  THE state test.  THE test upon which passing to the next grade is dependent upon (never mind how hard he works or demonstrates that he can master content during the year- THE test is the only marker that is used… but that’s a whole ‘nother rant).  When February came, he figured it out quick.  The school had pep rallies.  The school had CRCT practice sessions.  The school had “Fun in the Sun” games for children passing their benchmark tests.   And on the last benchmark, which Fun in the Sun was based, he failed.  He failed because his anxiety shut him down.  He failed because the pressure was too much. He failed, not because he didn’t know the material, but because he knew that his whole 2nd grade experience boiled down to one day.   We worked with his teachers to come up with an Improvement Plan.  He took more practice tests.  We paid money to him for his practice efforts.  His teachers, particularly Mrs. Lane, soothed him and encouraged him.  We quietly researched other schooling options and prepared to go broke paying for private school.  And we kept telling him that he could do it, that we all had faith in him.  What he needed, though, was faith in himself. 

And today, when he brought home his PASSING scores in Writing and Math and EXCEEDING scores in Reading, we’re celebrating!  We’re ordering pizza from Dominos and letting him watch television.  High times, indeed, in our household!

And we will be sure to praise, not the score, but his mastering of his anxiety.  The actual score is fine, but the fact that he could rise above his anxiety well enough to show most of what he knew is worthy of celebration.  That he could keep the baying of the hounds of his fears in their place.  That he could rise above the failure.  These are worthy of celebration.  And  next year, when 3rd grade is on the line for next year’s CRCT test, we will remind him that he did it once- he can do it again.  He NEEDED this success.  He needed to know he could do it.  He needed to know that what he was doing worked.  He needed to know that we all- the teachers, his family- believed that he could do it- and that he can too.  We all needed this. 

And not to be forgotten, Elizabeth EXCEEDED on all of her tests.  We will celebrate her achievement as well- and note her hard work and persistence, but her passing 3rd grade was never in doubt.  There is, perhaps, oddly enough, a bit of a blessing of the remnants of her autism.  She is fairly oblivious to the pressures and anxieties of testing.  Her anxieties come about from social issues and language issues, but school is a puzzle that she feels confident of mastering. 

So, tonight, we will eat cheese pizza and watch Disney Channel and enjoy the feeling of relief.  3rd grade starts soon enough….

Update: We actually ended up all piled on the couch watching “Extreme Home Makeover”.  And when I fussed over Ray’s conquering of his fears, he completely ignored me, interrupted me, and wanted to talk about his friend Bailey’s misadventures.  I thought that I was talking to myself and felt slightly foolish jumping up and down while he looked at me.  Funny what they really hear, though.  Later, he referenced it- “I guess the 3rd grade CRCT will be ok?”  Yes, Ray, it will be ok. 

May 3, 2010

Back to Our Regularly Scheduled Program

Filed under: ADHD,Bipolar,Twice-exceptional — Teacher Professor @ 9:39 am

Oh what a lovely reverie this last week has been- preparing for finals, the pause before the onslaught of grading and the relative calm of the children…

Interrupted by oh, such a night after our Derby party.  Probably a little too much homesickness.  A little too much excitement.  A little too much giddiness with betting fever and the resultant anxiety.

Poor Ray has been having a very hard time getting himself to sleep these past few weeks.  He’s been needing a longer and longer time of reading, of having us stay with him until he drifts into sleep.  A longer and longer time while his ADHD medications wear off.  He’s been staying up until 10:30pm most nights- and I finally drag myself into my room only to fall down in my bed.  Or my husband stays with him until James himself falls asleep, coming back to our bed in the middle of the night.  Not exactly quality bonding husband/wife time.  Not exactly quality sleep time.

Saturday night was our firm stance- “I’m sorry.  You can do this.  We will be here and you can come and check in with me every 45 minutes.”  I taught him deep breathing.  I told him he could read until he fell asleep.  I told him he could have the little light on.  I tried to teach him coping strategies.  And I don’t know if he can cope.

He cried for 5 hours, and was hitting himself in the face at one point, sobbing “I hate my brain.  I hate my brain”.   He was genuinely frightened and anxious and kept “seeing robbers” but at the same time, he’s so phenomenally stubborn.   And he DID have his medication patch on until 7:00pm.

Where is the line between being consistent and firm and having it overwhelm him?  Where is the sweet spot where you know that what you’re doing is the right thing?  I feel that with my daughter so often- she protests, I hold firm, she backs down.  I feel like I’m under attack from a pile driver from my son- that his hole of need is so big that I can’t fill it up and I don’t know how to help him turn around and fill it himself.  Autism makes me sad, but this… this… whatever it is, that has no real label, that could be bipolar, that could be ADHD, that is definitely anxiety, that could be giftedness on the edge, that could just be an overprotective mother- this frightens me.  I constantly feel like we’re navigating an uncertain landscape, where the ground keeps shifting and swaying and any mis-step could result in disaster.

My husband and I are generally on the same page and were holding firm together that night- we were NOT going to let him or his anxiety win this round.  But I was crying and James was grim and we had to make a conscious effort to talk to each other- to not let the stress and sadness drive us into our own coping place of solitude.

He fell asleep around 2:00am, keeled over with the lights on, full-blazing and “Calvin and Hobbes” in his lap.  I turned off the lights, closed the door so that he could sleep in, and moved the book so it didn’t hit him when it fell.  And I went back to my room and passed out.  Did I “win” this round?  I have no idea.

He, of course, did not sleep in.  And Sunday, as I watched him play quietly in the living room, firing his “bombs” from his Battleship game that he was playing by himself, and feeling the peace of the quiet house since my husband and daughter were off to a soccer game, I knew that he did not ask for this.  He craves peace and routine so badly that when things get off track, he acts out.  The anxiety gets him.  Add food issues and tiredness to the mix, and he’s a very unhappy little boy- which makes for a very unhappy mother.

April 8, 2010

Mixed Results

Filed under: ADHD,Tourette's Syndrome — Teacher Professor @ 9:05 am

So, with really no good choices, we’ve had Ray on his medication now for about a week.  It’s been… interesting.

Ray is on Daytrana, which is a patch that provides the medication directly into the bloodstream.  It’s sticky- and best of all, can be taken off when needed and can be cut down in size if needed.  Unfortunately, it takes about 2 hours to kick in, and about 3 hours to wear off.  So, there’s a lot of planning of WHEN to put on the patch and WHERE it should go.  It’s supposed to go on his hip.  But the stickiness of it means that it leaves a residue like a really gunky Band-Aid, so we’re rotating around where it goes.  And it can’t go where it hits his underwear, and it can’t go where his pants rub against it, and it can’t go… you get the idea.

I can’t quite figure out if it’s a good thing… but there are some interesting results.

For the first time ever, my son could tell me how he was feeling.  Of course, he was telling me “Mommy, I feel funny- all jumpy inside.  This makes my anxiety worse”- but he did so in a calm, focused manner.  No screaming.  No grunting.  Words.  Words that showed introspection.  WORDS!!  We held entire conversations that had a beginning, a middle and an end.  “What shall we do today?”  “Let’s go to the museum”.  “What is it about the museum that you like?” “It’s got cool things to play with.”  See the give-and-take?  I hadn’t really realized until this past week that while Ray has a lot to SAY, he doesn’t TALK with you.  I could see “him”- the real, thoughtful HIM that is fractured by attention and sensory issues.  He had focus!

However, what he focused on during Spring Break was controlling his anxiety.  He used his words, true, but his words were all about how bad he was feeling and how the medication was giving him “jumps” in his legs and making his heart race.  He looked panic-stricken a couple of times and said “Mommy, I feel scared, but there’s nothing to feel scared about”.

And his Tourette’s was much, much worse.  He’s started spitting, which is just gross now.  Tics?  I’m ok with.  People might look and wonder, but most don’t say anything.  Clearing of throat?  Also fine.  But spitting?  Spitting gets people agitated.  Spitting is a problem.  And there’s very little he can do.

Oh, he tries.  He spent a great deal of his new-found focus trying to breathe through his need to spit.  He’s started trying  to aim his focus at something else in an attempt to reduce his tics.  He read recently about a kid who focuses on a spot on the wall to get past the tic.  Generally, it works.  But so much of his time this break was spent with him staring at walls, that I started to feel concerned.

There was a list of expected side effects that we didn’t see- for example, reduction in appetite.  Well, he never had much of an appetite, so we didn’t see much of a difference.  He still didn’t eat much, but it wasn’t less than usual.

Of course, he was on Spring Break, so there weren’t a lot of highly structured activities for him to complete.  So, I’m not sure how well he’s going to do in school.  The teacher today said that he did “fine”.  What the heck is “fine”?  And to make matters worse, THE test, the state test, the test upon which moving up to the next grade is dependent upon- is next week.  So, it’s very, very important that he be able to focus in school.  The test is raising MY anxiety level….

I’m worried that if we take him off of it he won’t be able to focus at all.  And I’m worried that if we leave him on it, he’ll focus too much on trying to control his Tourette’s.   In either case, he won’t be able to focus on the test itself.  Or on school, or on friends, or on all of the things that make up his life.

Which just leaves me unfocused all the way around…

April 6, 2010

Kindred Spirits

Filed under: ADHD,Home Things — Teacher Professor @ 11:57 am

We just had a most amazing week with Ray’s friend, “Jack” and his family.  There is something so upliftingabout watching your child be accepted and loved just for who he is- and vice-versa.

Jack and Ray are two peas in a pod.  Ray tends to follow Jack’s passions, and they get on each other’s nerves after a while, but they both “get” each other.  They both can follow each other in energy bursts and imagination.  They both defy easy labels.  And they both give each other space when the other one needs it.  They finish each other’s sentences.  They start a story using Legos and end it with marbles.  They run and run and run and then turn around and snuggle with their mamas, unashamedly.  They both love creatures.  And they both grapple with “stuff”- albeit different stuff.  Both want to have friends, and aren’t sure how to go about making them.  Jack has an abundance of energy and is deeply passionate about a number of topics that many seven-year-olds just don’t “get”- from sharks to the Beatles.  Ray loves to read and is emotionally sensitive.  Together, they find kindred spirits in each other and it’s just so easy.

I was particularly impressed watching the boys at how quickly and easily they recognized each other.  They went to school together for two years, but we haven’t seen Jack since we moved last July- a very long time for children.  That’s a long time to get judgmental; to forget how the other one plays; what to say to each other.

I realized two things this week- 1) how much I love anyone who loves my child and 2) what real treasures our sons are.  I saw Ray through “other” eyes- his sensitivity, his moods, and the acceptance of those, rather than the rejection that so often comes in other’s eyes.  I’m sure his family saw the same things in mine- the love and appreciation of those very things that so many others condemn, but make Jack such an interesting and wonderful kid.

I was amused at how similarly we parent- trying to provide structure around our children, but freedom to move.  We both got yelled at today at the GA Botanical Gardens when the boys were climbing on large ledges that overlooked a path.  The ledges were about 3 feet off of the ground and Ray rarely falls.  We were right there and talking and monitoring them- but allowing them to enjoy the day and test their skills.  It really was a perfect day for climbing and scrambling and running down expanses of grass that others were walking on.  But when the Green-Jacketed Lady fussed at us “Young men, you need to get down from there RIGHT NOW.  You could FALL!”, we pretended to take her seriously, as we exchanged amused glances.  “Yes, get down, guys…”  And around  the bend in the walk, we then pretended not to see them as they  balanced up on the sidewalk edge.

Elizabeth is in the mix as well, but she does play a more minor role.  She is definitely “sister” and to be chased, not included in the game.  She was often the “monkey” for the game “monkey in the middle”.  Ray enjoyed being the “connection” between his friend and his sister, and relished the power that the intersection gave him.  Because so often it is Elizabeth who is playing with Emily and Ray who is trailing along, it was a nice exchange of power.  And Jack, an only child, enjoyed having someone else to run with and to act at the third point of the games.

Perhaps best of all, Elizabeth acts as a counterpoint when Ray’s issues overwhelm him.  When the stress of saying “goodbye” caught up to him and he was growling and glowering, Jack could turn to Elizabeth and not feel excluded.  Having Elizabeth allows Ray some space to gather himself back together and re-engage with his bestest buddy.

His bestest buddy who lives 12 hours away.  There is grief in our household tonight as we try to adjust back to day-to-day life without Jack.  As Ray tries, once again, to make friends when it’s not so easy and automatic as it is with  Jack.  Grief as he finds his strength again while struggling with loneliness.

A kindred spirit is a recognition of someone’s being.  I am grateful that we have such friends.

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