Professor Mother Blog

October 9, 2010

#1 Sports Fan

Filed under: Tourette's Syndrome — profmother @ 8:55 pm

I’m finding it simultaneously amusing and tiring how fixated Ray has become about the Georgia Bulldogs.  He notices every license plate, every hat, and every headline- and let me tell you, down here in South Georgia, there are an awful lot of license plates, hats, headlines and “Uga” dogs at every turn.  In other words, Ray is finding plenty to obsess about. 

He’s not alone, of course, which is why I sat in the car the other day and listened to him expound on the merits of the head coach, the quarterback and the various arrests of most of the players with information he had gleaned from the various males around here.  He’s little and he’s smart and he’s anxious, so he’s overcoming a lot.  He really wants to find a way to relate to the boys down the street, and so he’s learning football lingo.  He’s particularly trying to bond with Emily’s dad and brother who are both big football fans- men who are well over 6′ tall, large in size and in spirit.

But it’s also clear that he’s using sports as a means of controlling anxiety.  When he starts ticcing, he looks around and comments- or starts talking about the upcoming Georgia/Florida game- THE rivalry game that attracts thousands of people to the Island to party.  It’s quite the holiday around these parts.  He wants to know stats, the history of the game, how many times Georgia’s won, and so many other pieces of trivia that I just do not know.  He spouts facts as he clicks, as he spits, as he grimaces.  It’s now getting to the Pavlovian point where my heart hurts just a little bit more every time I see a license plate, a hat or a white bulldog. 

I’m particularly amused at James’ reaction.  James did not grow up in the U.S., much less the South, so the whole football mystique is incomprehensible to him.  He will watch the Super Bowl with me, but the whole game is something that he doesn’t really enjoy.  Soccer is his game- preferably European cup soccer.  He rolls his eyes when Ray starts spouting, but them checks his own soccer scores when he’s bored, stressed, or… anxious.  He withdraws into his Iphone FIFA site when things around him are stressful- like when his son is ticcing.  There I sit, with Georgia Bulldogs on one side, Paok Greek soccer on the other.  Like father, like son…

September 23, 2010

The Same- But Less

Filed under: Autism,Tourette's Syndrome — profmother @ 2:54 pm

I’m almost afraid to say this out loud…

I’m nervous that I’ll jinx it, or that by speaking it out loud, events will make me a liar.

So… come in close, will you?  Bring your ear to me… closer.  Touch some wood, will you?  Shhh..

I think that Ray’s medication is working.

He’s still Ray, and still essentially contrary, but the scenes- the screaming, the glowering looks, the yelling at us- those have all decreased dramatically.  He’s eating more.  He’s sleeping better.  I’m having a glimpse of the “real” Ray.  And you know what?  I kindof really, really like him.

He’s funny.  He’s doing his homework with only mild protest.  He’s enjoying school. He handles transitions better.   He still has tics.  He still sulks.  He’s still “deaf” when it comes to setting the table and getting ready, his room is still a mess, and he still doesn’t wear underwear if he can get away with it, but the fights to change those things are less.  The intensity of our interventions are less, but more effective.  The essential contrariness and irritability patterns haven’t been changed- but it’s muted.  It’s manageable.  He’s still Ray- but less so.

He’s on Daytrana during the day- 5mg- and Clonidine at night- 5 mg, and I’m grateful that the medications allow him clarity to respond to us, rather than losing him to the clouds of emotion, tiredness, and anxiety.  I’m grateful that the medications allow me the clarity to be able to reach him, rather than being lost in my own clouds of reaction, tiredness,  and anxiety.

I’m afraid to trust this.  I’m afraid to depend on this.  I know that things- tests, events, weather, illness- can undo it all in a moment.

But for right now, we’re reaching him, and for that, I’m grateful.  I’m deeply, deeply grateful.

September 20, 2010

The Persistence of Memory

Filed under: Autism,Home Things,Tourette's Syndrome — profmother @ 1:09 pm

I had a walk down Memory Lane yesterday that was… exhausting.

My grandmother is turning 91 next month, and we figured that, as the last of her generation, we would pull together pictures of her sisters to share with her.  Help alleviate some of the loneliness.  Only… there aren’t any pictures.  No one has pictures of her or her sisters, other than a few wedding photos and one when she was gorgeously posed at a swimming pool (Jane Russell had nothing on my grandmother).  But decades and decades of pictures are… not there.  There are a few taken of her in profile, a few more of the other sisters- in profile- but that’s it.

My mother had tasked me to look for pictures of Grammy, because surely, surely there are some from THAT trip- that trip to meet James, the trips to meet the babies, the trip when we were traveling through… surely.  And so, I dug out my boxes and boxes of photographs from my life.  Which was a feat…

I have moved houses 8 times in the last nine years.  Since I became an adult at 21, I have lived at 18 addresses.  My mother had my addresses listed in her address book under C for Claire, H for Hughes, L for Lynch, and has now resorted to D for Daughter.  (Don’t ask- jobs, graduate school, fires… lots of reasons).  That’s a lot of entries.  That’s a lot of packing things up, putting them into boxes to move on to the next location.  I have managed, like a turtle, to carry most of my memories with me from place to place.  The photos have survived a fire, a flood and Two Men and a Truck.  I even managed, during down times to organize some of them.

Which means that when I was out of a job when the children were 3 and 2, that year was very well-documented.  When I was homesick when I went off to graduate school, I have those years very well documented.  Elizabeth’s first year of life when I wasn’t working?  Very well-documented.  Ray’s first year of life when Elizabeth was 1 turning 2?  Still in the Eckards bags.  His second year of life when we were going from doctor to doctor and therapy to therapy?  Still in the Walgreens bags.  Eckards went out of business in our neighborhood that year.

I was supposed to be looking for pictures of my grandmother.  But instead, I went wandering down Memory Lane.  I looked at pictures I have had since I was living on my own at 19.  In the space of an afternoon, I relieved 25 years- And there were several things that struck me.

The first was how rarely our family has documented itself.  I have whole albums of the children only because of James’ love of the camera.  He handles social situations by being the Camera Man; by documenting it, he doesn’t have to be as involved.  But before James, I have a couple of parties, a couple of activities, and some “moments”, but not a lot.  My family tends to see the camera as intrusive, and we avoid it.  I have no pictures of my uncles, very few of my mother, a publicity shot of my Daddy, and two of my grandparents.  Even my wedding- a couple of shots of my family and that’s it. Lots of the babies, lots and lots of pretty views- but very few of people.

The second was how absolutely happy I looked in some of the old photos.  I know that I wasn’t completely happy- that I was anxious about work and school and sweethearts- but in most of them, I am with friends, we are having a good time and I was absolutely incandescent with joy.  Incandescent.  How full of love and life and joy I was.  And how in more recent pictures, I am tired and I am wary and I am proud and I am so many things, but that purity of emotion that youth posseses is gone.

The last thing that I realized, which is the hardest to admit, is that there was/is a huge difference between my two children.  Elizabeth is my child diagnosed with autism, but her baby pictures, her toddler pictures, her preschool pictures- show my happy, smiling baby, posing for the camera.  There are several pictures where she is absolutely balled up with joy as she grabs her toes, as she squeals, as she reaches for me.  There are some where her sensitivities are clear, as I comfort her at the beach, as she tries to do Tummy Time, but overall, she was a joyous baby.  Incandescent.

Ray’s pictures… Ray’s pictures are almost all of either him fussing or him watching.  Ray- my child without a label for so long, who has been diagnosed with Tourette’s but not autism- looks out at the world with wide, anxious eyes.  From the beginning, he looked startled and fearful.  And we have very, very few clear shots of him.  In most pictures, he is a blur, a movement, a profile.  There are a few exceptions- a precious few where his bright blue eyes are snapping with intense joy and he is interacting with someone- normally Elizabeth.  Those were the pictures we handed out to family.  Those were the ones that we passed around.  But there were achingly few of them.

This shot captures it- taken about 5 years ago for Halloween.

Or these…

In the boxes yesterday, I saw how my children are such a part of me and my family.  How Elizabeth lights up from within like I did.  How Ray’s dislike of the camera is a trait that is, apparently, inherited.  Although his profile is all Lynch, the turning away from the camera is all Silcock.  How necessary, and yet how uncomfortable, the camera is for documenting things.

I went to bed exhausted, as I told James, from “my emotional journeys”.  It was very difficult tracing those paths.  Of  remembered joys- of remembered heartbreaks.  Of realizing how many, many choices were made along the way.  Of recognizing how events in your life can both stoke and grind at the light within you.  Of recognizing how far down the road I’ve come, and how far I’ve yet to go.  Of being disappointed that I don’t have pictures to help my grandmother’s loneliness, but I do have pictures that make me grieve.  And laugh.  And smile wistfully.  And post random “Do you remember?” pictures on Facebook.  Oh yes, I have those…

September 4, 2010

Flipping Out

Filed under: Autism,Tourette's Syndrome — profmother @ 1:30 pm

This week, Ray started gymnastics class.  And he’s in love…

It all started this summer when I was looking for a week’s worth of summer camp after we came back from New Mexico.  I had started working, but the children were not yet in school, so I was on the hunt.  The local gymnastics gym offered weekly programs, so I parked the children there, knowing that Elizabeth would be happy- and Ray?  Ray would just have to suck it up.

Only it didn’t quite work out that way.  Elizabeth liked it, of course.  She’s double-jointed, ridiculously flexible and has loved gymnastics since she was a baby.  And she’s good.  Really good.  Really, really good.  For a brief few months when she was four, we were involved in competitive gymnastics, but she twisted her knee and that was the end of our Olympic dreams.    Elizabeth’s level of sensitivity is a problem in this sport.  When she gets a scrape, she carries on as though her skin were being flayed.  Ability to handle pain is a requirement for competitive gymnastics.  It’s not really a world that I wanted to live in.  I realized early on that Elizabeth’s autism would impact her in ways that I hadn’t quite imagined, but this was one of those missed opportunities that I didn’t spend a lot of time crying over.

It does mean that she gets to take recreational classes, amaze her teachers, and feel good about herself.  So, they went to gymnastics summer camp, and I expected Ray to fuss about it and be sullen for a week.

Only he liked it.  He complained about his sore stomach until I said that his muscles were getting stronger.  He liked holding himself on the rings.  He liked flinging himself around the pommel horse.  He liked it.

When I suggested that he and Elizabeth take some classes for fun this fall, he resisted it, though.  If it means a change in his schedule, Ray resists it.  On Thursday, I signed them up, and informed him that we were going.  He went straight into “Ray’s Black Hole” of dark looks and angry resistance, screaming “You can’t make me!”  I informed that I could indeed “make” him go.  “Well, you can’t make me do it!” he yelled back at me.

“That’s very true,” I said, as calmly as I could.  “You are more than welcome to just sit and watch.  Whether you do it or not is entirely up to you.  But you will go.”

When I asked him to change his clothes into t-shirt and shorts, he fought me again.  “I’m only going to watch!  How come I have to change?”

“Because I want you to have the option of changing your mind.  I understand that you’re only going to watch, and that’s fine.  But if you should want to change your mind, you need to be able to have the option.  That way, you can do what you want.”

I knew there was a chink in his resistance when he then went- quietly- and changed clothes.

Once we were there, Elizabeth was up first from 6:00-7:00.  She was doing one-handed cartwheels, showing no fear of the beam, and just generally looking like a star in the making.  Ray sat in my lap and drew miniscule pictures on a teeny piece of paper.  Hundreds of little people in a little army, fighting the enemy from my lap.

When his turn came at 7:00, he willingly joined the group.  When they started jumping, he made enthusiastic frog jumps.  When they moved to the rings, he was in heaven.  He did the repetitive exercise of swirling his body in a circle.  He had to be told to get off the pommel horse  because he was still swinging himself from side to side on it- trying to master the swing.  He asked for extra help as he perfected a headstand.  I watched his whole face light up for joy every time he did something new.  He was incandescent when the class was over.  “Mommy, it’s GOOD to be small in gymnastics!  When can I join the team?” he demanded.

What makes me especially happy for him, is that we have a role model.  “Pete”, a son of a friend of mine, is the Florida state champ for 12-year old boy’s gymnastics.  And Pete is small.  And Pete is a BOY.  And… Pete has Tourette’s.  Ray doesn’t know it yet, but he and Pete are going to be friends- soon.

Tucking the tired children into their respective beds, Elizabeth moaned about how it hurt on the bottom of her foot.   Ray looked up at me with glowing face and said “My stomach muscles are sore, which means they’re getting strong!  I LIKE gymnastics.”  They both rolled over and fell asleep instantly.

Maybe I should dust off those Olympic dreams after all.

August 19, 2010

Dear Mrs. Cameron,

Filed under: Gifted,Schools,Tourette's Syndrome,Twice-exceptional — profmother @ 11:42 am
Dear Mrs. Cameron,
I know, I know- you’re inundated with parent emails today- now that we know that you’ll be teaching our little darlings!  I hated being swamped with parents and the demands the first week of school…
 
Which is why I’m not asking you to do anything- I just want you to know.
 
I wanted you to know that my son Ray will be in your class.  Ray has Tourette’s Syndrome and anxiety disorder.  That can mean a bunch of different behaviors, and this summer, he’s been spitting.  He CANNOT control it, anymore than we can control a sneeze or a hiccup- which is to say that he can sometimes control it, but it takes away from his concentration on other things.  I have been asking him to use a Kleenex to spit into to reduce the impact on others, but he hates it.  I want you to know that he hates having Tourette’s.
 
I want you to know that the spitting has been declining, but a new one will start soon- these tics- the head jerks, eye rolling, throat clearing, etc- wax and wane.  As one goes away, another one takes its place. 
 
I want you to know that he’s very bright- stronger than Elizabeth in many respects.  So, he is not on a 504 or in special education because there is no academic impact… yet.  He’s also not in gifted because the anxiety shuts him down and to try and fail would hurt more than not trying.  We’re working with him on that.   I want you to know that I am heartsick that he is not getting services that can help him with his challenges, or services that can help him develop his significant abilities, but I that I do know how kind and thoughtful and challenging you were with Elizabeth last year, so that I have relief knowing that he’s with you.   I want you to know that he has a hilarious sense of humor that is pretty sophisticated, but tends to show it in writing rather than out loud.  He’s a brilliant kid, but he’s not going to show it off- you have to really look for it. 
I want you to know that he LOVES affection- that is private.  He HATES, HATES being the center of attention, but side bar hugs will make him yours forever.  Ignore the pulling away and the grunts.  He’s shy and anxious, not withdrawn and needs you to initiate the first move.    
 
What I want you to know is, please, please:
 1) Don’t draw attention to his tics- drawing attention to them makes it worse.  And please, please don’t yell at him or attempt to correct it- it is something that cannot be corrected. 
2) Work with me on managing its effects… sometimes, like the Kleenex trick, there are ways that he can manage it
3) Don’t let anyone make fun of him.  He’s pretty good at saying he has Tourette’s, but he really doesn’t have the self-advocacy skills to stand up for himself… yet.
 
*** What I wanted to write was, “And I will defend him if anyone DARES to hurt my baby”… but I didn’t. ***
I want you to know that he has asked that you and I not tell anyone… yet.  He’s on medication and the symptoms are less now than they were at the beginning of the summer.  He’s hoping that no one notices.  However, at the end of last year, he was almost ready for me to give Mrs. Lane a fabulous video called “I have Tourette’s, but Tourette’s doesn’t have me“, put out by the National Tourette’s Association.   He’s eight years old, and can almost pass… he’s not ready for self-advocacy.. yet.
 
I want you to know that he wants you to know, but he doesn’t want me to talk about it with you in front of others… hence the email. 
 
I want you to know that he’s such a good kid and with positive feedback, he will work his heart out for you.  
 
I’ll see you this afternoon when I pick him up from his first day of school- where we will not talk about it.  :)   But I wanted you to know…
  
Claire
Update: Mrs. Cameron wrote the loveliest note back and wanted to know more about Tourette’s and what she can do to make him feel comfortable.  We’re off to a good start!

August 5, 2010

Booby Trapped

Filed under: Autism,Home Things,Tourette's Syndrome — profmother @ 10:43 am

When we got back from our holiday, we went to open the back door, and found that the bottom door jamb of one of our double glass doors had been cracked off.  That particular door has never been able to open, and we had tried mightily in the past, so I figured it had finally cracked off.  It’s been hot and humid and things swell in the heat.

Since we are renting our house, we trekked on down to the real estate company and asked them to fix it.  The contractor came this morning- and we’re a little more anxious now.

He said that it looked like someone had tried to kick down the door and he even pointed out a muddy shoeprint on the outside of the door.

He suggested that we buy a fake alarm sticker to place on our doors and is heading back to the real estate company and the owner to tell them that someone tried to break in and broke our door.

Elizabeth is pragmatic.  ”Do we have insurance, Mommy?”… “They were pretty stupid burglars, huh, Mommy?”… “Maybe we could get a new TV if they took the old one!”… “We’ll have to remember to always lock up, now, huh, Mommy?”

And Ray is… anxious.  He is not verbalizing anything, other than laughing when Elizabeth and I laugh, but he’s collected all of his various boxes and is building.

This might look like regular messy room, but it’s his “barricade”- shortened when he had to get OUT of his room

This is a “Robot” placed in front of the back door, with a “shield” , a light saber, and is attached to a CD player that is playing “Smooth Criminal”.  The latest in Robo-Cops!

I keep reassuring him that we’re safe- that Bailey Dog, who barked her head off the whole time the contractor was here, would let us know if someone were breaking into our house.  That someone tried to break in while we were gone- NOT while we were here.  That we are safe.  We are safe.  I’m not sure who is needing the reassurance more- him or me, but Ray is doing something about it.

So, note to burglars- if you break into our house, you will be bitten by Bailey Dog, you will have to go through me to get to my children, and you will have to fight off a Michael Jackson-playing, light saber-wielding, shield-protected robot.

I feel safer now.

August 4, 2010

Ocean Family

Filed under: Gifted,Home Things,Tourette's Syndrome — profmother @ 2:04 pm

We are welcoming Zeus, Poseidon, Hera, Hermes, and Aphrodite to our lives now.  Oh, and “Tina”.

Ray has sleep issues and Ray craves company.  If we could all sleep together like puppies in a pile, Ray would be happy.  And since he has his own room, he is always concocting ways to get out of it, while we are busy concocting ways to keep him relaxed in it.  He has a white noise machine, a night light, his bed angled to face the television in the living room, and the television going with a sleep function on it.  He has every imaginable way we could think of to reassure him that he was not alone, that he was safe, that he could relax.  And still, every single night is a challenge.  We’ve tried passes (3 chances to get out), we’ve got a routine, we read to him, we let him read.  We’ve been firm.  And every night, he appears like a wraith at my bedside, crying, “I can’t sleep”.

So, for his birthday, Ray got a fish tank.  We figured that fish were fairly low-maintenance pets and that the sound and the company would be good for him.  Plus, it would give him something to focus on that wasn’t HGTV or the Food Network.  Having fish might teach him some pet ownership responsibility.  And if it didn’t work out, I figured, fish are fairly expendable.  I’ve never had fish before and have always considered them a pretty bland pet.  When something that could be on my dinner plate is next to my bed, I’m inclined not to get attached.  Not that I would eat a guppy.  But my cat could…

And since one of our family mantras is “What you do for one, you do for the other”, Elizabeth got a Betta bowl.

But we were going on vacation.  Which meant that the purchase of the fish would have to wait until we got back.  This past Sunday, we went shopping, where I learned that a few of my assumptions were just plain wrong.

First of all, fish are not low-maintenance.  Even guppies, like we got, and a Betta- all hardy fish- are finicky creatures.  They have to have the right amount of water, the right Ph of water, water conditioner, the right temperature and all kinds of other “right” things.

Secondly, fish are expendable, and cheap- but they have clear-cut personalities.  Ray named his fish after his love of Percy Jackson and his recent interest in all things Greek Gods.  Zeus, named because he is an “electric green” guppy (get it- Zeus/lightening bolt connection?) is afraid of the dark and darts around when in a panic when the light is turned off.  Hera and Aphrodite- typical girls- hang out together and do everything together.  Which pretty much means hanging out at the top of the tank together- the fish version of the mall, apparently.  I can almost hear the fishy giggles.  Hermes alternates between trailing after the girls and dashing around the fake plants.  Such an athlete!  And Poseidon is the algae cleaner fish (get it?  Cleaner of the “ocean”- the King of the Sea would be concerned about things like the environment).

And yes, that is the model of the St. Louis Arch in the middle

Thirdly, “fish” are not just “fish”.  Elizabeth’s Betta requires its own food, its own conditioner and its own tank.  Also, it drives me crazy how the word “Betta” is spelled.  It should be pronounced “Bet-ta” based on the spelling, and not “Bay-ta”- and it bothers me every time I see one of the million little jars we now have.  Her Betta is named “Tina” because Elizabeth’s tank lid is pink and she chose a pink castle for the bottom and a pink “Diva” sign that the fish likes to hang out around.  She knows it’s a male, but he’s so pretty with his purple fins, and Elizabeth likes the name “Tina” right now.  Between the name and the sign, I made the mistake of joking with my husband that clearly Tina was a drag queen, and now Elizabeth has repeated that to all of her friends.  I’m not sure what the neighbors now think about our pets…

A tank fit for a Queen…

And lastly, fish ARE a great way to teach responsible pet ownership- for me and James.  I now find myself, along with our two cats, hanging out in Ray’s room at bedtime with him, watching the fish.  Ray goes off to sleep with company happily.  Needless to say, the experiment has been a complete success- but not quite in the way that I imagined.

July 20, 2010

Not Exactly Easy Like a Sunday Morning

Filed under: Autism,Bipolar,Tourette's Syndrome — profmother @ 11:09 pm

I watch my happy, chirpy son these past few days, and I wonder how he can switch so fast from one extreme to another- how he can change his mood, his outlook and his behavior that leaves the rest of us gasping.  And exhausted.

Sunday was the day before James was to come join us.  Camp is over, which means that there is no schedule, there is no routine and there is no structure.  Which means that Ray was completely beside himself. 

My mom and I took the children to the Santa Fe Children’s Museum this past  Sunday.  It was relatively quiet, and Elizabeth was in her element- face painting- ahhh the sensuality of that activity!  Bubbles- ahhh- the sensuality of that activity!  And designing roll patterns for balls to roll down- ahhh- the intellectualism of that activity!  She waited, patiently, for her turn on the rock climbing wall, and didn’t even sulk when the place closed before they could get to her.  She played with the puppets, played with the concaves of sound that transported whispers over a huge distance.  She remembered when she made fairy houses two years ago and was deeply confused because she knew, she truly knew that fairies weren’t real, and yet the adults- the ones who knew better- were telling her to make small houses for these wee creatures.  She made them, and then proceeded to look for fairies everywhere.  This past Sunday, she chuckled at her little-girl self who didn’t recognize the line between imagination and reality.  Elizabeth had a wonderful time.

Ray… Ray stood in the middle of the room and rocked.  I have never in my memory seen him literally wringing his hands from anxiety and rocking side to side.  Rocking, rocking.  Watching, watching.  I sat down at the side and he sat next to me, curling up his arms around his head like a pretzel and rocking for several minutes.  I talked- using my chatter so that he could “see” what was around him, so that the stream of words could help him ease back from what ever abyss he was staring into.  “Look Ray, see the little girl lifting the bubble wands?  She’s got a triangle-shaped one!  It’s amazing how even a triangle shape makes a funny-shaped curved bubble!  And my goodness- I can see the albino frogs from here- they sure have white bellies, don’t they?  Do you see the balls moving down those wavy things?  That’s using friction and force when they crash into each other.  See how the two balls stop dead when they crash?  When they’re going the same speed, neither one has enough force to move the other one anywhere…” I chattered, pulled all of my long-forgotten physics knowledge off of my memory shelf and tried to reach my child.

He watched for over an hour, until the rhythms of animals eased him out of his scary place.  He watched a snake eat a mouse, and while I was grossed out, the normalness of eating, the basic necessity of eating, brought him out of his shell.  He finally interacted with the pin activity where you press all of the plastic pins in and then go around to the other side and press parts of your body against it.  It’s a very sensual, pin-pricky activity, and one that he pressed his hands in- again and again.  Talk about being on pins-and-needles…

And the next day, he woke up chirpy.  Monday, the tension was eased.  He was happy to go and get James from the airport.  His waiting for Daddy was over.  He was resistant to eating, of course (some things never change),  but he was back to “Ray”.  I, however, am haunted by the vision of his overwhelming anxiety as he rocked and rocked, wringing his hands.  He might have recovered, but I will take a little time.

July 13, 2010

Ride ‘em, Duck

Filed under: Tourette's Syndrome — profmother @ 4:13 am

Fear paralyzes; curiosity empowers. Be more interested than afraid.- Patricia Alexander, American educational psychologist

Ray is on vacation, and his anxiety levels are off the charts.  He was a dream on the car ride.  A few Tourette’s spits at the end of a long day driving, but overall, pleasant and relaxed and funny.  Who he could be.  Who I know him to be.  Who he wants to be. 
And as soon as he got here and he knew that Adventure Camp was going to begin, he started fretting.  “Where is it, Mommy?… What are we going to do, Mommy? … I don’t want to go, Mommy…. I don’t feel good, Mommy… My throat hurts, Mommy… I can’t breathe, Mommy…” At one point, I was afraid that he really would go into an asthma attack from anxiety driving him.
And the Tourette’s tics are awful- violent jerks of his head, grotesque contractions of his mouth and neck.  The spitting, ironically, has decreased, but the severity of his contractions are just awful to watch; I worry about headaches and neck injury. 
I’ve snuggled him.  I’ve encouraged him.  I’ve told him he’s fine.  I’ve told him that his anxiety is what is doing this and that he does want to go, but his anxiety (darn anxiety) is blocking him.  He can outwait it.  He can defeat it.
And he has.  My mother dropped him off at the camp today, because I knew that I would crumble and let him stay home with me- where he really wanted to stay and where I can’t have him stay- I have too much to do… but I would have crumbled.  So Mamamum did it for me.  His eyes were huge, his breathing was shallow, he was on the verge of a panic attack.  And sweet boy- he went.  He couldn’t even talk from fear, but he went.  That’s courage.  That’s strength.  When fear is closing your throat closed, and you go anyways. 
And today, he got on a horse for the first time.  He rode the horse up and down mountains- mountains that he is anxious of because of the up and down heights.  His was the only trail horse (plodding creatures that they are) that was tied to the guide’s.  But he saddled up and he went.  And he went because he wanted to be a cowboy.
He’s curious these days about his cowboy roots.  My daddy was a cowboy at times and my grandfather ran cattle.  There are Western roots in my family- roots that look very exotic to my East Coast-bred son.  He’s begging for cowboy boots of his own.  He bought a cowboy hat for his sun hat for the camp.  And last night at the playground, he practiced riding the “bucking bronco”…

 of a duck.  Hey- it worked.  He got up on the horse today and curiosity won the day.

That’s my cowboy… Fighting off dragons with the help of his white steed, um, duck.

July 7, 2010

You Just Need To…

Filed under: ADHD,Autism,Bipolar,Tourette's Syndrome — profmother @ 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”.

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