Broken but Not Beaten

This blog has been an outlet for my fears about my son's Tourette's.  It has been an outlet when I went through my divorce back in 2007.  It helped me navigate the severe depression after the divorce.  I have made some amazing blogger chicks from Canada to New Zealand.  So I feel it only fitting to share my current broken state.  And that of TheBoy and LilBro, too.

A month after the wedding of the decade, I discovered that things were not as wonderful as they seemed.  I convinced myself I was paranoid from my previous experience in 2007.  I can't bring myself to go into details here.  But the reconciliation, dating, and wedding were all done within huge lies.  A fun little kicker is I found this out after finally trusting my gut and digging - all the while feeling like I was being a bad wife by digging.  Four days after having legally changed my last name.  Good times.

So, while I am still technically married in the eyes of the state in which I live, my "husband" lives with friends.  TheMan, TheBoy, LilBro and I are all in therapy.  I am watching TheBoy spiral dangerously in depression.  He and I have gotten help both emotionally and medicinally.  But at his age (14) you heap all the normal confusion of being teen with a major family trauma and potential RE-divorce of his parents...it's bad.  His anxiety attacks that had been gone for years have undone him enough to miss a lot of school.  LilBro's anxiety manifests in a much less obvious way.  His teacher informed me that it's off the charts in the form of obsessing over time and schedules.  But he's keeping his grades up and is pretty happy over all.  He's 10.  He's still hoping dad will come back home.

Here is one reason I'm sharing this even though I haven't shared this with all friends and family yet.  If you for one second think that God had a hand in this horror show, stop right now.  If you feel any anger toward God for "letting this happen" to me?  Don't.

There has not been ONE SECOND where I've thought God did this or wondered why he let this happen to me.  I will tell you what I've told other friends and family members.

First and foremost - no matter what hell on earth may happen?  GOD IS ON HIS THRONE.  Don't think for one second that some disaster or evil proves otherwise.

Second - God had no hand in the lies and betrayal perpetrated by TheMan and another "friend" of ours.  That was all the enemy.  The prince of stupidity.  Satan, the devil whatever you want to name him.  He saw the bright beacon our family was for God and he threw something irresistible in front of the weakest member.  Not my kids.  No, he went for the new believer: TheMan.  It's what he does when he's scared that something is about to Shine for God.  He knew TheMan still had major broken wounds and he played to those.

Third - God will always lay out amazingly perfect plans for each of us.  And then each of us uses the free will God gave us to walk the path he laid for us, to walk kind of NEXT to it, to walk away from it, or to reject it altogether.  That is US, man.  We all do it.  I did it for years.  I walked close enough to God's path to fool myself that I was ok because, hey, I could still SEE it!  Granted, I had to look to the side to see it.  But still!  I could see it.  No, God always plans goodness for each of us.  And some of us don't trust it because, you know, God can't be THAT nice, right?  And some of us are broken and scarred from previous attempts by the enemy to destroy us and keep us walled off from God.  So we can't see the path.  Or we don't want to see it because some church or "Christian" or "God person" totally screwed us over way back when.  Or because something horrible was done to us that we can't even speak about.  I get it.  But it's still usually my choice...my free will.

So TheMan was given a beautiful path of redemption, forgiveness, grace, and trust.  By hundreds of people.  My whole family welcomed him back.  Some had to work harder at it than others.  But we welcomed him back.  Our church is a church full of imperfect broken people that never throws stones.  They loved our story of screwing up a marriage and fixing it.  And many of them came to what I now know was really just a theatrical sham of a "wedding."

TheMan was given an amazing gift from many people.  But the enemy kept reminding him of his previous failure.  Made sure he couldn't fully shake the shame and guilt from his actions in 2007-2010.  So his actions were all tainted by shame.  And anything you build in reaction to shame and guilt - no matter how much you want it to be true - it will come crashing down around you.  And it will DESTROY anyone close to you.

The fourth thing I will say to anyone who thinks that TheMan is hellbound: don't even go there.  TheMan is straight with God.  This I know.  His turn toward and acceptance of God/Jesus was and is real.  I know he talks to God all the time.  And I know he has talked to God about how wrong he was this time.  And last time.  So I know he's good with The Father.  This is EXACTLY what Jesus did on the cross, man.  This is why he died.  For all of us stupid selfish people that can't hold to a vow or remember a promise or think about anyone except our own wants.  For some reason, Jesus thought we were WORTH that.  And while we humans assign levels of evil to each wrong we do here on earth?  That's a human thing.  That's not a God thing.  If you have to turn away from God to do something, you've had to turn away from God to do that thing.  It all hurts God the same.  Whether you think that or not.  Doing wrong is doing something you BELIEVE is wrong.  So if you think disrespecting your husband in public is wrong and you still do it?  You're missing the mark just as bad as TheMan lying to and betraying me and his boys.  So if you're ok with being friends with abusive drunks and compulsive liars but you're not ok hanging out with TheMan because of what he did?  You're doing it wrong.

Don't get me wrong.  I am PISSED.  This is the SECOND time for me.  Having to use terms like "The first time this happened..." or "THIS time..." constantly undoes me and boils my BUTT.  Knowing that I have to find forgiveness for him?  That's hard, too.  Yah, I know the right thing to do.  But man, to have to do that AGAIN?  Now I get that passage where Jesus tells the disciples they have to not just forgive someone seven times but SEVENTY times seven times.  And I've done the math.  I'm struggling with the SECOND time.  So I doubt I'll pass the test all the way up to 490 times.  It's not fair that my boys and I got destroyed a second time.  It's not fair that I walked through a fake wedding - not knowing - smiling and feeling so elated at the culmination of God's miracle!

But I will get over the anger.  Just not right now.  And I will forgive him.  That part has already started.  But the clever prince of poo loves to just pop images of what he did into my head every time I start feeling kind and forgiving.  So yah.  I have a lot of work to do with God.  He has a HUGE miracle to pull off by putting REAL forgiveness in my heart.  And man, TheBoy?  He wants NOTHING to do with his father right now.  And LilBro feels torn and guilty because he wants to see and be with his dad but sees how angry TheBoy is.

I share this not to say "Hey look at how God's miracle was a lie!"  I share this to say God really did orchestrate reconciliation and forgiveness.  And TheMan turned it into a lie.  Not God.  But Jesus took care of this all on the cross.  TheMan just has to deal with us imperfect and enraged humans for a while.  I'm not excusing my anger and rage.  But I'm also not making myself feel bad for it.

So if you're a praying person, cover me and the boys.  If you're awesome enough, cover TheMan.  He has a hell of a mountain of therapy to conquer.  And believe it or not, I want this to end with us still married and actually HEALED and loving.  I am very painfully aware that ending may not be a reality.  I can cope with that.  It is undoing my boys, however.

I will say that TheBoy has shown no tics.  The anxiety attacks suck.  They derail him and make him feel despondent.  Watching him go from bright shining kid to this sad depressed teen...it kills me.  And really adds to my anger.

God can pull us all through this.  It's walking through the fire that sucks.  Even knowing God will get me through it.  The mire is awful at the moment.

Pissed and Praying,
Tourette's Mom

Quick Update For The 3 Of You That Keep Stopping By

TheBoy: I've noticed some eye tics. Excessive eye rolling, a little exaggerated blinking. I've noticed some stammering when he's talking. Kind of repeating partial phrases before getting it all out. I'm chalking it up to all the late summer nights and early summer mornings. I'm not concerned.

TheBoy will start middle school this year. This area of Texas has 6th grade in middle school. I think we're both a little nervous about that. But again, I know God will rock the awesome teachers like he always does.

Work: My work just had the 2nd round of layoffs last week. It was rough. I made the cut but you watch others get cut and it's just a stanky week all around. So now we are hugely depleted in terms of staff. And we still have the same amount of work. My team lost one very key person. She has TONS of knowledge and her personality is the one we all tended to rally around. She made the killer cupcakes and brought the team love. That was a painful cut. I'm happy to be friends with her separate from work. But it's very weird not to see her every day. *sigh*

Church: Our transition from pastors Kenny & Michelle to our new pastors is bumpy. The new pastors aren't in our state yet. We pray for God to rock the provision to get them here. But so far, it's not happening. I don't know if this is one of those times we'll learn to wait well or if this is God saying this is not what he has planned. Either way, I'll wait well for whatever he brings.

The transition from where I stand is not easy - on many levels. They never are. I am standing in my skin trying to figure out where to shut up and just unconditionally support and when to stand up and say, this is a problem. That has always been a battle for me. So I pray. And hope for God to show the way. I feel a need to speak up. So finding the right way to do so will be my next task.

Update on the Tourette's

A quick note to answer another wonderful TS mom, Andrea.

Yes, Andrea. I consider the TS gone. I didn't for a long time. BigBro has considered it gone for quite a while. I haven't seen a tic in, I can't even remember. His anxiety is such a non-issue, I would consider it gone, too. He will have moments of worry now and then but they seem very normal and appropriate for his age. So I'm calling that gone.

The thing I've been seeing lately is a severe distractibilty. Is that a word? I recently caught a piece of a PBS documentary on adult ADD. So many of the stories reminded me of adults in my life. I imagine many of us are running around with ADD and have no idea. I kind of think that's a good thing. But BigBro has been just off the charts distracted lately. And when I saw that PBS show with stories of adults that sounded just like him, I've been wondering. When he was diagnosed back at the age of 6 (4.5 yrs ago), she ruled out ADHD. So not sure.

I'm not a huge fan of the over use of ADD in the pediatric diagnosis world. So I'm not running to a doctor to say, Hey, do you think he has ADD? The documentary also pointed out that most ADD adults are also the ones on the creative cutting edge. They are the boundary-less cliff jumpers, of sorts. They said, most of the amazing progress in the world wasn't done by the people who stayed safely away from the edge of the cliff. BigBro is crazy creative and does many things outside the box. I'd rather leave him there. He's not unhappy. He is still unaware of any weird looks he may get. He has a good number of solid friends that I think are on their way to being amazing people.

He still has fuzzy social boundaries. But for every kid that walks away, there are about 3 that stay.

So yes, I will claim it as one of the many miracles God has done for this boy - starting from in the womb. I know God has put him here for something big. I've seen BigBro already affecting people's lives with God's love. And that may be the something big. I'll take it!

Thanks for asking, Andrea!

Growling And The Ex

Growling
BigBro has been making a strange noise a lot lately. I can't tell if it's a tic or he's just enjoying the sensation of it.

I can't describe it very well. The way I can do it is, if I close my mouth, breathe in through my nose and make my vocal chords vibrate on the intake. It's like an inhalation growl.

He does it now and then. I've noticed it every day for quite some time. Every now and then I'll say, "Hey, you're growling," or "Stop the growling." Not mean. Just kind of like you'd tell your kid to get their finger out of their nose in a matter-of-fact tone.

As we went to bed tonight, I followed him up the stairs and heard the growl. I said, "Hey, you're growling again." Lil'Bro asked why he does that. BigBro said he didn't know. I asked if it was tic-ish or if he just liked the feeling. He wasn't sure.

Lil'Bro asked what a tic was. I explained how Tourette's is a neurological disorder where the nerve signals get confused or crossed. Probably not exactly technical but it helps me to think of it this way. Lil'Bro wanted examples so I mentioned some. I tried not to list all of BigBro's manifestations - kind of hit all over the TS spectrum.

After a while, BigBro asked me to stop talking about the symptoms because it made him uncomfortable. He has told me in the past that he doesn't feel his TS until I mention it. Which I understand. But I also think it's important for his little brother to understand what TS is and how it might manifest. It's always good to have a built in advocate - even if he IS three and a half years younger than you!

So I told BigBro that I'm just explaining it to Lil'Bro and there's no need to feel like I was listing everything on HIS list of TS symptoms. He eventually joined in the explaining. Which was cool. I certainly don't want it to be a hush-hush taboo subject.

I understand how discussing TS can make BigBro suddenly very aware of lurking feelings. But I also know he can own those feelings, talk about it and be ok.

And The Ex
And on a totally separate subject, The Ex has been living nearby for just over a month now. I cannot tell you how spoiled I feel with the extra help he is giving with the boys.

But here is one weird little observation:

When I was doing this all alone - forced to do it - I did it. I mean, yah, I had days where I felt overwhelmed. Especially in the beginning. But by this third year? Our routine was in the can. I just did it. Not spectacularly, mind you. But we were all alive, relatively clean, fed and clothed.

On my own, if dishes needed doing? I did them. If laundry piled up, I tackled it (eventually). If errands backed up, I got 'em done. I could do all the shopping, unload the car and put it all away. Hey, who else is gonna do it, right?

Well, now I have a co-parent nearby. Within walking distance. He's been stepping up and helping. Suddenly, I can remember being one of a couple. Suddenly I remember how impossible it felt that I could have done the shopping and now I had to unload the WHOLE car all by myself! AND I had to put the stuff away, too?! Suddenly, one person couldn't possibly do any of the chores that needed doing - not alone!

Being part of a couple gave me this fragile-flower mentality. I see it all the time with couple friends of mine. The trash is overflowing but my friend won't touch it. That's his job. The dog can be scratching at the door, starving, but another friend won't get the food from the bag 5 feet away because that's her job. I mean, really?

But yah. Really. I was the same way. I remember thinking I would never be able to do it all by myself. And there are those that would look around my house and argue I am NOT doing it all by myself. (And I would agree.)

But let me tell you, my dainty-fragile-flower mentality? Feh! Because on my good days? (And lately, these outnumber my bad days by far) I can get up, get the school prep done, dress the kids, help Lil'Bro brush his teeth while hounding BigBro not to get distracted. I can get them to school and get to work and then kick ass to get back in time to pick them up from after-school-care. I can drag them home and whip them into homework-mode. I can make a dinner (and by "make", I don't mean Donna Reed's version of "make" - but they're alive and thriving so...), clean up the mess and put away the leftovers. I can do the grocery shopping, unload the whole car and put it all way - alone. I can run the errands. I can balance [air quotes] the budget and make all the payments. I can plan, pay for and execute all the parties. I can buy the clothes, shoes, school supplies. I can somehow squeeze 2 extra hours out of my...um...busy schedule for a birthday party for every kid my boys know. I can periodically dust (at least once a decade), vacuum (much more frequently), scrub, wipe, and scour the house. I can do ridiculous amounts of laundry. I can post meaningless jibber jabber on Facebook and blogs. I can make it to church on time with both boys in tow, contribute to the ministries there (including 'Comic Relief' and 'Official Wisecracker'), sing my brains out and get back home. I can do it. I don't need to half-ass it and whine that my partner should be doing such and such and if only he'd be doing THIS part, I'd be able to do THAT part better and all that horse hockey I used to think.

And this isn't judgment. These are all observations about my formerly whiny, selfish SELF.

When I became a single parent, I talked to God and said, "You're going to have to help me here. There is NO way I can do this on my own!" There really wasn't. It's not a one-person job.

Thankfully, my partner is the Creator of All Things. He still makes me unload the whole car and put the groceries away. But not alone.

Drilling a Relief Well

Since my last post, BigBro has had one more ginormous volcanic eruption. Again, it was a minor upset at a friend's house. This time, I had the sense to stay at the play date for just such an occasion.

Lack of sleep + life-event stress do not a good thing make. Good grief. I'm typing like Yoda.

Listening to him after this breakdown...or during it, I guess...I heard so many things that broke my heart:

• When will this STOP?!
• I don't want to FEEL this way!!!!
• This happens every DAY!!
• This will never end.
• I'm so confused!
• I don't even know who I AM!
• I don't even know what I'm feeling!!!
  

After he had blown off some steam in his room, we had a talk. He shamefully confessed that he had twisted some of his very special stuffed animals. "I wanted to hurt them!" he tearfully blurted out. It was then I wished I could hand him a big ol' bat and a hanging punching bag.

I told him it's totally ok to be mad at dad or me. It's totally ok to feel confused about wanting dad to stay while wanting him to be able to go back to his beloved Boston. It's ok to scream and want to punch things. I can sense the guilt and shame in him - thinking that all of these outbursts and negative feelings are somehow him being "bad".

I did NOT have the answers and I told him so. But God does have the answers and I reminded him of that. His faith is huge. And I'm thanking God for growing it so huge because it's what will get him through this.

When I dropped him off at school yesterday, he was down. Not pouty or over dramatic. He was probably depressed. He was low energy. He was giving people brave fake smiles. But it wasn't him. Sadness just dripped off of him.

From our conversations, I knew he thought he had reverted. He knows how awesome he's been doing with no tics, no rage and no anxiety. And all of a sudden, bam! they're both back in spades. So add to all the guilt, fear, hurt and anger the thought that suddenly Tourette's is back and taking over.

Yesterday, I called his therapist and said he needed to get in there because he was having an emotional crisis. They got him in first thing this morning.

Our play therapist, Dr.M, is awesome. He loves both boys so much. But he has that special appreciation for BigBro. Today, BigBro saw Dr.M for an hour. Toward the end, I joined them and they showed me (some of) what they had discussed.

Dr.M firstly explained that all of these crazy conflicting emotions are very hard to wrestle. And that EVERYone wrestles with them in their life. Even grown ups. So A) you're not alone.

He then explained that everyone has needs in their lives. I saw a piece of paper that had a bunch listed - obviously, they had made the list together. I saw things like "security", "attention"...I couldn't read all of it. Dr.M explained to BigBro that all of these needs, if not met, will pull on you like gravity. Except they pull your heart (ie emotions). So when a big life event comes along and these needs become greater, the heart can sometimes be over run by things like fear, anger, hurt, and guilt. I saw those written on that same pad.

It was explained better than that but that's what's in my head.

So Dr.M asked BigBro to show me how he had modeled what his emotions might look like in the sand table. Ok...wow. Firstly, I wouldn't even know how to go about modeling that. But here's what he did (and I wish I had photographed it):

One third of the sand table was fenced off and had a volcano, ambulance and eagle figure. The other two thirds had some bright shining marbles & stones, some little toy street signs (like yield, stop, arrows, etc.), a colorful moth figure and a bat figure. It also had a big wooden elephant near the fence.

The side with the elephant represented the side that held his friends (moth & bat), fun (shining marbles & stones), and direction (signs). The elephant represented a big event that happened. It was so big, it pushed him out of the fun side and into the volcano side.

The volcano side represented his isolation. He felt alone even with people around. The volcano represented his anger. The ambulance could get to him but wasn't able to stay long (he showed it sliding down the sand away from his eagle self).

I pointed to a Grinch figure on the fun side that was facing the volcano side. He said that represents how he feels like there is something watching him, always ready to mess him up. He felt like it was his guilt and other emotions that would get him when he least expected it.

It was amazing.

I told him I found it very interesting that his two friends had wings. Because his two best friends are very awesome and true friends. It made me think that their wings would allow them to fly up over this huge elephant and get to him. He looked at them for a minute and went, "Ohhh..." then picked the moth & bat up and flew them over to his eagle self. He liked that. I also pointed out that HE had wings. He liked that, too.

Dr.M drilled a relief well for my little volcano today. It's a good start, as he said. But putting words and labels on those needs and emotions was key, I think. BigBro seemed light when we left. Like, he knew what it all was now. He had identified it and named it. It's a known quantity. Takes the edge off that fear and anxiety.

When I dropped him off at school, he greeted the teachers with his usual bright, "Hi!"

I know we're not done yet. But that relief well is doing its job. It's relieving the pressure and letting God do the rest.

Keep those prayers coming.

Uncorked

BigBro is having a rough go of it this month. The boys' dad moved back to town on 09/01. He's a 5 minute walk from our house. He's not mopey and he's already helped me out with sharing the kid care almost every day.

The boys are thrilled. But...so many emotional obstacles. BigBro finally uncorked at my friend's house tonight. Huge meltdown. All of the conflicting emotions he's been bottling came flying out when one teeny thing happened. Here's what was in the volcano:

1. BigBro hesitated to show how happy he is about their dad being back. He thought it might hurt me.
2. We are letting them choose where they want to sleep pretty often. BigBro was worried if he wanted to stay with parent A, it would insult or hurt parent B.
3. He's afraid dad will leave again.
4. He's glad dad is back but knows he really wants to live in Boston. He feels bad that dad can't be where he wants to live (I personally also think he feels guilt over this).
5. He feels bad that dad gave up all his friends.
6. He feels bad that dad gave up his band, job, life, etc.
7. He worried about dad's ex-girl thing because, well, he saw what a breakup can do.

He also feels guilty for having most of these feelings. It's a horrible vicious cycle.

Tonight, the boys were at my friend's house, playing with her two boys and a few others. The Ex and I went out for Indian food - the boys are not fans. Just as we wrapped up dinner, my phone rang and my friend told me BigBro was having a big meltdown and she wasn't making any headway with him. She got him on the phone and he wasn't making any sense. He was way beyond losing it.

When we got there, she came out to meet us. He had calmed down enough and uncorked on her. I think it helped having a totally neutral loving safe person to talk to. She explained that some game had gone bad (some boys not following rules - which sets BigBro off on even a good day) and that did it. UNCORK. So that one little pinhole became the egress for all of these pent up emotions. He had communicated #4-7 to me the other night. But I hadn't know all of the rest.

The boys went home with their dad tonight. I'm hoping that goes well. He hasn't had to deal with this close up for quite a while. I wish I had them. Ah well.

But to back track - since their dad returned, BigBro has been having exaggerated blinking, his finger/hand action (Spidey Hands), shoulder shrugging, and multiple little verbal tics. His threshold for dealing with problems has dropped. He's been having little emotional explosions here and at school. One happened this morning at school.

So the signs have been there. I knew something was up. And I knew it coincided with the return of The Ex. I know it's normal. I'm not worried about this being some long-lasting thing. But I can tell you this: I'm making an appointment with our awesome child counselor on Monday.

If you're the praying kind, my boys need it. LilBro clams up. So this could all be going on in his head, too. I don't know yet.

Like I told BigBro - God is bigger than this. He'll help BigBro control his body again. Now that we know what's going on and how to counter it. Come on, God!

Pokemon Boy is TEN!

On July 5th, Pokemon Boy turned TEN. Double digits. And I have to tell you, I hardly see any signs of Tourette's. He'll tell you he doesn't have it any more. The director at his after school care recently told me that he's not on their watch list. They used to have to watch for his huge highs and lows. They say he's just one of the kids.

All of his teachers (school, after school, church) say that he's a hoot. We went to the doctor yesterday and he was so eloquent and polite, it just blows me away. Most adults that meet him are really taken with him.

Now and then, I see the fingers wiggling. Sometimes he's a bit fidgety. But there are no more anxiety attacks. There are no more raging outbursts. I haven't seen a facial tic or heard a verbal tic in I don't know HOW long.

It's still there a bit. He still says that when I mention it, he feels it. So I don't mention it.

I have to tell you, if you think prayer doesn't work, all I can say is, keep trying. Tenacity. Pokemon Boy and I have been praying about his Tourette's since we found out. I have prayed for complete healing. My church has. My family has. I'm still not giving up because there are teeny traces still there. I have no doubt that Pokemon Boy's amazing progress is all God. How many kids with an anxiety disorder have it just disappear? And during a divorce, his mom being laid off, etc. Yah, that is ALL God.

I just had to share that. My boy is ten. He's an amazing person. I have no doubt that God has some big plans for him. And overcoming this Tourette's thing is probably part of it.

Here's a shot for you. This was spring 2001. He was about 9 months old. Couldjya DIE?!

An Update For The Clamoring Masses

Apparently, my fans are upset that I haven't been blogging. And by "fans", I mean my good friend Kristen. But when my "fans" speak, I act. So Kristen, my wonderful friend? This post is for you.

An update on Pokemon Boy finds him well, sassy and tic-free. Or at least, if he has any, I'm not noticing them. I kind of feel weird if the Tourette's thing comes up in conversations. When you say, "My son has Tourette's," the reaction is usually much more severe than his illness calls for. Which is really freakin' wonderful, from where I stand. I mean, yah, you don't notice he has Tourette's? Rock on, God! But sometimes, the conversation arises and that statement must be made.

I have made an attempt to not mention it when he's in ear shot. He has told me that, when I mention it, that's when he feels like he needs to tic. He feels that urge. That itch. So, if I don't keep bringing it up, he seems happy enough to ignore whatever urges or itches the TS causes.

The one tic that has never quite gone away is that Spidey-hands thing. No matter what he's doing, if his hands aren't actively engaged in something, his fingers are moving. I wish I could video tape it and post it here. It's not a wildly flailing or conscious wiggling of the fingers. Like I said all those years ago, the only other time I've seen hand/finger movements like this are with severely autistic and mentally retarded adults when I was a teaching student in college. It seems to be one of those physical repetitive movement things that soothes or calms. Pokemon Boy never seems to notice he's doing it. I notice it when I try to hold his hand and his fingers are moving. I notice when he's playing his Nintendo DS and has to balance it on a knee to free a hand for the Spidey-hands thing. It's very minor. It's extremely benign. And if that is how his body is releasing the need to satisfy that TS tic? Go for it.

In other PB news, his stressing over his advanced placement math class seem to be gone. I really wasn't sure if he'd stick it out. Going from coasting through classes with barely an effort to suddenly having to think and work hard - that's a blow to a comfort hound like PB. We worked at it every day. He complained. I encouraged. There were days when the stress was so overwhelming for him, I wanted to just pull him. But then one day, a few months ago, I remember suddenly realizing we hadn't had any issues with it in a long time.

He doesn't come home with all 100s or all As like he used to. That was hard for him at first. His first B nearly undid him. And it wasn't a competitive anger. He was horrified at the thought that I'd be disappointed. I told him that As, Bs and Cs are completely ok in my world. We endured weeks of conversations full of what-ifs. What would I do if he came home with a C minus? What if he had a D? What if he got an F? I have reassured him over and over that, no matter what happens, if it seems like he's taken a dip in grades, we'd sit down and talk about it to figure out why. I have no idea where this constant worry about punishment comes from. I have to tell you, it baffles me. I come down hard on things like hitting or being mean or . . . I can't even think of anything. But I have NEVER ever said anything about a low grade. I've talked about them. But never punished. So I'm not really sure where this worry comes from.

Over this school year, however, I think he's finally learned that grades are just grades in our house. If they're top notch? Awesome! If they're anywhere under that and are passing? Awesome! I want my kids to have a normal childhood. I don't want them stressed because they haven't mastered differential equations in 4th grade.

I'm thrilled pickles over PB's grades. He has had everything from 100s to something in the mid 60s. The first few horrid grades came within a few months of each other. I think it was the beginning of this school year. His lack of focus meant he forgot everything. He'd leave assignments at school. He'd forget finished homework at home. At first, I'd try to call the teacher or hunt down assignments so he could turn them in on time. I'd drive homework to school for him. Wrong approach for this kid. I finally told him, you have to start remembering. We came up with routines and lists. His teachers worked with me on it. We tried everything. He kept leaving stuff.

Finally, I said, ok. From now on, it's up to you to remember your assignments. To bring them home, to do them and to get them back to your teacher. When you don't? You'll get zeros and you'll have to deal with what that does to your grade. It was hard to watch him get some really crappy grades - knowing full well he'd probably have an A+ average if I had just hounded him. So he went from getting the All A Honor Roll to the A/B Honor Roll. Yah, I know. My life's hard. But for a little kid with an anxiety disorder? This was a huge blow.

So it took a while for him to see that the bad grades were his consequences. I didn't give out any more punishments because of the bad grades. After a shaky few weeks of this, he finally started understanding the cause and effect of leaving assignments at school or homework at home. I'm totally proud to say he has hit the A/B Honor Roll every grading period this year. And he's finally ok with that.

Now, having said all that, let me update you on Lil'Bro.

Lil'Bro is doing awesome. But he's been a bit frustrated with a few things lately. Namely, any time he perceives that he could be doing better at something, he gets frustrated.

For example: Reading. Lil'Bro has no idea that PB was reading little words at the age of two and was reading a kinder reader at age 3. I will make sure that little bit of trivia eludes him as long as I can. Lil'Bro is in kindergarten. And in kindergarten, those huge differences between kids abilities are glaringly evident. All those over achieving kids for varying reasons (only kid, first kid, competitive overachieving parents, true genius, whatever) can make the average right-on-track kids feel like they're behind. I had just assumed Lil'Bro was happy with his progress and didn't really ask him about it.

So the other day, we're watching TV and that "Your Baby Can Read" commercial comes on. Don't get me started. I can write an entire series of blog posts on that kind of early education. But as a service to humanity, I won't. Anyway, he watches that and sees these babies reading. He turns to me and asks, "Why didn't you get that for ME?!" I was like...what? I said, "Honey, you weren't interested in letters or things like that. You were interested in crawling, walking, climbing and running." He flatly stated that I should have gotten that for him and resumed watching TV. That exact conversation due to that exact commercial has happened about 4 times now. Gah.

He has also been frustrated with the fact that he isn't Tony Hawk on his skateboard. He's upset that he can't ride a bike yet. The bike thing is all me. We rarely have the time and I rarely have the back muscles. I need to rent a dad to come teach both boys how to ride their bikes.

Anyway, as my mom pointed out, it's awesome that Lil'Bro wants to excel. I think I have sold him short for many years. I saw PB as the cerebral one. I saw Lil'Bro as the physical one. I remember joking years ago that PB would be the NASA scientist and Lil'Bro would be a famous stunt man. As it turns out, Lil'Bro is a budding engineer. He wants to know how everything works. He builds and takes apart. He loves books on how things work. He loves TV shows on everything from Pluto (which is still a planet in THIS house, thank you) to dinosaurs to robots to space to the Bermuda Triangle (although that last one scared him this evening). The kid is bright. Extremely bright. I probably would have picked up on that much earlier had I not been so engrossed in his older brother's combination of Tourette's and genius.

Ah well, I will never win Mother Of The Year except in the eyes of my boys.

I was informed by PB this evening, as I put both boys to bed, that I am the best mom a boy could ever hope for. Or something to that effect. I think I was leaning on the bathroom doorway, waiting for Lil'Bro to finish up and had just let out a big tired sigh. Does PB have timing or what!

American Idol 2010

I haven't had time to watch American Idol this season. I generally don't like the initial auditions as I think there is a huge level of disgusting exploitation of some very sad and needy people. I can't imagine how I'd feel if I watched one of my kids get reamed by those initial shows.

Having said that, every now and then, the producers get it right by focusing on someone exceptional. A friend turned me on to the fact that a kid with Tourette's made it through to Hollywood. Tonight, I finally had the time to Google it and found some video of his audition.

If you missed it, Dave Pittman wow'd the judges at the Dallas auditions. Whether or not he has Tourette's, he's good. Now, I just hope he's judged fairly and doesn't get voted through out of pity.

The point they keep making is that his tics totally disappear when he sings. This is very common, actually. I wish I could figure out the brain. But it seems that when most folks with TS are focused on something they love, the tics are minimized or disappear altogether. In the video, I do see some facial tics when he's singing. But they are minimized significantly.

His facial tics and clearing of the throat give you a good idea of how Pokemon Boy can look at times.

I love seeing people with Tourette's have a good shake in the media. Dave seems like a good kid. He's talented. He's also giving a good face to Tourette's. I hope he does well.

Tourette's: To Tell or Not To Tell

A new blogger friend over at Tea & Tourette's just asked me a really good question. I thought I'd answer it here in case any other Tourette's family would find it useful.

The Question:
"Do you / your son / his teacher tell the kids in his class about his TS? My daughter's teacher has suggested we do but I am reluctant until we get advice about everything as we know nothing! We live in a small country town so there are support groups, etc. Any advice for us starting on our journey please?"

My Answer (and I'm never short winded):
This is a tough one. I can tell you what we've done so far and why. I certainly won't tell you that my approach is The Way. It's working for us right now. But you might find a different approach is better for your family.

One suggestion I have is to rent or buy the HBO documentary I Have Tourette's But Tourette's Doesn't Have Me. You can see more about it here. If you Google it, you'll find lots of places to purchase and probably watch a lot of it (I saw YouTube in my Google results but didn't go check it out). I would watch this first before deciding whether to share it with your daughter. I showed it to my son when he was about 7. I wasn't going to show him as I was concerned that some of the more severe cases might make him think that this must be how it will be for him. But he found it on our DVR and asked to view it. So I watched it with him. I think it helped him see that he's not alone and that Tourette's can look so different from kid to kid.

The reason I'm suggesting you watch it is, there is a kid in the documentary that has TS. But during the documentary, you'd never know it. He mentions that he's on meds. But he also chose to share Tourette's with his class. He presented it to his class and allowed them to ask questions. I thought it was a very bold move. I also imagine it fostered a lot of tolerance through information.

Now, what I decided to do with my son is different. Pokemon Boy's TS has been very mild in terms of physical tics. His tics are generally rare enough and small enough that no one really notices them. His anxiety and social issues are the bigger factor to me. But so far, he has blended into normal elementary school life (now in 4th grade) normally. There are some kids who label him "kind of weird" or "different". But he has friends and is pretty well liked and respected in his classes.

I inform all of his teachers and care givers (like summer camp care). I explain the severity (or lack there of) and what they might encounter. I actually don't even like doing this much. Because I feel it can label him and give his teachers expectations. I was tempted to just send him without informing anyone to see if they even notice. I've seen other kids his age that have similar social or emotional issues and they're not diagnosed with TS. But, to be fair to his school, I always inform them.

I have always asked that his teachers keep this information confidential - meaning from the other students. Pokemon Boy is a typical 9 yr old and hates being singled out in any way he finds embarrassing. Since his TS is so mild, I have kept to this course of action. In the back of my mind, I have always thought that, if his TS escalates enough where it begins to affect his socialization, I would encourage him to present his diagnosis to his class like the child in the documentary did.

Now, having said all of this, I don't know if I'm making the right decision. As he gets older, I will most likely present the idea to him of sharing his diagnosis with his friends and classmates. Some of his classmates just think of him as Pokemon Boy. He's silly, very smart and LOVES Pokemon. But I heard one little girl just today refer to him as "one of them." She had been talking about Pokemon Boy and another little boy that goes to their school. I don't know his diagnosis but I do know that he has some kind of emotional issues that affect his social signals and ability to control his actions. Children don't need to know an official diagnosis to know that something is different about someone. Pokemon Boy and this other little boy both have times when they blow their tops. They get upset over some things that don't bother most other kids. And they also let things slide that other kids might go ballistic over. Most kids will have tantrums now and then. But when kids with emotional disorders blow their stack, it's often a bit different. And other kids tune into that difference.

So there is a part of me that thinks, in a perfect world, if Pokemon Boy was able to work up a presentation that was informative and honest, his classmates would all understand him better and be more patient, more accepting. But I also know that there are a few kids that will use this information as a weapon. Any time they feel like pushing his buttons, that's what they'd go for.

Like I said, I don't know that I have taken the perfect stance for us. But it feels right for us at this moment. I take my cues mostly from my son. If he was excited about sharing, I'd be working with his teacher and counselor to have him present to his class and maybe other classes. It's a subject I will probably bring up with him now that I've thought about it and actually put my answer out here in writing. If he decides to take a different path, I will definitely write about it here.

Oktic, my email is in my full profile. If you ever want to ask me anything offline, email me. I'll share just about anything. If you want to ask here, I'll answer here, too. I hope this has helped.

I know you're in another part of the world but the TSA-USA.org website is very useful [I read through almost the whole site within the first 2 weeks of his diagnosis!]. Pokemon Boy enjoyed reading their online news letter written by kids with TS for kids with TS. It's called That Darn Tic. I think it helped him realize he wasn't alone and there were other normal kids out there just like him. Take a look and see if it's something you could share with your daughter.

I also got a lot of books from well meaning relatives. I tried to read each one at first but it overwhelmed and depressed me. Sometimes, the more I read, the more fear that grew in my head. What I did with Pokemon Boy was I just left the kid-level books around. I didn't force them on him. I left them with our other books and one day, I walked in to find him reading them. Sometimes he'd talk about it with me. Sometimes he wouldn't. I would ask about it if I saw him reading it. But I always took my cues from him - whether he wanted to talk about it or not.

Some books he has read:
Hi, I'm Adam
Adam and The Magic Marble
There are way more but those are two I know he read all the way through on his own.

Also, Pokemon Boy is a hugely generous and loving kid. If your daughter would find it useful to write him letters or emails, let me know and we can exchange info. I think he'd really like that. I imagine he'd answer almost any question she might have. And he'd be honest. If he didn't know, he'd say so.

Let me know how I can help.

- Tourette's Mom

End Of Summer: Blah

So we're almost at the end of summer. Or, depending on the measuring stick, we're DONE with summer.

I took the summer off to hang with the boys. I doubt I'll ever get a 22 yr severance package again. So I pushed my luck and took the summer off - meaning, I didn't look for work. I also kept the boys home from summer camps or day care. So right there I saved myself a good $1300+ a month. I have never been able to spend a whole summer vacation with my kids. So this has been worth it. Pushing the envelope or not. It was worth it.

I started looking for work two weeks ago. So for me, summer ended two weeks ago. Sadness. But oh well. It's been awesome.

And in one week, my boys will head back to school. Pokemon Boy will start 4th grade. Lil'Bro will start kindergarten. Pretty cool. They'll be in the same school but probably won't run into each other. Kinder is downstairs and 4th is up. Their lunch times and recess will be pretty far apart, too. But the knowledge that big brother is there will no doubt help Lil'Bro.

So, as the school year approaches, a part of me wonders how Pokemon Boy will do with his anxieties during this school year. Since he's been back in day care these past two weeks, he's only had a couple of meltdowns. But each one reminds me that the anxiety is still there. And I've noticed a bit of an increase in his facial tics. Nothing horrid. Just the exaggerated blinking, a few head rolls, some shoulder rolls, some suddenly widened eyes. In the grand scheme of Tourette's, these are minor and I know how lucky we are.

I think the increased tics are just stress. He likes day care generally. But he's in the "school aged" group. So ages 5-11. And those older kids, man, they push the limits for me sometimes. Girls are emotionally brutal and boys are physically so. He generally finds nice kids to hang around. But inevitably, there's a clash. And I can't fight it for him.

Recently, a boy at school really taunted him. I was told by another teacher that this boy has some kind of disability. I don't recall what kind. But apparently, he is not always in control of his language or emotions. This was actually explained to Pokemon Boy. He told me he wasn't really mad at the boy since he knew the boy couldn't help it. But it still embarrassed him. We talked about it for a while. During the conversation, I pointed out how hard it is to be "different" at all. And maybe that boy gets a lot of flack from other kids. Or worse, maybe he's ignored. So Pokemon Boy said, "Yah. I have trouble with my anger sometimes. So I know what it's like." We talked about how maybe that boy just needs someone to keep being nice to him. Pokemon Boy went back to school resolved to be nice to him. To make sure he had someone who didn't ignore him or dismiss him as weird. I was pretty proud that he was able to make the connection - to empathize with a boy who might be treated differently because he can't control his emotions. There may be more conflict. But at least I know Pokemon Boy will try his best to give that kid the benefit of the doubt.

This Friday, we find out who the teachers are. Then it's back to school. I'm sure God will rock good teachers for both. And an awesome job for ME!

Tics and Such

It's been a while since I've posted on this blog about Pokemon Boy and his Tourette's. Which is awesome, actually. Because that means there is nothing really to report. As I've stated before, he thinks of himself as Tourette's-free. I like it that way. No fear or self-fulfilling prophecy to live into. When I talk about it, I try to do so when he can't hear me.

The Ex was just here for a visit with the boys. He was here for about 10 days. They spent almost every night with him in his hotel room so it was a much closer visit than previous ones. They spent most days with him, as well.

Over the last few days, I noticed a few little facial tics. Just the exaggerated blinking, bulging of the eyes quickly or rolling them up and to the side real quick. The Ex and I were talking about it but I can't peg if this started during his visit or not. I tend to not notice these tics unless they're really bad or just more frequent. So I'm not chalking it up to anything other than he's off his schedule or over tired or who knows what.

At times I think I should keep a journal like I did in the very beginning. But I feel like, when I do that, I'm putting too much energy in something that isn't really a problem. If his tics ever escalate, maybe I'll return to the journal. But for now, he's not worried about it so neither am I. We still pray about it when it rears its head. And God has kept his so incredibly mild. I'll keep my trust in God.

Oh, and as Lil'Bro has passed the 5 yr mark (when we first started seeing things from Pokemon Boy), we haven't seen anything Tourette's-like from him. I'm not really thinking we will. But you never know. Genetics are a strong player in this world. I won't worry. But I will keep an eye and ear out as he gets older.

Anyway, just thought I'd update you all since this is, after all, a blog called Tourette's Mom!

PokemonBoy

Lil'Bro

Year Three: Hardly Any Tics!

Man, does God rock or WHAT!



Three years ago this month, Pokemon Boy was diagnosed with Tourette's. As with any diagnosis, your mind immediately jumps to the worse case scenario and your heart breaks.

We have attacked this diagnosis with prayer first and close monitoring by his doctors, therapist and teachers second. As I've stated in many previous posts, Pokemon Boy hardly has any physical tics. Most of his issues revolve around his anxiety issues and difficulty controlling his frustration and anger. And that last bit is pretty much something I still wrestle with so I'm not willing to lay it at the feet of Tourette's.

Today, we had a parent/teacher conference with Pokemon Boy's 3rd grade teacher. She came in around the holidays after his initial 3rd grade teacher "retired" with no notice. This replacement teacher has been an answer to prayer. She is awesome. She is very present and cares greatly about each of the students. The initial teacher seemed to be going through the motions and appeared very overwhelmed. So yay God!

In the conference, Ms. Rockin' Teacher told us (Pokemon Boy was there, too) that she hasn't seen any tics except maybe the one where he shows his top front teeth every now and then. I have to agree. That's about the only one I see. And it's quick and not very noticeable.

Also, his anger issues and meltdowns at school have been getting better. He doesn't seem to have a "nemesis" at school or at church any more (usually a girl with whom he feels competitive). Ms. Rockin' Teacher suggested that Pokemon Boy work on creating a tool box of tricks over the summer. Little tricks he can employ when he's feeling the frustration or anger get the better of him. One that he already uses in gym class is, if he starts getting angry or frustrated, he goes to get a drink of water. His gym coach suggested this one. So Ms. Rockin' Teacher suggested he use that in her class as well. So over the summer, we'll be working on things like that.

She really encouraged him. She told him that she feels he has the skills and tools to enter 4th grade and be very successful.

But the fact that physical tics are what clued us in to the possibility of Tourette's and now there hardly ARE any? That's purely God right there, man. Three years into it, he's at the age where symptoms can really start escalating. But he's not stressed about it. And neither am I. We both figure God's got it. No matter how it goes from here - God's got it.

Tics and The Power Of Prayer

I know there are plenty of people that think I'm nuts for counting on God or prayer to stave off Tourette's and its spectrum of manifestations.  Truth be told, if anyone had told be prior to 2005 that I'd really be counting on this kind of faith to counter "real life" issues that don't seem spiritual?  I probably would have thought they were nuts.  But here we are.  And here I am.  Too much direct intervention from God has happened in my life for me to turn back now.

Blah blah blah.

I just find it very interesting that, since my February 19th post, Pokemon Boy came home - almost the next day - telling me how he has felt more tics at school.  Here's a Feb 23rd email I sent to my closest friends and family asking for prayer.  Just easier to copy it here than to try to remember it all.

[PokemonBoy] has been having some facial tics develop over the last few weeks.  Most are pretty minor and unnoticeable.  But he told me tonight that he thinks he had some tics at school (most of his tics are under control while at school).  I asked him to show me.  They are all facial tics involving the mouth and cheek muscles.  The three he showed me today would be pretty noticeable but nothing too bad.  They are all hard to describe without seeing them.  But the main one I see lately is just a quick upper lip thing that exposes the top teeth very quickly.  It's usually combined with a quick crinkle of the nose too.  The other three all involved opening his mouth real wide, clinching his facial muscles and touching the sides of his face.  He told me the sides of his face felt hot (which they didn't to me).

Anyway, [PokemonBoy] has been virtually tic-free for a long time.  Since the 2006 diagnosis, I have really put this in God's hands and continue to do so.  I'm coming to you guys as my prayer warriors.  You have prayed [PokemonBoy] through his kidney stuff.  You've prayed me through my divorce.  I know you'll pray with me on this one.  Pray how you're lead but I have been asking God for the following: 

• total healing of the Tourette's
• [PokemonBoy] to be able to control his body
• peace so [PokemonBoy] doesn't worry about this
• good true friends that will always accept [PokemonBoy] no matter what
  

As you know, [PokemonBoy]'s Tourette's is amazing in how mild it is.  Please pray with me that it remains that way and actually completely goes away.  Most of the documentation shows that the majority of Tourette's cases are diagnosed around the ages of 8 or 9 - mostly because this is when it escalates enough for people to say, ok, this isn't just normal.  I'm trying not to pay into that belief but I will admit that it scares me with him being 8 1/2.  So prayer against giving in to that fear would help, too.

After sending out that email, I also started praying against it all with him.  Our nightly prayers usually consist of me putting my hands on him and addressing anything on our minds.  When it's prayer for healing, I always make sure my hands are on him.  I'm lucky that he also takes this very seriously.

So here we are on the 26th.  And I haven't seen any of the facial tics today.  Not even the most common one where he bares his top teeth.

I'm still all over this.  I don't believe in fast-food prayer.  Well, that's not true.  I do it all the time.  The quick once or twice prayer and then I forget.  But certain things, I am persistent.  This will be one.  This has been one.  And God will get the glory.  I have no doubt.

Just wanted to share.

What's This Blog About Again?

Oh that's right. I have a son with Tourette's.

You know, I have to smile when I realize I hardly ever post about Tourette's. This means that Pokemon Boy hasn't been manifesting TS much. At least, not in a physical way. And most of his issues related to his anxiety disorder are the kind of anxious foibles most 8 yr olds are dealing with. Maybe his are a smidge higher up on the drama scale because of personality, living with divorce, having a bad day. It's hard to say. And I am loathe to chalk every action or reaction up to "Oh, that must be the Tourette's."

But I thought I'd give you an update on how he's doing.

Pokemon Boy (aka: The Litigator, Mr. Attitude, The Certified Genius - all depending on the day and who you ask) has been having some physical tic-like things lately. God rocks. And I say this because his tics are nothing in the spectrum of what could be. I think I mentioned this in an earlier post. He has most of his repetitive actions happening in the face. The mouth, mostly. Right now he does this thing with his lower lip that I can't even do. Like, have you ever flipped your lower lip way down (I have to use my hand to do it) so that the inner part of the lip is showing? Does that make sense? Well, PB can do it by sticking the lower lip out and doing a smiling motion. And it just flips his lip down. Then he pops it back into place. It all happens in just a few seconds. But he usually does this quite a few times in succession. Maybe 3 or 4 times in a row, just a second or two apart. The other mouth thing has been less this week. Man, it's really hard to describe these things in words. And you know what? I can't. I'd have to post a video showing you and I don't feel like doing that in case he looks at this. But it's almost like he quickly bites the insides of both cheeks and then slowly pulls the cheek muscles back to normal. It's very quick and repeated a few times in a row.

Those are really the only things I notice. I actually think the lower lip thing resulted from some bad winter chapping of the skin right below his lower lip. I think it morphed into a repetitive motion for him. Last night he did it quite a few times in front of me and it was rather noticeable. So I just asked, "Hey, what's with the mouth? Anything going on?" He just said no and that was it. Sometimes he'll take that opportunity to tell me how it feels or if it bothers him. So this must not bother him. And that's great.

That's the physical. Like I said, not much. By itself, it's nothing you'd even really think about. So thank you, God!

Emotionally, I'm not really sure. He has a lot of anger lately. Some of his recent behavior reminds me of kids I've known that are more like 12. You know, that surly preteen stuff that signals, "Oh boy, here it comes." I told my mom, man, if this is any indication, the teen years are gonna be a LOT of work. But I refuse to pay into self-fullfilling prophecies. Nothing HAS to be. So my mom and I have started attacking this with prayer. I'm just asking God to show me what the anger is from. Show me what he needs. Show me how I can give him what he needs. I don't know if he just needs a guy around. He really thrives when men visit and spend time with him. I don't know if he just needs to be outside running himself ragged more. He and Lil'Bro are rather addicted to screens (TV, computer, friend's video games). But even when they're not doing screen time, they love indoor play. And as a single mom who is usually working, it's hard for me to take time out to get them outside. Our area is safe but not enough for me to send two little boys outside by themselves to play in the neighborhood. Or maybe it's the whole divorce thing. You just never know when and how that hits. So often he seems fine with it. And if that IS his issue? He's not saying so.

The good thing here is, last month, he asked to see his play therapist. Since I just got my severance check, 'tis time to make an appointment.

My never ending question remains: When do you chalk behavior up to a kid being a kid and when is it their bigger diagnosis at play? Thankfully, I don't really need to know. I just keep asking God to show me.

Oh, and here's a nice little example of Mr. Surley Pants: yesterday, I took some of my savings and bought an iPod Touch. It's not the phone. It plays music, videos, accesses the internet and has a ton of fun free games you an download. So I brought it home and downloaded lots of kids' games. When PB got home, I said, hey I have a surprise for you. And I showed him the iPod and told him I'd share it with him and Lil'Bro as long as it didn't get fought over and they asked permission, etc. He immediately set about learning it (faster than I did). He loved it. But suddenly he was calling it HIS iPod. Asking, "Where's my iPod?" There were comments made about how he wouldn't be sharing. It was really really odd. At first I thought he was just joking. But he was dead serious. At one point, after a particularly snotty exchange, I told him, "You know, I have 30 days to return this for a full refund. If we butt heads over this, it will go back and I won't even bat an EYE!" He was mellow for the rest of the night. But this morning, our school-ride buddy showed up and he said, "My mom gave me an iPod." I was all, "Excuse me?" So at this point, I really am thinking I don't need such a decadent toy and I might just return it. And this is definitely making me rethink the possibility of getting him a Nintendo DS hand-held gaming system for the end of the school year (if he gets all A's the whole year, which he's on track to do).

This is an interesting ride.

Tics and Stuff

I've been meaning to post about this for a while. What with the title of my blog being Tourette's Mom and all.

Pokemon Boy - if you recall - has Tourette's. Mild. Blessedly mild. Thank you God! I'm still not worried about it. I suppose I could be since he's approaching 8 and most kids are diagnosed around 8 or 9 because that's when it progresses to a severe enough point for people to stop writing it off as just twitchy kids or something. But I'm not. God's got it. And God's given us a great medical/therapy team.

Anyway.

Lately, Pokemon Boy has been very tic-y. Still mild. A fact that was driven home hugely this weekend when we were in a local sandwich shop with a kid that looked to be about 13 and had very severe TS. But though Pokemon Boy's tics are all mild, they are many. Usually he has one or two. I will probably not be able to remember all of them right now as he's not right here with me. But here's an attempt at a list of currently active tics:

1) A new eye thing. This is like if you scowl every so slightly and then very slowly let your eyes drift upward and then to being crossed. Does that make sense? I can't even do it if I try. I can't get my eyes to "drift" into being crossed. But I've watched him do it and then they pop right back to normal. I'm not even sure if he knows he's doing it.

2) A new noise. I was just trying to do it to describe it to you and I can't get it quite right. It's another tongue clucking thing. It's usually quite a few in succession. And it's on and off for quite a long time. I think he does it with his mouth closed sometimes, too.

3) Stammering. This is an extremely eloquent kid. Has been since before he walked. But lately, he's stammering almost as if trying to talk under duress. I keep saying, "Slow down and just let it come out." He usually can but rarely without repeating a few phrases in each sentence.

4) Touching. I've noticed a few things where he touches his own hands or feet here or there. I can't tell if it's really a tic or allergy related or what. But it's repetitive enough to make me think it's a tic.

5) Restlessness. He's very antsy. It's the stuff I usually see when he's unsure of his surroundings or if we visit a new doctor or something. The first time his psychiatrist met him, she said his initial can't-sit-still-ness made her think ADHD. But she dismissed that idea very quickly. But I notice he's up, he's down, he's pacing, he's moving, he's all over the place.

That's the stuff I can think of. I think there are a few more verbal tics I've heard recently but I can't recall what.

I've also noticed that all of this is coinciding with the news that his dad is leaving soon. I have no idea if that's really what's going on or what. But I can tell his mind is going a mile a minute. The other night, after a particularly bad day on my part, he was telling me he was sorry for my aggravation during the day. I said, oh honey, you don't have to be sorry because I was in a crappy mood. But he said he just felt bad that I had felt aggravated (he used that word). I thanked him. He left the room and came back to tell me that he liked spending time with me. He told me that daddy gets more aggravated with them more often than I do. It was said with a lot of tenderness and sadness. But obviously, the man is very much on his mind.

Today, we were all home. We had a very sleepless night due to allergies and both boys having nightmares or night terrors. When I woke up at 6:15am, I tried to wake Pokemon Boy. Nigh impossible. And I felt like I had been run over with a hippo. So I decided to let us all sleep in and take him in late to school.

Being the wonderfully irresponsible lazy mother that I am, I let them both stay home from school and I canned work. We all looked like we were hung over. I still feel like it. They recovered somewhat, after staying indoors away from allergens all day.

Well, after lunch, I told the boys I was running to the mailbox. We have community mailboxes in each 'hood. Mine is right around the corner, within earshot but not eye shot of the house. Both boys were mired in their respective activity and heard me announce my departure. Well, at the mailbox, my next door neighbor pulled up and we got to talking (us two divorcees). I was probably out there like 5 or 10 minutes. Suddenly, we heard the weirdest sound. It was either an animal in distress or some sort of weird guttural cry. I knew instantly who it was. I ran around the corner and found both boys in the front yard. Pokemon Boy was crying and on the verge of panic. Lil' Bro seemed totally ok but he was clearly freaked out that his big brother was upset. I ran over and started comforting him. He hadn't known where I was. "But I told you I was going to the mailbox." Yes, but I didn't come right back so he didn't know where I was. It totally broke my heart.

So I vowed to him that, if I step out for some quick little neighborhood errand, I will do it and return immediately. I will only stop to talk within eye shot of the house. Better yet, maybe ask them to walk to my yard.

Over the last few days, if I get annoyed or frustrated, both boys are lightening quick to offer apologies. Even if they aren't the cause of my annoyance. It's really sad to hear. I don't really understand how to undo that. They are carrying some fear here. Tonight, Lil' Bro wouldn't stand still for pajama time. I snapped at him (but not horribly) and he reacted as if I had just screamed at him. I said, "Honey, I just want you to stand still. I'm not yelling." His reply flabbergasted me. "I just don't ever want you to kill me." Um...what? What in the WORLD?!

All I can think is, the security of their world has been frayed. And some very serious fraying is happening right now. That's all I can think. I stopped both boys, made them sit and look at me. I said, "Let me tell you a few things that will NEVER happen: One: I will NEVER stop loving you. Ever. It's not possible. Two: I will never hurt you or kill you. It's not possible. It will NEVER happen. Do you understand?" Lil' Bro then said, "And free?" "And three: I will ALWAYS love you," at which time Lil' Bro threw his arms around my neck and hugged me. And to which Pokemon Boy replied, "Um mom, you said you were going to name things that will never happen!" *sigh* I can't win!

I'll leave you with some cute pix. Last night, Pokemon Boy was showering in my shower and Lil' Bro was bathing in my big garden tub. I took a bunch of silly pictures but promised Pokemon Boy that no nudies would be shared with the public. But I think he'd approve of these three shots.

Lil' Bro and the obligatory Bath Time Mohawk

Classic Pokemon Boy

Classic (Dorky) Me

Pokemon Boy and The Sub

In the documentary 'I Have Tourette's But Tourette's Doesn't Have Me', one of the kids says something like, "Tourette’s and substitutes: a bad mix."

Pokemon Boy is in the middle of 2nd grade. His teacher adores him. She understands him. She extends great patience with all of her students. She has a soft but firm hand with them. In his whole 2nd grade year, he has gotten perhaps one note home. She had to ask him twice to push in his chair. Scandalous. But that's Pokemon Boy. At school he is very eager to please. He loves learning. He has been every teacher's dream so far. He's a bit distractible - what 7 yr old isn't? I don't even chalk it up to the obsessive compulsive tendencies diagnosed as co morbid with his Tourette's. He's just a normal kid.

Well, Wonder Teacher left last week (when I was traveling) to have her baby. Yay on the arrival of Teacher Wunderkind. But I'm a bit concerned about the "long term" sub. This week, Pokemon Boy had three notes home. THREE. For minor infractions. Once he was singing during a quiet activity (he does this all the time - he usually has no idea he's doing it). Once for talking to a classmate in stead of completing the task just given by the teacher. Today it was for...good grief...I can't even recall. It was equally as small. But I do recall it boiled down to him needing to do what she asks, when she asks it. I have a feeling that their normal teacher allows for slips because she knows the kids. She understands the boundaries with each one.

I explained to Pokemon Boy that the three notes home do NOT mean he's a bad student (he cried for about 10 minutes when he got home and "confessed" to me). I told him the New Sub is just trying to set the rules and might be a bit heavier handed than Wonder Teacher because New Sub doesn't know them. I explained that New Sub doesn't yet know how great Pokemon Boy is. Once she gets to know them all, I'm sure it will smooth out.

The interesting thing, however: today he had a new audible tic. Brand new and very pronounced. It was a twist on one I've seen before. It's hard to describe. It's like a hard "th" sound but there's a flick of his tongue in there. And his cheeks puff a bit. He didn't even know he was doing it. Or maybe he did. I'm not sure. I noticed a few more soft grunting noises. The eye blinking was absent. Oddly. That's usually first.

For the last few weeks, he has been having anxiety episodes - I don't want to say "attacks". They manifest right after he's eaten. I'm still not convinced these are purely anxiety. I think they started out as true reactions to crappy fast food. But I'm wondering if his anxieties caused those same symptoms at other times. He gets incredibly worked up each time. He asks me or whoever he's with to go to the bathroom with him because he's convinced he'll throw up. I've pointed out lately that, in all the times he's felt like this, he has never thrown up. But he's convinced this time he will and he's all crying, shaking and panicked. It has happened almost every time we've gone out. At different places. Different foods. The last time it happened before my business trip, I almost lost it. Sounds awful, I know. But I was tired, emotionally drained, totally stressed. My parents took us out to dinner. Two bites into my food, he starts. "Mom! I have to go! I'm going to throw up!" and the crying starts. I wanted to chuck my whole plate of food across the room and scream at him. But I went with him and tried to calmly reassure him that he'd be fine if he can just get a handle on how upset he was getting.

I left for a week and this scenario was repeated with my parents. With my sister. With my brother-in-law. I felt so awful. It's very hard to know what to say to him. It's very hard to keep your patience.

My mom had success with getting rather firm with him. She recognized one particular instance as pure anxiety. So she had to get a bit firm with him and tell him to calm down. She said it really worked. Tonight, we went out with future ex. Sure enough, 3 bites into my salmon, he has to go. He's gonna throw up. But - thankfully - he wanted future ex to go with him. I selfishly wolfed down my food while they were gone, assuming I might have to do round two with him next.

They returned from the bathroom and future ex was surprisingly Zen. I knew he was annoyed but he kept it to himself. When we left the restaurant (Lil' Bro asleep in my arms), it hit again. Pokemon Boy started panicking and crying - he was going to throw up. I piled the sleeping Lil' Bro into his seat, buckled him in and talked to Pokemon Boy. I reiterated that he has never thrown up to this date. I went over how things worked while I was away - how Grandma got him to calm down that one time. How I knew he could do it again. I explained that his panic is making his muscles tense up and might be adding to whatever GI distress he might actually be having.

Once in the car, he worked very hard to calm down. I was impressed. He did it. We had a nice drive back to future ex's house. I don't really get what this is. But it clearly is related to anxiety or panic. I don't know if it's tied to the stress at school. With my travel and the New Sub, who knows. And I'm sure eating at home would benefit us anyway.

Just thought I'd give an update on Pokemon Boy.

Tics, A Rant and A Meme

TICS:
Interestingly enough, the holiday stress doesn't seem to be getting to me this year. At least, my conscious self tells me that. I wonder if my subconscious would give a different answer. I'm wondering this because I've noticed the return of some of The Boy's facial tics. Nothing major but the fact that they're there is noticeable simply because he has been sans tics for so long. Is it second hand stress? Is it the approaching holiday vacation? Is it the TS starting to take a stronger hold as he gets older? In all honesty, I'm not that worried about it. But having just revisited my post from this time last year about how his tics increased in the presence of stress, it just makes me wonder. [And Maureen, if you're visiting again, I love your comments on that post and would love to chat w/ you more. Feel free to email me via the link in my profile!]

I've just noticed in this past week, quite a few facial tics returning. Exaggerated blinking but not as bad as previous times. A few facial movements that seem to go with his blinking. Again, nothing horribly obvious. But I see it. With my dad's hospitalization and a few late nights due to Christmas festivities, who knows. Maybe it's just that. We'll see.

A RANT:
I'll keep it short. Because if I don't, this will become a 5 page tome. But here is my gripe about future ex. And keep in mind that this comes on the heels of weeks of getting along wonderfully with him.

Winter break, the kids get 2 weeks and 2 days off. I was able to take one week plus 1 day vacation. The other week would hopefully see the boys with their dad. I'd prefer to have them with me but time with their dad is important, fair, and also legally suggested. The divorce decree (no matter what details we are hammering out) is pretty unchanged and clear about that. Most major holidays will be split. Well, a few weeks ago, future ex informed me he couldn't take them as he couldn't get the time off from work. No problem. They'll stay with me and have to be bored while I work. But they'll be safe and not stuck in some weird day care where they don't know anyone. I'm fine with that. So is future ex.

Fast forward to a couple of days ago. Future ex informs me he will be taking that 2nd week of the winter break to visit his girl thing up in her state. He couldn't get time off to take his boys. But apparently his work was ok with him taking it off to have a week with his girl thing in a totally different state than his boys. 'Nuff said.

I have mercilessly ridden his butt on this subject. Most other infractions, I say my piece and leave it be. Not this one. This is anti everything he ever believed in. So I have not relented on pointing out this really big bone-head dad move. He's feeling pretty rotten about it. But not rotten enough to cancel his flight. And in my book? That's the only action that will redeem any part of him to me.

If I ever get a boyfriend and start dissing my boys? You all better smack me upside the head until I stop being stupid.

And I'm done. Now on to more fun things:

A MEME:
I found this meme on Stacy's site. I adore Stacy and try to do anything she does. I want to be her when I grow up. Here 'tis:

Two Men I’d Love to Date (if they were single)
1. A Clive Owen look-a-like that plays and sings in a worship band in a really kick-ass spirit filled church. Know any?
2. Same as above but with a Christian Bale look-a-like. (And yes, I’m aware of the ridiculousness of the details in my fantasy wishes.)

Two Things I Am Wearing Right Now
1. A purple ‘Keep Austin Weird’ t-shirt.
2. Jeans.

Two Things I Would Want in a Relationship
1. A man.
2. A Christian man (see answers to first item).

Two of My Favorite Things to do
1. Play/hang with my kids.
2. Singing God songs.

Two Things I Want Very Badly At the Moment
1. To be madly in reciprocal love (I added that ‘reciprocal’ after realizing that, without it, it indicates a situation where I might be the only one in love. Been there. Done that.)
2. Someone to clean my house regularly for a cheap price. Oh wait…I meant world peace. Yah. World peace.

Two Things I Did Recently
1. Ate one of the 3 huge enchiladas my neighbor’s hubby made & she brought me tonight. I’m going to see about paying him to make them for me every single night. This means I will inevitably be a size 24 very soon.
2. Prayed over my sons.

Two Things I Ate Today
1. Way too many M&Ms.
2. PB&J with Lil’ Bro for lunch.

Two People I Most Recently Talked To
Aside from my boys?
1. My mom.
2. Future ex.

Two Things I’m Doing Tomorrow
1. Updating those use cases if it kills me. (Ah, the glamor...)
2. Trying to avoid having to do production DB2 updates for the users. But will end up doing them. (...the glamor never ceases...)

Two Longest Car Rides
1. Connecticut to Texas/New Mexico almost every summer as a kid. So that’s way more than two.
2. Boston to Roanoke, VA in 2004.

Two Favorite Holidays
1. Christmas.
2. It’s a tie between Thanksgiving and the New Year.

Two Favorite Beverages
1. Fresh home-made lemonade - not too sweet, please.
2. Any decadent mixture of espresso, chocolate and dairy.

Two Things About Me, Things You May Not Have Known
Like there’s anything I haven’t already told you? Let me think. Think think think think think…hmmm. Wow. I’m boring.
1. Ok, I have only one kidney.
2. When I was little, I prayed nightly to wake up and be a boy. God, in his wisdom, just gave me a little extra testosterone and kept me female. Thank you, God!

Two Places I Have Lived
1. Boston, Massachusetts
2. Austin, Texas
Yes, I have a thing for places that rhyme with "_ostin".

Two of My Favorite Foods
1. Mexican – and of this genre, give me enchiladas any day.
2. Breakfast – and of this genre, pancakes, hands down.

Two Places I’d Rather Be Right Now
As long as my boys were with me...
1. Cornwall, England, or
2. Somewhere with butt-loads of snow.

Two People I’m Tagging
1. Anyone
2. Everyone

My Lunch With a Gaggle of 2nd Graders

You guys are going to be so jealous. Today, I had lunch with a gaggle of second graders. It was the "holiday lunch" at The Boy's school. I was scheduled for a conference call from 9am-4pm at work. I told them I wouldn't be there from 12-1:30 and to get over it. They got over it.

I went to The Boy's school and hunted down his class. The Boy was so excited to see me. And (I love this part), he actually hugged me and blew me a kiss in front of his WHOLE class. This is where I love his social ignorance.

I had been joking with my coworkers that I'd be back if I survived the cafeteria food. I have to tell you, the food was actually really good. I had turkey & gravy, cranberry sauce, mashed potatoes, green beans, a roll and a little piece of pumpkin cake w/ a dollop of whipped cream. Honestly, it was very good. Who'da thunk it?

I sat on the ground outside (we had 80 something degree weather today) with The Boy's class. I pretended not to care about the spiders that checked us out (I can't let kids see how much I hate bugs). At one point, I said to a few of the kids around me, "Wow, this food is pretty good. You guys are lucky to have such a great cafeteria." To which one child replied, "Oh it's not this good usually." Ha!

I love meeting a group of elementary school kids. The Boy totally didn't realize he should introduce me. And I sure wasn't going to overstep any boundaries in HIS territory by offering introductions. So I got a few, "Are you [The Boy]'s mom?" I gladly claimed my title as such. One boy looked from The Boy to me and back commenting, "Hmm...I thought you'd look like him." I was also updated on my son's scholastic activities with such comments as, "[The Boy] is really smart in our class," and "[The Boy] hums all the time."

I have to say that The Boy has a very sweet group of kids for classmates. They are all polite and kind. Many are funny. And a couple of the girls seemed rather anxious for The Boy's attention. As a typical boy, he was completely oblivious of this point. One girl got my mental nod of approval. She was smart and well spoken without being sassy. She was pretty. She had nice hair (not blond). She wasn't one of those beauty-pageant-wanna-be's. I like her. I will keep my eye on her and fend off any other unworthy hangers on.

It made me feel so good to see how perfectly The Boy fit in the social setting. I've mentioned before how kinder and 1st grade found him sadly outside the social norm. He is in the thick of it in a completely appropriate manner this year. He seems invested with almost all the kids yet isn't quite the lemming I was at his age. I like that. He initiated quite a few interactions (which is a change from last year). And he responded appropriately when kids spoke to him. He joked, talked, listened. All at totally appropriate levels. Man, that does a mom's heart good!!!

I did notice the exaggerated blinking again today. I heard a few audible tics, too. Nothing I'm too concerned about. I Googled tics last night and read an article (which I can't find at the moment to link here) on how most kids his age have tics that wax and wane anyway. So even without Tourette's in the mix, this age tends to have some twitchy moments still. So I'll mention it here due to the implied subject of my blog. But I assure you I'm not worried about it at this moment.

Lunch with The Boy's class ROCKED. I wish I could do that every day!

Seeing a Few Tics, Some Thoughts & Some Pix

Greetings Earthlings.

(Hey, before I get started - Sarakastic, go read your comments. I need you to email me.)

Seeing a Few Tics
I've been seeing a few tics with The Boy today. Actually, I noticed a couple at church this past Sunday. I can't remember what he did on Sunday. I just remember being up on stage, rehearsing some songs and looking down. I remember thinking, hmmm...his face is tic-ing. Haven't seen that in a while.

Tonight, as he watched the long awaited Sponge Bob movie, I was looking at him and saw the exaggerated blinking thing. We had our neighbors over for some of my home made chili tonight. I saw him running around with their son and noticed a few exaggerated blinks with some raised eyebrow movements as he ran. Interesting. I won't panic. I'm just sitting here trying to think if there were any stresses in his day. He didn't mention anything unusual at school. So...maybe he's just tired? Maybe it's just part of the normal waxing and waning of his tics. I'll let you know.

Either way, he's still ridiculously cute. Just kills me. I love when he smiles at me. Or when he comes around the corner going, "Mom?" as if he needs to ask me something. Then just goes, "I love you," and runs off. Man, I am storing that away to remember during his adolescence!

Some Thoughts
Can I just tell you that my home made chili rocks? I'm not bragging. I'm just telling you I've eaten it every day since I made it on Saturday. Seriously. I could eat chili every day. Except for the days that I would want to eat enchiladas.

I'm currently reading a bible study done on the book of Acts. It's a study done by my former Boston church (Trish's church). I think of it as the Cambridge Vineyard but they're now the Greater Boston Vineyard. Which begs the question if there is a lesser Boston feeling all left out.

I've blogged before about this church's concept of The 40 Days of Faith. Well, it's usually done as a whole church during the Lenten period. A very powerful thing - when prayer is approached as a unified group - all in agreement! They have this amazing guy who works up these bible studies for each year. They post them on their site and I've downloaded every one of them to my computer. And I read them as my bible time. I'm not quite to the point where I can open a bible, read an entire book and glean the myriad of information that is there - if you know historical context, geographic significance, ancient Jewish culture, Roman culture, etc. I get quite a bit more than the average bear. But not like this guy does. And he presents it in a way that doesn't bore the snot out of me. I really have trouble sticking to the daily readings. I usually want to keep reading and end up reading about 7 days worth in one sitting. If you're wanting to read the bible but feel like you might want some guidance or insights but aren't really sure how to get that? Check these studies out. I think you'll like them. I've already read the Luke & Genesis studies. I'm planning on reading the Mark study next.

Some Pix
I've been enjoying the pictures other people are sharing. I just picked a couple more to show you today for some fun. I'll show you some of my siblings.

Here is my first day home from the Babies R Us store. I mean adoption agency. Or foster home. I've always said it was my first day home from the adoption agency but it's not like they kept me in a filing cabinet or in the infant aisle filed under "3 month olds". Notice the crankypants baby. Notice the high-tech baby seat. Notice the care with which my 2 yr old Big Sis is touching my arm. Or maybe she's going, "Mommy, how do I shut her up?" Notice the joy in my Oldest Bro's eyes. He obviously realizes I will idolize him for the rest of time. He's psyched. Check out the look on Middle Bro's face. It's like, "Yup. Great. Another one."

This one I love. Big Sis loves me enough to attempt to pop my head off. If it were not such a giant melon of a head, it may have just popped off. But this is no ordinary head. That's a Fegley/Ledgerwood head. They don't come much bigger or thicker-skulled than that. My sister and I have quite a few pictures like this. And by "this" I mean, showing the disproportionate gi-normous-osity of my head. Check it: I'm three. She's almost five. My head is way bigger than hers. I have other pictures that make this point in a much more comical fashion but this is what I had at hand. I also love the disinterest I have in her adoration. I'm all, "Dude, could you let GO so I could check out this baby bottle more?" I also love the cameo of Oldest Bro and a smidge of Middle Bro's head.

Oh this is gold. GOLD I TELL YAH! This is the first day of school, 1971. Like I needed to tell you the date with THOSE clothes screamin' off the screen? I'm pretty sure mom made those matching dresses. I was rockin' that mini dress and those navy blue lace-ups. This was my first real school - first grade. We had just moved to this town in Connecticut. Middle Bro now has a son that looks almost just like that - except more contemporary. Big Sis has freaking gorgeous hair, does she not? She was long & lanky even back then. Good thing she takes such good care of me because I'd have to hate her otherwise. I just love the stupid pose I'm doing. Far be it from me to just let someone take a normal picture of me.

And there you go.