Showing posts with label Tourettes. Show all posts
Showing posts with label Tourettes. Show all posts

Sunday, November 30, 2014

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

Thursday, June 16, 2011

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!

Saturday, January 01, 2011

Happy New Year

So the 1st year of the 2nd decade in this 21st century is over. I've been looking at postings all over the web where people have extreme sentiments about how 2010 went. I have no such feelings. 2010 was another year. I have a year of my job under my belt. I've worked hard to learn all the new tricks this old dog has faced. I got used to a long commute after 3 yrs of working from home. We had school, birthdays, holidays, illness, fun and lots of laughter. All in all, I liked 2010.

I have even been able to handle the disappointment of not having hover cars, personal jet packs or silver unitards. Though the latter is probably a kindness in obese America.

I post less and less on this blog. Not by choice. But because of time. I have precious little truly free time and choose to spend it doing more important things [to me].

One of the things I love at each new year is recognizing that my need for this blog continues to shrink. It's original intent was to document my struggle with getting healthy. That was derailed quickly with BigBro's diagnosis with Tourette's. And even that had to share the spotlight with my big dumb divorce. This blog was my lifeline during those horribly painful initial divorce years. Thanks to my rockin' God, that need has grown less with each passing day.

The marriage implosion began a few days after New Year's 2007. I just did the math on my fingers and double checked it on my computer calculator. I have survived a full 4 years since then. God walked me through the cess pool of hell that was my divorce. He pulled me up out of the pit and kept walking with me through the dark forest of the 2nd year. He stayed by my side as I exited the dark woods and began taking tentative steps into light and rejoining the world around me. He set me up in strength and confidence. He surrounded me with an army of family and true friends. And I realize that his protection and help surrounded my boys along with me.

I wish I could document the amazing personal miracles I witnessed. I don't share them in such a public forum because many of them were very deeply personal answers to very specific prayers. Many involved things that happened to other people. So to share them here would probably seem out of context and would appear petty and mean in stead of amazing and glorious.

I can only say that, when all hell broke loose and the proverbial crap hit the fan back in January 2007, I learned what it meant to press into God. I threw myself on him. I finally found out what it felt like to count on him to even be able to open my eyes in the morning. And he came through. Hugely.

So 2011 finds me employed, living in the house I thought I'd lose. It finds my boys thriving and hardly any Tourette's symptoms.

I have no doubt God will continue me on an amazing path. Now that I can see beyond my own whining and pain, I can finally ask God, "Now what?" Scary question. But I'd like to think I'm ready to take on whatever it is he wants me to do.

Wednesday, October 06, 2010

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.

Tuesday, September 14, 2010

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.

Friday, September 10, 2010

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!

Saturday, July 17, 2010

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?!

Thursday, March 25, 2010

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!

Sunday, February 07, 2010

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.

Tuesday, November 10, 2009

Focus!

Pokemon Boy is struggling this year. His teachers, counselors and therapists use words like "genius" and "brilliant" when they talk about him. As such, he has coasted through school in years past. He could float into class, listen with half an ear and still get As and Bs.

This year, he is in the gifted program for math. He's in 4th grade. And even I (former math major) have trouble understanding his homework. Part of that is that I haven't touched geometry or algebra in over 30 years. But the concepts are hard. They require focus and his full attention.

Pokemon Boy has the ability to comprehend almost anything. But if you can't give something your full attention, you usually will not succeed 100% in that thing. That pretty much applies to life. It certainly applies to advanced math. Pokemon Boy struggles as much with staying focused as most of us struggled with calculus.

For the first time, he is in a class where he will have to listen, work to understand and struggle to get As. This is a painful adjustment for him so far. He has brought home grades that span from the 60s to 100s. Somehow, he made the A/B Honor Roll for the first semester. It has shaken his confidence to the core. He has told me he isn't smart enough to be in the gifted program. He thinks everyone else is coasting and smarter than him. He's embarrassed to tell his teacher that he's not getting everything the first time. It's heart breaking.

In 2006, when Pokemon Boy was first diagnosed with Tourette's, the psychiatrist told me that she had thought ADHD when he first bounced into the room. But after talking with him, she ruled that out and honed in on Tourette's.

His inability to stay focused is rather typical in that he can be obsessively focused on something he loves. If they could figure out how to present algebra in Pokemon terms, he'd be all over it. But if he doesn't totally love something, he is easily distracted. And by easily, I mean, he's usually mentally checked out within seconds.

It's not all defiance or poo-poo-ing subjects he doesn't like. He is more inside his head than anyone I know. He thinks. Way more than a 9 yr old needs to. As he told me recently, every thought leads to a new one. You stare at a wall and think, "I wonder if that's cinder block or cement...I wonder who figured out to make cinder blocks hollow....bricks are solid..." then you're off picturing the brick making scene in The Ten Commandments which leads to thinking about what it must be like to make costumes for Hollywood movies which jumps you over to picturing the big Hollywood sign which leads to you pondering which font those letters are which makes you think of a little alphabet train you had as a kid which makes you think how fun it would be to travel across the country in a train which makes you picture the train scene in White Christmas and how sleeper cars don't look like that any more.

That's just a real-time sample from my head (which tells you I watch too many movies). Pokemon Boy gets like that. I've watched it happen. He glazes over. I always say, "He's just not there." It's not so much that he's tuning out his surroundings. It's more that he's diving so deep into his thoughts, he can't hear the surroundings that are way up there in that fading light of the surface.

So the boy's confidence is shaken. Deeply. His teachers see it. I see it. I tell him he's smart enough. I tell him I know he can do it. We discuss techniques to help him focus. We limit screen time. And if this were his only stress, I think it would be easily overcome.

But add onto that his worry over mom not working. What it mom can't find a job? What if we lose the house? What if we have to move? How much of our stuff would we have to sell?

Then toss on to that pile all the worry about his dad. Poor dad. He's lonely. I miss him so he must miss me. I want to go live with dad for a while. But that will upset mom. And I'll miss Lil'Bro.

Et cetera ad nauseum.

Other than praying, I can't think of a thing to do to remove the pile of stress. To build up his confidence. To help him enjoy the advanced classes.

Other than praying. I say that like that's nothing. I know it's something. It's more powerful than any physical thing I could say or do. But this imperfect physical being wants to DO something. I want to take an action to solve my son's problems. I want to jump into my Wonder Woman suit and save his world.

Well, his teacher is going to confer with her colleagues to see if they have suggestions. I will probably make an appointment to get Pokemon Boy reevaluated. It's been a while since he's seen a psychiatrist. I'll work with his teachers, school counselor and play therapist.

And I'll pray.

I will never stop praying.

Wednesday, September 09, 2009

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

Friday, August 21, 2009

Teachers: Two Thumbs Up

Well, we met both teachers today. My mom got to go with me to the kinder meet & greet. It was very cool. My heart goes out to the first time school parents. For most, it is just such a hard time. It was for me. I faked it well for Pokemon Boy's sake back in 2005. But man, it can be such a hugely paranoid time.

Lil'Bro's teacher is in for quite a ride. There are at least 6 kids in her class from his preschool. Which is odd since there are 10 kinder classes (all full - so like 20 per class!!!). But somehow, he and two of his best pals were placed in the same class. Three others we saw were in different classes. But his teacher seems very sweet. Very attentive. I think he'll have a great year.

Pokemon Boy is in the talented & gifted program. So his class is mostly those kids. His teacher seems like a doll, too. One kid from his summer daycare is in his class. They are both crazy for Pokemon. At one point, his teacher mentioned she needed to be schooled on Pokemon. Both boys offered to educate her. HA! Boy she's in for it now!

I chatted with Pokemon Boy's teacher - just letting her briefly know that his Tourette's isn't physical at the moment. That I'm her partner and will back up what she does and continue it at home. She seemed to know him from the prior year. He is a very outgoing and friendly kid. So almost every staff member we passed called him by name. So I imagine she already has some idea of the kind of kid he is.

We all left feeling very comfortable with the assigned teachers and excited for next week. Once again, God's rockin' the answer to prayer. So yay!!!

Oh, and while we were at kinder meet & greet, I got a phone message about a 2nd phone interview with a company I really want to work for. WOOT! I'll let you know how that goes.

Thursday, August 20, 2009

New Teachers

Tomorrow, we have the meet & greet at the elementary school. I'm not worried about Lil'Bro's teacher. He's pretty flexible. I've seen him flourish with different teachers at his preschool. He'll do fine. I'm always curious to see Pokemon Boy's teacher. Even though his Tourette's is very mild, he can still have emotional outbursts that seem to come from nowhere. Teachers that aren't ready to handle this (from any child, actually) worry me.

Last year, he started with one teacher. When I met her, she was nice. But kind of...I dunno...distant. Or walled off. When I told her his Tourette's was mild and she'd probably never see huge physical tics, she almost fell over with relief. That was not a good sign. I never got the sense that she bonded with any of the kids. Pokemon Boy loved her but then, he's a sweet and loyal kid. If the teacher isn't outright mean, he'll love him/her. But I never saw the connection we'd been lucky enough to have with his first and second grade teachers. Mid-year, that 3rd grade teacher "retired" with less than a week's notice. His new teacher was the bomb! Same caliber as his awesome 1st & 2nd grade teachers. She CARED. You could see it in every way she interacted with each kid. When he had bad days, I could tell it just pained her. I could tell all she wanted to do was find a way to help him. She really helped him ride out the 2nd half of the year and flourish even though he had his anxiety and anger issues.

This year, his former 1st grade teacher transferred into our school - as a 4th grade teacher!!! We hoped and hoped and she actually requested him. But alas, 'tis not to be. I don't know who he has. I just know it's not her. Which is too bad because she had a real knack for dealing with him during his meltdowns.

So tomorrow I go to meet his teacher. I've been asking God to send him the perfect teacher. I've been asking that for both boys. I'm not worried. But I will be watching to see how she interacts with Pokemon Boy. And I have to have the conversation I hate having. Making sure she knows about his Tourette's, making sure she understands how it manifests, etc. I hate the conversation because I feel like it kind of dooms him to it. Or I worry that the teacher thinks I'll just excuse any bad behavior from him, chalking it up to his anxiety disorder. But I have to put it in his files. And I want to assure the new teacher that he's on the mild end of the spectrum. And that I'm her partner. I work with her to understand when a "bad day" might be related to Tourette's. And even if it is, sometimes he gets consequences at home. It just depends. So I want the teacher to understand that I'm not hands-off. I'm not expecting her to deal with it all while I wash my hands of it.

I think too much.

Anyway, I'll let you know what I think after I meet the teachers. So far, every teacher I've met at this school is really awesome. So I'm hopeful.

Monday, August 17, 2009

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!

Saturday, July 25, 2009

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

Thursday, June 04, 2009

Tourette's News and Other Stuff

Tourette's News:
I heard this on KLOVE, of all places. Found it out on Reuters. Nothing earth shattering here but an interesting read. Another version of the report points to the fact that TS is found predominately in white kids (compared to black or Hispanic). Also, more prevalent in boys than girls. Just an interesting read.

Other Stuff:
I was just having a quick IM session with one of my favorite friends and authors, Trish. Talking or typing with her always makes me happy. I love knowing her. I often refer to her as one of the pillars of my spiritual support. She is one person I turn to when I want to be happy or freak out in crisis. I love having people like that. She laughed with me when I called her cell to inform her that I just purchased a very respectable "girly" top from Anne Klein. She dropped everything when I called her from a hotel room in pieces because my marriage had just imploded. Friends like that are gifts from God.

But what we were laughing about in our IM session revolved around a recurring amusement in our relationship. How I saw her speak at church one Sunday in February 2005. And I immediately dismissed her as some pampered "Christian wife" that had it all together and wouldn't have anything in common with me. I didn't like her. I wrote her off as just completely out of touch with any reality I might know. A few weeks later, when I took a class on seeking faith, who do you think one of the leaders of that class was? Yup. Trish. I remember seeing her and thinking, well, this class is a bust. Thankfully, God loves to show me how wrong I am but in a fun and humorous way. The long story short (that I think I've blogged about before) is that she is one of my most trusted and loved friends. A true friend sent from God.

I have so many friends in my life that have similar starts. My wonderful friend Kristen and our other friend Alicia - I did a similar thing. My first encounter with them was...I think at a friend's party. They were fans of this band - I was friends with most of them and was very protective about the guys and who tried to gain access to them. I was pretty smug and not very welcoming to girls who tried to enter our tight little circle. I sized these two up as groupies and didn't really pay them any mind. Fortunately, they were NOT groupies. Well, they LOVED the band. But they weren't just vapid chicks trying to hook up with a popular band. They actually ended up marrying two other friends of mine that I knew through that band. And they have been two of the most supportive loving friends I've ever had. They were pretty much the only two people we let babysit Pokemon Boy when he was a baby. They have driven me to doctor appointments, one of them drove us home from the hospital when Lil'Bro was born. And to think I thought they were just annoying groupies!

Yes, I realize all of these stories are a huge revelation that I am one big huge judgemental snot bag. But the beauty of it is, in stead of God stomping on my head with his ginormous steel-toed boots, he just shakes his head and makes these people I have misjudged my new best friends.

I was sitting here going through a list of friends that fit this pattern. It's pretty funny. Well, it's pretty pathetic, from one view. But over all, it's more funny. To me, anyway. Thank you, God, for not stomping on my head.

In another "Woo-hoo, God rocks" report:

God has once again rocked the money thing for me. I'm not sitting here saying that I expect God to constantly drop found money in my lap. But it seems to show up when I least expect it. And I am always seeming to have enough money to provide for my needs.

I remember back in that faith seeking class I mentioned above in my Trish story, they talked about tithing. When that subject came up, I remember thinking, "There it is...the price tag every evangelist eventually tosses at you!" But it wasn't like that. There is so much more to it and I'd need a whole blog to get into where it came from and why we still continue it today. But the part that stuck out in my head has always been the fact that it's the only thing God says "Go ahead, test me in this! See what happens." [ref. Malachi 3:8-12] Most everywhere else God kind of warns us not to put him to the test. But this, he says, go ahead - tithe and see how I bless you. I've seen so many people tentatively try it out. And I know so many people who have amazing stories that surprised them. I tell you, since I became the single person responsible for my household finances, I have finally really given like I wanted to. It started out rather sparingly. I was scared to give too much away at first. But man, every time I have hit the straights, God provides what I need out of the most unexpected ways. I'm not talking excess or lottery winnings. But I'm just blown away how it always seems to appear right at the right time.

So right now, I'm doing ok. I'm still living off of my severance package. And I will confess I have been treating the boys and myself to a few too many frivolities. I've been starting to wonder if it will stretch. Will I be able to keep the house? Will I be able to get out of the non-house debt I've dug myself into before it all runs out? But through it all, I just keep saying, Ok God, I'm trusting in you here. Whatever happens - house/no house, debt/no debt - I know you'll work it out. I'm not waiting for my big American bling bling lifestyle. I don't want that. I just want enough to raise my kids, meet my obligations and still be able to give some away. And I've been able to.

Today, I met with my financial advisors. And without going into boring details, I have basically just had a huge (in my book) amount of found money come into play. And it has no tax implications because it's from after-tax money (I've already paid taxes on it a long time ago). And it's just enough to be able to pay off the remaining amount of non-house debt I have. Still giving me a good chunk to either put into a retirement fund or into a rainy-day liquid fund.

This blows my mind. Because I dug myself into quite a hefty bit of non-house debt since the beginning of 2007. Between the actual legal costs of divorce, what I paid out in settlement and then the whole guilt spending resulting from said divorce, I had quickly racked up an amount that made one of my church friends gasp (but to be fair, she's a completely debt-free person). That was the amount I started chipping away at in January. Right now - 6 months later, I have it decreased by more than half! And I'm about 2 weeks away from being able to wipe it all out and just have a mortgage to chip away at. That is mind blowing to me. And that is all God. Every tiny bit of unexpected found money that has come my way in these 6 months went to pound away at that debt. And now this!

I know this is not very profound because I'm not putting numbers out there. I'm not really thrilled to say, "Hey, I'm stupid enough to have racked up $xx,xxx.00 in debt in a mere two years!" But you can fill in those Xs with any numbers and you can see it's substantial. Especially for a single mom who got laid off this past January.

God just keeps rockin' the rescue. He keeps providing. Even when I mess up my own finances. He's not a head stomper. He's a loving father that is amazingly patient with us. He has always had his hand out to me - my whole life. I'm just so glad I finally realized it back in 2005 and turned and REALLY took it.

God, thank you for the awesome friends you put in my life. Thanks for the new ones you're introducing me to right now. And thank you for always providing what my boys and I need. Whether it's money or love from my parents. You're so awesome. I love you.

Monday, May 11, 2009

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.

Thursday, February 26, 2009

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.

Thursday, February 19, 2009

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.

Monday, April 14, 2008

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