Sunday, December 31, 2006

Happy New Year

On this day, I am keenly aware of my blessings of health and beautifully whole children. As I keep my daily cyber-vigil with a new blogger friend Darlene, I am reminded that The Boy's TS is a cake walk compared to what some people are dealing with. As I shared with a couple at church today (one of many people at church that have been enchanted with The Boy), I told them about The Boy's TS. They both remarked that it was sad that he will have to wrestle with this but how great it is that it is so mild right now. I still thank God for that, too. And as I get ready to pray for our 37 yr old music director as he prepares for brain surgery on Tuesday, again, I am reminded that my burden is light - and not even a burden at all.

Tonight is New Year's eve. The Boy (6) and Lil Bro (3) both tried to stay up until midnite. Lil Bro made it to about 10:45 (amazing) and The Boy made it to about 11:30 (also amazing). They are both asleep in their tents (thank you Big Sis & Her Ridiculously Tall Husband) in the front room. I made little beds in each tent and crammed the tents around the Christmas tree. [The picture above shows THe Boy peaking out from his hippo tent. The hippo mouth opens and closes to let kids in and out. It's big enough to actually fit me in there. You can't quite tell but Lil Bro's tent is an elephant. The pink ear flaps are rolled up to expose mesh windows.]

Anyway, we all stayed up playing games and just enjoying each other's company. At one point, I just sat there watching Hubby & The Boy play Uno Spin and Lil Bro just play with the Candy Land pieces. And I felt the need to soak this up. To soak up the pure carefree closeness that I know one day I'll crave. I felt that, if I didn't fully appreciate the beauty of this evening, Darlene would tell me I would regret it. Because I know memories like this - memories of precious moments with her Mark - are probably helping her through her hell. But I also know that times like this are gifts from God. And on a larger scale, the fact that I'm sitting in a well heated home in a safe neighborhood where no war is being waged and nothing is taking my attention away from those two beautiful little faces...that is a huge gift from God.

I have to tell you two quick stories and then I'll leave you all to go pray in the new year:

1) Last week at church (Christmas Eve day), our pastor's wife, Saundra, gathered the children at the front of the sanctuary to light candles on a birthday cake and tell them the story of Jesus' birth. As she started setting up the story, talking about why we celebrate his birthday, Hubby and I hear The Boy pipe up, "How do we know how old he is?" Fortunately, this was appreciated with some laughter and Saundra answered his question saying he'd be about 2000 years old. I think that impressed The Boy. It just cracked me up but also made me happy that he felt comfortable enough in our church to ask an honest question.

2) This week at church, I was teaching the toddler class. The rest of the younger kids stayed in the service so The Boy sat with Saundra. At one point, I'm told pastor Barry was talking about different ages - he must have been saying something like "little kids and older kids" because The Boy piped up and said, "I'm middle aged!" - I assume he was meaning he's not a little kid and note quite an older kid. Again, his honest comment got light laughter. Barry didn't miss a beat and said something to the effect of, "Well, if you're middle aged, I'm in big trouble!" I was told this after church by someone who had obviously gotten a big kick out of The Boy's freedom of speech.

Love that kid.

God bless you all this year.

Tuesday, December 19, 2006

Lovin' the Laughter

I'm sitting here listening to my two boys playing together. They're chasing each other around the house with pillows from the study. It's that kind of gleeful laughter that only kids can make (happy kids, that is). I turned to watch them and noticed The Boy's eye movement (tilting his head forward to see when he rolls his eyes up). It's so automatic, it doesn't interrupt his playing.

A new thing developed today. The Boy was laying on the couch watching some mindless Disney show and we heard this little "" like about every 10-20 seconds. The kind of quick "mm" you give someone as you're listening to a story. An abbreviation of "mm-hmm", you know? He did it through the entire show. Never heard that before.

Earlier in the day, as I was playing with him (which entailed wrestling, hugging and kissing all over while he yells, "[Lil Bro]! Save me!!!"), I noticed lots of verbal tics happening but with his mouth closed. I'm wondering if he's subconciously suppressing them by clamping them behind a closed mouth. Because he didn't seem to notice he was doing the tics or the closed mouth. Who knows - could be that he's teaching himself ways to socially control things. I only noticed it because I was literally in his face during the play time.

The good thing is, it didn't interrupt his play. It didn't stop the squeals and laughter. And I am lovin' the laughter!

Holiday Stress?

In my last report, The Boy was doing swimmingly. Few to no tics and things were great. You'd think that, for a six year old, starting your almost-month-long winter vacation would totally mellow you out. But alas, we've noticed quite a pronounced increase in The Boy's tics since he started vacation.

His exaggerated blinking was almost non existent. It is now very noticable again and so much so that he has to tip his head down in order to look at you from underneath his eyebrows again. That had disappeared. But it's back.

The other day, hubby noticed that a modified "Spidey Hands" was back (see my 09/11/06 posting). We haven't seen that since...I don't even know.

Verbal tics are back. Mostly that same one I tried (poorly) to describe in a recent post where it almost sounds like he's blowing quickly out of his mouth between words or sentences. I've also noticed a bit of stammering here and there. Or...more like...hesitation in his speech - which isn't normal for him. It sounds like a nervous kid speaking. And he's not a nervous kid. He's a very eloquent speaker usually.

The one that bugged me (or made me nervous) the most showed up for one day and seems to be gone. He was talking to me and I noticed a tiny shake of the head. It was a very slight side-to-side movement kind of like when you're telling someone something that you just can't believe? Like you're shaking your head in disbelief - a slight no. That was over this past weekend. I noticed it for most of a day and haven't really seen it since.

Yes, everything is mild. I'm still thankful for that. But every now and then, I get these moments of panic. I get these visions of what things might grow into. I know I shouldn't worry until there is something to worry about. But anyone who loves a small person knows - you just want to fight off anything that will cause them ridicule. Even without the TS, he will get noticed by the kids who search for difference. Every kid takes their lumps at some point. Those idiot kids will find a reason. But man, big tics are just a giant target sign. Guh!!! It just kills me to think of it.

I gotta get my head out of this state. I have to go pray. See you all later.

Wednesday, December 06, 2006

A Great Checkup

Well, back to the original intent of this here blog thang.

Today, The Boy went to see his psychiatrist for a checkup. Since he's seen her, he's been having a very mild time of it. (Thank you, God!) I have to say that it was a very nice checkup. She asks him lots of questions. Today, she seemed to be gauging his anxiety levels. He's not a huge worrier but he does tend to worry about things more than most 6 yr olds. It's hard to describe. He's not an anxious kid. But if he needs something to stick to a regimen or schedule, he really needs it to stick. Example: today, we had his doc appointment at 9am. So that meant missing morning school. He asked me when he'd get to school and I said probably some time around 10:30am. He immediately did a mental check of his class schedule and realized he wasn't sure what the class would be doing at 10:30. The class schedule had recently changed and he got pretty upset over the fact that he wasn't sure what they'd be doing at 10:30. Now, if an adult did that, I'd think they had serious problems. When a six yr old does that, I think, wow, they're headed for quite a rigid scheduled life. Anyway, I assured him that he'd find out what the class was doing once he got there and he shouldn't worry about it. He calmed down immediately. And what was so interesting about his self calming? I watched him - it was like he made a mental decision to calm down. I mean, honestly, he was so upset that his fists were balled up and his whole face was scrunched up in that panicky freak out expression we get when we're about to lose it. I thought he was going to flip out. But I watched him get a hold of himself and it was like he said, ok, I can deal with this. And he just calmed down. I thought that was interesting. I wish he could do that every time he was upset. Are you kidding? I wish I could do that every time I was upset!

The only other stuff going on is the continuing exaggerated blinking. It's not real bad these days. And he has this new verbal tic. Hard to describe. I need to start finding a way of embedding sound clips on this site. But it's like, while speaking, he's subconsciously doing this quick blowing out of the mouth but he'll flip his tongue in a way that...I don't know how to describe it. It ends up sounding like if you were pretending to hock a loogie but very softly. I have no other way to describe it. As his doctor pointed out, it's not so severe that you're taken aback. Most people don't seem to notice it. And, those of you that have 4-6 yr old children in your life know that they're all making some kind of noise almost constantly. It's a very experimental age. With most kids, you can tell they're just trying stuff out. With The Boy, you can pretty much tell that he doesn't realize he's doing it and he can't control it. But hey - it's a very mild tic given the spectrum of tics.

The doctor asked if he had been making any progress in his maturity development. He is quite an interesting little guy. He's brilliant and that is very apparent when you meet him. But being incredibly smart doesn't always mean you're mature. And I think that tends to be a problem for The Boy. People meet him and note his ability to communicate way beyond his age. He can read texts that you and I might struggle with. Granted, he won't know what all the words mean, but he can read and write better than a lot of high school students I know. He can add and subtract the most ridiculously large numbers. His hobby is making multiplication charts on the computer - and not using a calculator - using his head. And not just 12 by 12 but 15 by 15 or larger. People experience these things in him and accidentally classify him as an older person than he is. He's so smart, we expect him to be able to function with the maturity of a junior high kid. But he is the quintessential 6 yr old. He loves burping and farting and slapstick humor (wait...that describes most grown men....hmmmm). He loves to dance with wild abandon. He loves to run around large areas until he falls down. He likes to spin until he falls down. He loves Care Bears and could care less how many boys tell him they're just for girls. He will get right up in someone's face, introduce himself and start asking them their name, age, house number, etc. He has no boundaries like an older kid would have.

His doctor said something very interesting today. She said The Boy lives in a very happy world where people are nice and friendly. Where everyone is helpful and loving. It's a beautiful world he lives in. When the real world (or negative aspects of that world) intrude on his world, it's still hard for him to deal with at times. That may be where the anxiety comes in. But we discussed how it's a lovely world The Boy lives in. And it's sad that, some day, he'll need to realize that not everyone is part of that world. I love that part of him because it's part of what makes him so generous and loving. But I fear his world because it's what makes him trust anyone. As his doctor put it, "He knows no strangers." We're teaching him. But I still see the confusion for him. When we try to explain dangers of strangers, why he can't play outside alone, why we can't leave him in the car alone, why he has to stay close to us, why he can't open the door when the doorbell rings, he'll accept our rules. And he'll accept that we're saying there are people out there who aren't all that nice. But I can see that younger mentality wrestling with - how can anyone be mean or dangerous? Everyone is so NICE! It's a normal part of growing up. But I think the point here is, most kids in 1st grade have a much better grip on that caution with the unknown. Not all. But most of the ones I know are not still as trusting as they were when they were 4 or 5.

Boy I'm really rambling here. I don't really have much direction in my thoughts today. I guess The Boy's duality still amazes me: his brilliance that rivals kids much older than him and his youthful trust in the entire world that speaks of a much younger kid. It's wacky. And I love it.

Anyway, I'm thankful that the TS tics are minimal at this point. And his anxiety seems to be at levels that he can control himself. His doctor says she won't need to see him until July 2007 unless something comes up in the mean time. That made me pretty darn happy.

Pray big. Expect miracles. Yah baby!

Tuesday, December 05, 2006

Another Aside: Christmas Tag

Trish tagged, me! Yes, I've been off my TS subject a lot lately. But that's a good thing. It means there isn't much to report on Liam's TS. Which means it's still very mild. So while we have this little break, here is everything you never wanted to know about me and Christmas:

1. Egg Nog or Hot Chocolate? Now who would be cruel enough to make me choose only one? I mean, is someone standing there with a gun forcing me to choose? I'll take both please.

2. Does Santa wrap presents or just sit them under the tree?
The big stuff is assembled and left near the fireplace. Usually with a big-ass bow on it. If it's small enough, it's wrapped under the tree. This was the fireplace last year...

3. Coloured lights on tree/house or white? Classic white. The ornaments add the color. I loved colored lights as a kid but just don't like them now. It's too much. Here's a shot from last year's tree.

4. Do you hang mistletoe?
No. I'm not into obligatory kissing.

5. When do you put your decorations up? I'm not anal enough about it to have a deadline. That's for people who stress out over holidays. I put them up when I find the time and the spirit (or my kids) move me. In other words, they ain't up yet.

6. What is your favourite holiday dish? "Dish" makes me think main meal stuff. I love it all. And it doesn't have to be the Norman Rockwell turkey dinner. I love my friend's traditional lasagna. I love the turkey/stuffing/gravy/cranberry sauce thing, too. But my absolute favorite (and yes, I spelled it American) is my chocolate chess pie with a scoop of vanilla ice cream.

7. Favourite holiday memory as a child? One year doesn't stand out above the rest. I have a generic memory of me and my sister & brothers all running in to grab our stocking's (each labeled with our names by my mom or Muzzy), emptying them out and freaking out over the loot. Also, mom making home-made cinnamon rolls. Or - going WAY back - when my dad would make his cinnamon toast in the oven. I mean, it was a huge deal and oh-so-special.

8. When did you learn the truth about Santa? I don't know. I just know my brother Middle Bro took great pleasure in telling both Big Sis and me the truth. Not sure what I thought. I don't recall much trauma over the revelation. I'll have to ask my mom.

9. Do you open a gift on Christmas Eve? Yup. Growing up, we opened our Muzzy gift (from my mom's mom, aka - Muzzy). But lately, we open our ornaments. Everyone gets one each Christmas. Which reminds me, we're gonna need a bigger tree...

10. How do you decorate your Christmas Tree? Well, this year, the first thing we'll do is check our fake (yes FAKE - get over it) tree for brown recluse spiders. If I find one, I will promptly scream and possibly curse. Then I'll spray the whole tree with any deadly chemical I can get my hands on. Bug spray, hair spray, that perfume some lady was wearing at the Dixie Chicks concert last night. Whatever works. Then we'll put the ornaments on with the help of my two boys (6 & 3). And then I'll reposition everything the boys did. Yah...that's about it.

11. Snow! Love it or dread it?
Loved it when I rented and our landlord was responsible for snow removal. Loved it with much griping once I rented and had to split shoveling duty with our upstairs neighbors (the ones who conveniently waited for ME to shovel it). REALLY love it now that I don't have it (sniff).

12. Can you ice skate?
Hmmm...once upon a time I was actually very good at it. I'm trying to remember the last time I was on any kind of skates. What decade is this? Yah, I'm thinking it might not be so pretty these days.

13. Do you remember your favourite gift? Cai's arrival on Dec. 22, 2003. (Plus, I got the spa treatement in Boston's Beth Israel for the next 5 days. Mellow stress-free Christmas in post-partum, being waited on hand & foot by an entire nursing staff? Can I go back please?)

14. What's the most important thing about the holidays for you? Being with family (that I like). Hands down.

15. What is your favourite holiday dessert? Refer up to #6. Chocolate Chess Pie - YAH BABY!!!

16. What is your favourite holiday tradition?
Watching It's A Wonderful Life, White Christmas and Scrooge (black & white version with Alastair Sim - it's the only one!).

17. What tops your tree? Last year, we had a star that was pretty but a bit too heavy. I want to find something special that will become a tradition for my family but haven't yet.

18. Which do you prefer giving or receiving?
Trish will think I'm wimping out here but I'm actually being honest. Giving is WAY more fun. I want to win a huge lottery just so I can find all the people from my life that I remember fondly just to hand them envelopes with various sums of money inside. That would just be the BOMB! But selfishly? When I give, I just LOVE watching people react (usually it's when they react in a positive manner that I like).

19. What is your favourite Christmas song?
Well, I love the drama of the "Oh Holy Night" but hate when people have to totally over do it. But I love so many of them it would be hard to pick just one.

20. Candy Canes! Yuck or Yum? Not a fan.

There it is. More than you ever wanted to know.

I'm tagging Kendra, Monica & Donny. Mostly because they're the only other bloggers I know!

Wednesday, November 22, 2006

An Aside: What Are You Thankful For?

While I might mention TS in this post, it's not really specifically about TS. But in the spirit of Thanksgiving Eve (a day I made up but love), I'm going to post some things I'm thankful for. And I'm going to tag my other blogger friends to post the same.

Now here's the rub. I want people to come up with at least 5 things (10 would be better). And really think. Don't just list a bunch of objects or obvious things. Really think about it. Maybe you'll throw on some seemingly tiny things that you take for granted every day. Maybe it's something you haven't thought about in years. Maybe it's something common but I want to hear WHY you're thankful. But just think about it.

OK...let's get to it!
  1. My health. Might seem like an obvious one I just told you to avoid. But here's how I'm thinking about this one. Yah, I'm generally healthy. But recently, I wasn't able to walk well due to a pulled foot muscle. And I thought, man, if I was missing just one of my feet, ordinary things would be so hard. Like driving. Or being able to jump up, run and grab my toddler out of harm's way. Imagine missing just ONE of your normal body parts. Even a finger would change how you had to do all sorts of daily tasks we don't have to think about. I can see, hear, smell, taste, feel. I have both legs, arms, all of my body parts that haven't already been surgically removed. I can see my boys, hear their laughs, hug them fully. That right there is just tops.
  2. God loves me and listens to me. Sound dumb? Think about it. And for the sake of this one-sided conversation, pretend you believe that there is an all powerful god. Now think about this...that god cares about ME - about every single one of us. And when I call out to that god, he listens and really cares about what I'm saying. And trust me - I am not a wordsmith. I'm not eloquent. And what I love? I don't have to be. There are some times I just sit there going, "God, I don't even know what to say!" I talk to him like I talk to anyone else. He gets me. Even if I just grunt. I don't know about you, but when the creator of the universe tells you he loves you and listens to you, that blows my mind.
  3. Prosperity: I was recently told that the biblical definition of prosperity is that you have enough to meet your obligations and still have enough to give away. That's a very different definition than popular culture has given me. So, based on that definition, I'm filthy rich. I have enough to feed, cloth & house my family. Enough to send them to safe schools. Enough to pay my creditors. There's the obligations. But I have enough to have a little fun, too. I can buy a CD, DVD, toy, whatever, here and there. We can go out to eat here and there. That's icing on the cake. And I can give to charities, my church, friends and family. I mean, I don't have a Bentley, a Jaguar or a Hummer. I don't live in the biggest house. I don't have money coming out of my nose. But man, I sure have more than enough.
  4. Family. This could be a whole other list...a whole other blog! I grew up in a great family (E.s.t.e.s family). The extended family, while distant, was a huge part of my life. And continues to be so. I have 3 amazing newphews from my E.s.t.e.s brothers. In 1978, I got a step-family (Jones family). We went through hell together until we got over ourselves and grew up. From them, I have 6 beautiful nieces and nephews. My birth-mom found me when I was 20 and I know and love her whole family (Ledgerwood family). She brought 3 siblings into my life and I have a gorgeous niece & nephew from them. She also found my birth-dad for me and I am close to a couple of cousins (Fegley family). I also have a sister from him and 2 nieces. Then my own little family - the most patient loyal husband. And the most gorgeous little boys I could ever have imagined having. Hubby's sister is also one of my best friends and she gave us a niece and 2 nephews. If I really got into the details, we'd be here all day.
  5. I have a job. Yes, I kvetch about it all the time. But I work for a large financial institution that is relatively stable. I have somehow survived in the same job for 20 yrs and have missed countless blanket layoffs in the company. I hate the pressure of my job but the people I work with are cream-of-the-crop. Some of them are friends outside of work. And the job affords us this great house & community, Hubby stays home to raise our kids and also #3 above.
  6. I love my church. How long has it been since I could honestly and excitedly say THAT? I grew up going to churches. And I enjoyed them all to some degree. But man, I have never been excited to get up and get there. I have never felt such a desire to participate. Honestly, whenever they have an announcement like, "We need help doing [fill in the task]," I'm immediately sitting there figuring out how I can fill the need. Sure, they need an experienced lumberjack...could I somehow take lumberjack lessons in time??? It's really amazing to me. Because, about 3 years ago, you couldn't drag me to church. But I found a group of true God-people. A collection of imperfect people all trying to get to God and figuring it all out together. No one shoving dogma down my throat. No one pretending to have all the answers. No one scowling and pointing a finger if I miss a meeting. It rocks.
  7. I love chocolate chess pies. And I have to thank Lou Kerby for giving mom the recipe all those years ago and making it a part of my childhood. I grew up thinking it was a Muzzy recipe. But it's from Lou. And I've turned on everyone I knew in the Boston area to these pies. They're all bumming that I live down in Texas now. But I left the recipe in very capable hands and hope there will be pies a-plenty in Boston, even without me. Now, down here, our division is complete and all houses are filled. I've already made 8 chocolate chess pies and have handed out 7 of them (we ate the other one). I'm planning on making about 10 more today. I'll be keeping 3 for tomorrow and handing out the others. Sounds a bit too Donna-Reed-ish to be me, I know. But I moved down here not knowing a soul. Now, one of my neighbors recently commented, "You know EVERYone." Yah. Pies will do that.
  8. I'm warming up to the mild Texas fall/winter weather. Last year, Hubby and I were rather upset at how warm it was on Thansgiving and that we put our Christmas tree up in 83 degree weather (wearing shorts and sweating). While I miss the classic New England change of seasons, I'm kind of digging the fact that I just ran to CVS this morning in shorts. I didn't have to bundle up in 952 layers just to walk to the car. I miss being able to count on seeing snow every year. But that just gives me an excuse to bring my family back to Boston in the winter.
  9. I have a pet-free house. Now, this one is a weird one. This past July, we lost our last kitty. Well, he died. And I know where his ashes are so "lost" is a euphemism (I explain this because The Boy just read this one and pointed out my error). Honestly, I can't think of a time when there wasn't some kind of pet in my house or apartment. So I'm sad, missing the companionship and fuzziness of a kitty or two. However...referring to #7 above, I made 4 chocolate chess pies and sat them to cool on the counters. And I walked away! When I returned, there were no overturned pies on the floor, no pies with little kitty paw shaped divets missing, no nibbled crust edges. I mean, I can leave an entire Thanksgiving meal on the table without posting 4 guards. No cat litter to scoop. No hair to pull off of everything. In an odd way, it's a good thing.
  10. I am so glad I live in America. Yah, we have a lot of people around the world that think we suck. I get that. I get that we actually DO suck at times. But when I can put my kids to bed at night and the biggest thing they have to worry about is where their favorite toy is in their bed? Yah, I'll take that. All those freedoms we have blow my mind. I mean, I can walk or drive down the road without fear of being killed. Oh sure, I might have an accident or something. But in general, the majority of us don't have to worry about dying everytime we leave the house. Yah, I'll take that, too.
That's all I can think of at the moment. I mean, that's all I have the time for. The Boy is waiting for his turn at the computer. And Lil Bro has already called his turn after The Boy. So I better free this thing up before I have a mutiny on my hands. Yah, if that's the size of the conflicts I have in my life? Life is good.

Happy Thanksgiving!

Tuesday, November 07, 2006

Mom Stress Increases Tics...Who Knew!

All is well in the land of The Boy. He's still doing quite fine and his tics are very mild still. Interestingly enough, both my husband and sister noticed lately that even his exaggerated blinking & eye rolling has been less noticable. I hadn't really thought about it. But his sleep has been good and the tics have been...well...not evident. That freaking ROCKS.

About the sleep - one thing I figured is, if it's not related to TS, what could make him have trouble sleeping? Lately, we've been trying to get that kid outside and running like a rabbit on crack as often as we can. That helps. Not that we keep him locked in a closet. But once he's home from school, there is homework, some computer time, playing inside with his brother, reading, dinner, etc. By the time you think, oh yah, let's run him ragged, it's time to get him in bed. So we're trying to make sure he can get outside with the other kids or just in the back yard. It's helping.

Now, having said that the tics have been less noticable, I guess I jinxed myself. Or my PMS jinxed it. Today, I had one of those days where I wanted to put my fist through a wall if you said hi to me at the wrong time. Those are lovely days, aren't they? Yes. Well, my lucky children get to deal with the banshee-from-hell if hubby isn't in throw-himself-in-front-of-the-train mode. Unfortunately, he was having a bit of a frustration day himself. Kids that are really into testing limits can really push your buttons on those days. Don't get me wrong. I'm not hitting anyone. I'm not screaming obcenities. I'm not locking anyone in closets, rooms or garages. I'm yelling when angry. And it's usually way out of proportion for the offense the kids have done. I mean, when an almost-3-yr-old is flipping out because his 6 yr old brother has touched a toy that said almost-3-yr-old has deemed as "his" (along with every other toy in the world), you should cut him a little slack. He's almost three. Last time I checked, that meant that he should be fulfilling the freaking-out-at-the-drop-of-a-hat portion of his toddler contract. And he was doing a bang up job. But I lost it and yelled and had to physically pull him away from the 6 yr old. And earlier, the 6 yr old wasn't listening to anything and was arguing over and over about the same issue that had already been answered by mom over and over. So I lost it and yelled. This pattern repeated itself in the time that the 6 yr old got home from school enough times to...(drum roll please)...make his tics not only reappear but INCREASE.

Yeah mom.

So yah. This afternoon and evening, we had lots of exaggerated blinking, eye rolling and 2 new verbal noise tics.

So if anyone asks you, "Hey, do you think stress can bring on or increase the frequency of a Tourette's kid's tics?" you can answer in a very informed manner, "You're damned SKIPPY they can!"

I know we'll all get over it and tomorrow will be a better day. But at this very moment? I suck.

Tuesday, October 31, 2006

Interrupted Sleep - Again

I want to post this so I don't forget it. The Boy has had some interrupted sleep here and there. Once due to cold medicine. But recently, we've had 2 episodes that are very similar and just not anything I've ever dealt with.

Tonight, we had just finished watching our DVR'd episode of NBC's 'Heroes' when we heard him come down the stairs (on a tangent here - LOVE this show!!). The Boy came down extremely agitated. When we got him to stand still at the couch, he was not making a lot of sense. I wasn't sure he was fully awake at first and still am not sure about that point. He was first crying saying he needed a snack because his tummy didn't feel good - at 10pm, that didn't make any sense to us. He said maybe it was the candy (Halloween) but I have to tell you, he had ONE lollipop tonight. One.

But I wish I had a video of how he was crying. He wasn't so much crying with tears and boo-hoo and all that. But he was agitated to the point of hysteria. His hands were in balled fists, every muscle in him was tense. I tried to sit him on my lap - a normal comforting tool I use with him with great success. But he was so stiff and tense, he pushed away from me and stood up. But then he seemed poised to just...I don't or something. I told Hubby, it almost seemed like he was in that fight or flight adrenaline rush. His heart was pounding out of his chest. We kept asking him what happened, did he have a bad dream, did he feel sick, etc? But he couldn't tell us. Finally he said, "I don't like today!" and we said why and he said, "Because of THIS!" We asked what "this" is and he said "I just can't explain it!" with shaking fists of frustration. We asked him if he was awake and he said yes. Hubby asked him if something had woken him up and scared him or if he had woken up, not been able to get back to sleep and then gotten upset because of that. He said it was closer to the last thing. He was a bit calmer and Hubby, at this point, was able to remind him that most people wake up at night and it's ok. If it upsets him, he can always talk to God about it or take some deep breaths. He also reaffirmed that it's perfectly ok for him to come find us if he can't settle down.

He finally settled down enough for me to sit him in my lap. I talked calmly to him and asked if I could hug him. Once I did that, he seemed to relax and melt into me. His heart rate had finally settled down, too. We got him to try a bit of milk but he really only had a couple of sips. Then he laid down on the couch and started falling asleep. I laid down with him and rubbed his head, kissed him, told him we loved him. He was asleep very quickly.

I really have no idea what this is about. This absolute panic and racing heart thing happened a few nights ago or last week - can't recall. I don't recall what happened - oh yah. I was sick and in my room so I got there much quicker than normal. I met him in the hall and he had that same absolutely freaked out look, tensed muscles, real panicky stance and that incredibly racing heart. We got him calmed down in my room pretty quick but the intensity of his agitation was just scary.

I have no idea if this is Tourette's or related to his anxiety. Is this just The Boy's version of night terrors? Tonight, because of Halloween, he went to bed late. He was very concerned with whether he'd make the bus in the morning, could I drive him in so he could sleep later, but if I let him sleep in he didn't want me to bring him to school between this time and that because no one would be in his classroom at that time as they'd all be at their specials (music, art, gym, etc). This is the type of scheduling that The Boy keeps in his head all the time and he's very upset when his routine is thrown off.

So...I'm writing this down while it's fresh because I can never remember it clearly 4 weeks later when we meet with the psychiatrist. I might even send her an email to see if this concerns her. I really really hope The Boy isn't going to develop any sleep disorders. I know they're common with TS. But, like most things, I don't want to start any self-fulfilling prophecies here.

Other than that, Halloween was awesome. The Boy's first year going door-to-door. He never wanted to before this. He and Lil Bro had a blast. We have way too much candy left over. Why isn't there a food bank where you can donate candy?

Friday, October 27, 2006

The Boy's Letter in 'That Darn Tic'

I had to share this. The Boy makes me so stinkin' proud. He wrote this letter to the TSA a while ago and it is finally in their kids' newsletter. His gorgeous little face is right on the front page!


Thursday, October 26, 2006

An Interesting Dinner with The Boy

Tonight, hubby and I were feeling especially lazy when it came time to make dinner. Trust me, this is no new revelation. We always feel this way when it comes time to make dinner. But tonight, we were feeling whiney enough to actually throw financial prudence to the wind, pack up the kids and head to Luby's. I could write an entire blog about how much I love this place but I digress.

We got to Luby's, went through the cafeteria style line (yes, I said cafeteria-style, get over it), paid, got to our table and all dug in to our bounty. YUM! The Boy ate a little but he kept chewing a bite and then spitting it into his hand. Sometimes he does this if he took too big of a bite. Our usual response is, just put it on the side of your plate and take smaller bites, ok bud? Tonight, however, it wasn't just once or twice. I don't think he got more than a few bites to actually go down. He told us that he has to do it. His body was telling him to spit it out. Now, he and I have been feeling a bit punky in the GI tract for the last couple of days. So I just don't know if this is a tummy bug thing or a TS thing. I asked him if he thinks it's a TS thing but he wasn't sure. So hubby reminded him that he can control a lot of his other tics and he should give it a shot with this one. I thought that was pretty cool - because hubby suggested that very matter-of-factly. But he wasn't able to eat any more.

So a teeny part of me is worried. But the larger punky-GI-tract part of me is sympathetic and assuming it's the tummy bug. Once his intestines stablize, I'll have to keep an eye on this type of thing - to see if it happens again. I'm hoping it doesn't - hoping it's the tummy bug. Because, honestly, how would I get a kid to eat if his body is telling him to spit it all out? For now, I won't even GO there.

One hint that we're fine: he had NO problem eating his Jello!

Tuesday, October 24, 2006

Taking on the "Tag"

Ok. Another non-TS aside: Trish has tagged me with a fun task and I have taken her tag.

She asked me to list "Five things I probably wouldn't mention at a cocktail party." As I noted on her site, I probably wouldn't be at a cocktail party unless the host was hip enough to consider Dr. Pepper as a cocktail. But that aside, yah, I can probably come up with 5 things that don't ordinarily cross the "small talk" boundaries. And honestly - as Trish already pointed out in her blog, is that really all we want to know about someone? Let me quote her here because she's just that quotable:
"We get caught up in the dullest conversations - 'What do you do?' 'Where did you go to school?' 'How old are your kids?' And we rarely move on to the juicy fun stuff that rounds out the edges of our lives and differentiates us from all the other people who share our job/school/rate of reproduction."

I doubt I can come up with anything that any of my regular members and readers didn't already know. And I must be careful here because there is a fine line between the task at hand and "too much information". No need to dredge up horrible past acts that will drive potential new friends away in droves. So I'll leave out my years spent as a dominatrix (for the record, mom, THAT'S a joke!).

  1. I'm a music lover that hates pretty much all radio except KLOVE. Now, to my Christian friends and family, that's not all that interesting. To my friends who knew me in the Boston rock & club scene, I think that would not only be interesting but highly amusing. While I was never a horribly debauched "scenester" wasn't exactly a sweet and loving persona I was putting out there. Anyway, I just don't have time to waste on music that isn't going to say something important or to lift me out of the valleys I periodically hit. (I say this as The Newsboys are singing "Amazing Love" on said radio.)
  2. Old news to most that know me but never fails to start a long and interesting conversation: I'm adopted and know my birth-family. That's a biggy and can still give me chills when I tell the story of how April (my birth-mom) found me.
  3. One of my "if money weren't an issue" dreams: to own and operate a country inn like the one in White Christmas. I would love to run a huge country inn in Vermont or somewhere like that. I'd have to hook up with someone who knows the business end. But I'd want to run the house and kitchen. Because you KNOW it would have a fabulous restaurant that would draw people off season. And it would be famous for the artery-clogging chocolate chess pie. And we'd have live entertainment - old school. I'd reincarnate Bing & Rosemary, man!
  4. One of my other "if money weren't an issue" dreams: to record all of my songs and a ton of hymns. I actually really want to do this one. I have a bunch of songs I wrote during my Boston music time that are just collecting dust. I'd love to record them with all of my musician friends as guest musicians. And I'd have my producer friends all do the production and my artist friends do the cover. Yah. I want to do that.
  5. And once I dropped that one, it would easily lead into the fact that I'm a singer who has done everything from singing to huge churches, opened for a big Boston hard rock band to a crowd of probably 3000, sang with the lead singer of said big band in a few Boston Rock Opera shows, to singing my lungs out currently at my church (apologies to the ear drums of those that sit in front of me). I've been Jacob Marley, Krishna, a drunken apostle, Simon Zealots, an activist, a priest, a Transylvanian, one of the 3 fates, one of 3's been fun and nutty. That usually gets conversations going.

So'd I do?

Monday, October 23, 2006

Just Checking In...

I have no real updates, revelations, epiphanies or anything really regarding The Boy. Which is good. I am glad that all I have to write about him is, he's gorgeous, smart, funny, a giant pain in the ass, and the most wonderful six-year-old that's ever been ripped from my abdomen.

One thing I was pondering today: Isn't it funny how most humans have a desperate need to know exactly why something happened? Or where it came from? I'm speaking about the thing almost all of us do. Most people try to trace all genetic traits back to this side of the family or that. Good or bad. We're always trying to connect the dots. As an adoptee, I am particularly guilty of doing this. But, as an adoptee, I've always thought it was just us "disconnected" adoptees who did this. However, from the moment I knew I was pregnant, the practice began. And it came from all sides.

As soon as the kid is born, we're trying to peg exactly from whence came the nose, eyes, ears, toes, eyes, texture of poo. It's insane. Everyone does it. (I have a theory that all the post-partum nurses just say things like, "Oh, he looks JUST like [insert you/dad/any other relative in the room]!" Just as they're trained to tell every mother that hers is the CUTEST baby on the ward. I've seen a lot of newborns. Those nurses lie about 73% of the time.)

It happens at all ages. Not just with babies. My sister and I are both adopted and are like polar opposites. She's the tall, lithe, blond-blue-eyed nordic queen. I'm a dark haired, brown eyed hobbit. And seriously, I've had people say things like, "Oh yah...I see it now!" in response to me saying she's my sister. Oh yah...I see it look...NOTHING AT ALL ALIKE.

Yah, so, I was thinking about this. Because, even with the "bad" traits - everything from hammer thumbs to wide Fred-Flintstone-feet to TS - I'm amazed at how quickly people want to claim it as from "Their Side". I find it odd because, well, when The Boy was born and we discovered he had renal reflux, I cried and went through lots of guilt. I had it as a child and went through tons of tests and surgeries and almost died a few times (cue violins). Fun stuff, that. So of course, even though The Boy came 35 yrs later (ie - medicine probably has a better grip on this now), I just assumed his fate was the same. And shame on me for reproducing and saddling my child with such bad genes and it's all my fault and woe is me. It didn't last long because my husband is wonderful and snapped me out of it. But it happened. And guilt like that happens all the time when there's any kind of non-desirable trait that pops up in a wee bairne. point...what the heck was my point here? Oh right. So with this Tourette's thing, yah, genetically, it could have come from anywhere. And at this stage in my life, I'm very much at the point of "who cares, let's just deal with it." So I pretty much assumed it came from my side since my half-brother had it. Kind of a done deal in my head as far as the genetic tree branch from whence it came. So today, I got an email from my dad-in-law and he was theorizing that it might have come from his side. He has also claimed responsibility for some temper tantrums and other less-than-desirable traits. I just found that funny. Most granparents are claiming the cute humor, the genius factor, the good looks, the whatever-is-good trait.

But as I thought about it, it brought me back to that desire that most of us have to try to connect the genetic dots. And it's not just us adoptees who are just trying to find our roots. I found my roots. I have all my birth family present and accounted for (which could be the subject of a whole other blog!). But I still always try to figure out where everything comes from - who looks like whom, who acts like whom, etc. And everyone else does, too.

Ain't that funny? Or is it just me?

Thursday, October 12, 2006

An Aside: They don't KNOW from cold!

Just had to share. I went to my local huge-gantic grocery store today. I have, not surprisingly, made friends with 3 of the regulars behind the deli-meats counter. There is something to be said for when you walk up to the deli, they automatically pull the white American, the muenster and the beef balogna. And of course, on those rare occassions where I don't have both boys with me, I am peppered with "Where are the boys?"

I'm totally off point here.

So, Sweet-Lady-With-Five-Daughters is chatting me up and says, "Are you ready for the cold front tonight?" "Is that hitting tonight?" I ask. "Oh yes," I'm assured. "It's gonna get COLD tonight!" "Really? What's the predicted low?" I ask, knowing I'm about to get the definition of cold from a native Texan. "They say it's going to hit FIFTY!" I turn to Transplanted-Lady-from-Maine and say, "They think fifty is COLD!" and we laugh. If there was any poetic justice at my grocery store, someone from Canada would have walked up and shut me up. Canada KNOWS from cold.

But the Texan definition of cold still cracks me up. Give me a year or so. I'm sure I'll be shivering when it's 70!

Is It TS or Just Being Six?

At this early stage, it's so hard to tell if The Boy is tic'ing or just being a six year old. If you've read previous posts, you'll recall I said something to the effect of, if you put 100 six year olds in a room, most of them would be twitching, twiddling, clicking, grunting or something else. It's like a miniature glance into puberty - your body isn't under your control and you're usually full of incredible amounts of sugar.

So The Boy has allergies. This means sinus drip. This means disgusting stuff dripping down the back of your throat. This means you clear your throat. Constantly. But there are times when you can just tell The Boy is clearing his throat for sinus drip and then there are times you can tell it's not quite under his control. Then there are those times you can't tell which is the cause. But clearing throats doesn't really bug me.

One of the other attributes The Boy tends toward is difficulty in recognizing and implementing social limits. Is this TS or is this just The Boy being The Boy? I know a lot of 6 yr olds that have way too many social limits because of shyness or overbearing parents always tapping them on the shoulder so they can give them that slight disapproving glare that means, "Quit it!" I know a lot of 4 & 5 yr olds that are just as exuberant and in-your-face as The Boy. They haven't picked up on the subtle body language thing yet. Backing away from them just translates to, oh wow, I can step toward you more! I have been led to believe that, by 1st grade, most kids have started recognizing these social signals and are getting better at understanding and implementing boundaries. So, The Boy is a bit behind in this. Or so I'm told. I might just be being a typical blinded-by-love mom here, but I like innocent exuberance better than kids that are afraid to do anything because they're afraid they'll screw something up or get a tap and a glare. I dunno. This of course is coming from someone that used to walk up to people and say, "You and I seem to have [fill in subject here] in common. We should be friends." I have made quite a few good friends that way.

The blinking and eye rolling is still happening and it's definitely not under his control. But there are just certain sounds he makes that I'm not ready to chalk up to TS every time I hear them. There is an interesting little squeaky noise he makes when peeing that cracks me up. But again, I'm not ready to wave the TS flag at that one.

On another note, I have way too much saved on my DVR. One of the things I have saved is the HBO documentary "I Have Tourette's But Tourette's Doesn't Have Me". I mentioned this before. I had decided not to show it to The Boy because the kids in there range from very mild to very severe cases. I didn't want The Boy to think, oh, this is what must happen to me. So it's still on the DVR because Hubby wants to check it out. SO...the other day, we're scrolling through our recorded items list to find something for The Boy and he sees that title. "What's that?" he asked. So I told him about it. He wanted to watch it. I was hesitant but thought, why not. So he watched it. I asked him what he thought and he told me he wasn't very interested. If "not interested" means his eyes never left the TV and he stayed to watch the whole thing, then yah, he must not have been very interested. It's a great documentary but is hard because some of the kids explain that they have a really hard time at school or socially or whatever. Some of the home video makes you wonder how some families survive this. But The Boy watched it and hasn't had any questions since then. But I have to tell you what a sap I am. At the end, they wrap things up and then give you little updates on each of the kids you saw. And while they're doing this with pictures and text, they're playing this version of "Tomorrow" from Annie. A song I learned to hate long ago because I grew up in the NY/CT/NJ tri-state area and had to listen to commercials for "Annie" on broadway ALL the time. But this version was really good and it fit the update so much and I sat there watching my son who has TS as he's watching the updates with lots of interest. And it was just all too much for me. It's one thing to watch a documentary like that by yourself. But watching my kid watch it - I don't know how to describe it. I was watching him watch something that may or may not happen to him. I'm sure there is way more fear in ME than in him. But it got me. And I had to walk into the bathroom to cry. I came out to find Hubby doing the same thing. But in the end, we both just grabbed The Boy and hugged him and told him he's so awesome and he wiggled away to go do computer time, wondering, "Why are my parents so weird?"

Thursday, October 05, 2006

Happy 10th Anniversary!!!

Just had to share that today is the 10th anniversary of Hubby's and my wedding.

Hubby said to me today, "Who would have thought back then that we'd be living in Texas in 10 years!" Yah, that was definitely not in the original plans. Two adorable boys weren't quite in our sites either. The "kids" thing was definitely still a "someday" plan back in 1996. Funny how at 30, I still thought I had plenty of time to ponder that one.

Ten years with one of the sweetest, kindest, most loyal men I've ever met. And he gave me two of the most wonderful boys in the WHOLE world.
The Boy & Lil Bro at the playground - circa Oct 2005
How'd I luck out, man? (Thank you, God!)

Sunday, October 01, 2006

Gotta Chill Out

So...I was up in Boston last week chatting w/ my boss. If you recall from earlier posts, she had TS as a kid and has a rather "twitchy" aspect when under stress. She was asking how The Boy is doing and I told her that mostly, it's just the exaggerated blinking. I told her a few other things that he does that align with the write-ups on TS and she gave me some interesting and good advice: Don't read into all of his actions as having to do with Tourette's. I mean, let me give you some examples. His constant throat one point, this was definitely something that was not under his control and it was also not related to anything like sinus drainage or something like that. But now? Since moving to this area, he's dealing with all sorts of allergies. His docs actually confirmed that. So, yah, his throat clearing could be his allergies, TS or both. Who can tell? Another one that the psychiatrist noted was his tendency to echo something someone said. He happened to do it with her - she said, "Follow me. I'm way down at the end of the hall." The Boy followed her singing "Way down at the end of the hall," over and over. Um...if memory serves, I'm pretty sure that was an obnoxious thing I found very funny when I was 5 or 6. And I notice that lots of K and 1st graders tend to do this, if they are of that ilk (wisenheimers). So is that TS or is it just The Boy being a goof. I have to say, I don't see him do that echoing very often. So I'm chalking that one up to goof.

Anyway, I'm not being stupid by thinking everything is just coincidence. But at the same time, I'm trying to chill out on the analysis of every movement or sound. All of my reading has told me that diagnosis of TS at the age of 5 is not the norm. Probably because TS can be progressive and usually gets to the point of someone saying, "OK...that's just not normal" when they're more like 8 or 9. I think The Boy's early diagnosis was fortuitous but also a fluke. If he hadn't told me that his body was making him do this stuff, I would never have noticed most of his actions as anything other than The Boy being The Boy.

So, Hubby and I are trying to let him be a six year old. His blinking and eye movements are still a reminder that TS is there. Some of his noises still remind us, too. But then, some of his noises remind me of experiments most of us were doing with noises in the 1st grade.

Just thought I'd share. Because I was starting to watch everything with too much scrutiny. Making myself nuts. I think I'll save that energy for a time - if it happens - when his TS needs it. For now, I'm the mom of a pretty normal (and as Trish points out - genius) six year old.

Saturday, September 23, 2006

Leaving Books Around...

So, I've been reading everything I can get my hands on about TS as most parents do when their kid is diagnosed with anything they don't know a thing about. I wanted to order a bunch of books on TS but didn't know which ones and also didn't have a ton of extra cash laying around to order said books. My sister-in-law is a nurse and sent me a big package from Amazon full of a lot of the books I wanted anyway. Which rocks.

Two of the books are written by a guy with TS for kids. At this point, I was overloading on TS info and was worried about doing the same to The Boy. I mean, as I've the moment, his tics are minor and totally socially accpetable. So I don't want to shove all things Tourette's at him to freak him out thinking, oh this is what WILL happen to me. But at the same time, I want him to feel informed about his situation and to know that he's not alone.

So I left the books on a book case with a bunch of other books. He found them this week and finished the smaller one, 'Hi, I'm Adam: A Child's Book About Tourette Syndrome' very quickly. He saw the next one, 'Adam and the Magic Marble', (a bit thicker) and read 10 chapters in 2 days (keep in mind, he's been reading the same amount of chapters in other books at the rate of about 1 chapter a day - just because they don't hold his interest).

I'm just so psyched that he chose the time to read these. And also that they're not freaking him out in any way. My mom also read them while she's here. I still have to read them. I've been concentrating on the adult stuff so much.

Just wanted to share. I was really psyched that he's reading them.

Tuesday, September 19, 2006

Teacher Conference

We met with The Boy's 1st grade teacher today, Ms. Gray. I am once again reminded how lucky we are to have her. She gave us a glowing report on The Boy. Academically, he's beyond his years. Socially, he's a 6 yr old. She suggested we recommend him for the TAG (accelerated) program. They test prospective students in January. I was concerned that the accelerated pace may be difficult for him to keep focus. But Ms. Gray is confident that he'll do great in it. At the worst, we try it and it's not a fit and no harm done. It was just good to talk to someone who has experience with it. He is definitely in the right place, with the right teacher.

Another nice thing was that she said she hasn't been seeing a lot of tics at school. So the combination of his being engaged, focused and happy must be the key. I saw a lot of the blinking and eye-rolling thing tonight at dinner. It's still something that many people over look. I know my parents have mentioned that they don't really notice much. So I am thankful for the lack of severity at this time!

Monday, September 18, 2006

Special Kids for Special Parents

I forgot to mention this. My good friend was talking to me the other night. I was sharing about The Boy because I hadn't had a chance to tell her yet. She lives around the corner and her three gorgeous girls and my boys play whenever we can orchestrate our busy lives to such fun.

I was telling her about this because I hadn't had a chance and also because I know she loves The Boy. Well, once I told her, it totally occurred to me that she's a mom that totally understands where I'm coming from. She understands all the crazy wacky-end-of-the-spectrum fears that hit you when your kid has any kind of challenge. Her 3rd daughter, born earlier this year, is hearing impared. We're not sure exactly to what degree, but their entire family is already learning sign language (the baby just signed 3 words together the other day!!!) and the baby is fitted with tiny hearing aids. And as we talked, I was thinking, why the hell wasn't she one of the first people I told?!

But all that aside, it's just so nice to have friends that want to drop everything, read everything they can find on TS and help you out. People in our lives are just so great about that.

The one thing I popped back on here to say was something that she told me. And I've heard things to this effect before and chalked them up as silly idealistic euphemisms. But coming from this mom - who knows what it's like to fear for your child's "normal" life - it just hit me altogether differently. Hit me square between the eyes. Here's what she told me (and I will paraphrase dreadfully, to be sure):

God must think that we are special parents. I mean, we are special enough that He would entrust to our care this beautiful special child. Our children have these obstacles to deal with. And God thinks Hubby and I are good enough parents to be the ones that help him through this life.

In earlier years, I would have thought of that as crap. But I'm telling you, God put me in the right family that could care for all of my medical and emotional needs throughout my childhood. I'll tell you that whole story another time. But those of you who know me, know it's true. And now, God put The Boy in the right family that could care for all of his medical and emotional needs throughout HIS childhood. And I have to say, the example set by my mom in her care of me? I look to that ALL the time. So yah. God must think that I can do this. So obviously we're gonna succeed, yes?

Can I hear an "amen"!

The Grandparent Factor

My parents got here last night. They drove from Roanoke, VA, to here. A few stops to see some relatives on the way, but that is one looooong haul for them. They are pooped, to say the least. Of course, the minute they got out of the car from their 4hr+ drive from Dallas, they were getting the The Boy & Lil Bro show. Truly no rest for the weary.

The Boy and Lil Bro are beside themselves with joy to have their grandparents here. The Boy - being the ever true-to-his age six-year-old - is saying/asking things like, "You're too old to play freeze tag, aren't you?" and "Why is that skin hanging down from your chin?" (My genius dad answered, "It's tired skin.") I remember wobbling the arm flab on my own dear Muzzy (mom's mom) and asking her what that was. I'm sure my grandkid will be asking why I have a mustache or why there are small farm animals hiding in my armpits. I have no idea but I'm ready for it.

The interesting thing about my parents being here is, I have barely seen tics in The Boy. I'll have to ask his teacher if she's seen any reduction this week. But I have read that when TS people are engaged and focused, they tend to tic less or less severely. I keep seeing that be the case with The Boy. I'm hoping we can find him that one activity - be it sport, music, art, whatever - that he will be able to use as his tic-free zone out.

We shall see. In the mean time, my boys, my husband and I are just enjoying having granparents around.

Saturday, September 16, 2006

God Rocks!

So, back in spring of 2005, I had to decide whether to stay living in Boston or move to Austin. My whole family was going to be affected my MY decision. I was terrified of reading the signs wrong or adding the pros and cons wrong. I asked God which way to go but I just didn't ever get that giant blinking neon sign pointing to one place or the other. There were things pointing to both. The Cambridge church and my involvement there was almost my stop-issue. I was so afraid God was saying I belonged there. But I felt like there was a push to break some old descructive ties to Boston. So I went to Austin wondering if I had read God right or heard only what I wanted or what. Well, here's the confirmation and praise:
  1. I prayed for a realtor that wasn't a crook. I was terrified of getting someone just out for a commission - not caring what I bought. Well, I got the best integrity-filled guy and he's still a friend. He was very obviously God's answer to that one.
  2. I prayed for good neighbors - remember that one, Trish? I was just like, God, don't let me be surrounded by psychos. I mean, just nice quiet people who stay to themselves. I don't think it occurred to ask for God people. You have to see our little subdivision. I have neighbors that agree it's filled with just the nicest people. And the fact that there are big-time God people in here, you do the math.
  3. I prayed for a smooth house purchase. From the horror stories I've heard, we had the SMOOTHEST.
  4. I prayed for good Godly friends - assuming I'd find them at church. Yah, well, within a short time being here, one awesome neighbor and I connected and realized we're both praying God-people! Then, he plopped our 2 new best friends 3 doors down. And she had been praying for God to send her family to the right neighborhood. It's uncanny.
  5. I prayed for a good pediatrician - done. She's the bomb. Sweetest thing you've ever met. Totally proactive - totally a whole-person doc. LOVE her. So do the boys. They call her "Doctor Amy".
  6. I prayed for a good safe school & awesome teachers for The Boy. Honestly, we're in the best freaking elementary school. His teachers are just amazing and are taking this Tourette's thing on as a whole school. They are proactive and just make me want to cry when I think about it.
  7. I prayed for a good referral for The Boy's TS and they sent me to a psychiatrist. Of course, I was filled with doubt - that this would be the hack that doped The Boy up. Well, I should have known better - God sent us the best psychiatrist that really cares about The Boy and is committed to no meds unless absolutely necessary. We feel her diagnosis and plans for therapy are spot-on.
So, I'm thinking God has slowly been confirming that this was his place for us. And I'm wondering if it was specifically picked for The Boy's problem. I'm just thinking about how many of the above points would have been obstacles for this whole Tourette's thing if we were still in Boston. Not that there's not good help to be found in Boston. But I'm just saying, here? The help came and found ME. Anyway, it's just so good to know that the community we're in is so perfect to help us along with The Boy's TS.

Anyway, GOD ROCKS!!!

Wednesday, September 13, 2006

God Sent Our Education Advocacy Team

First, let me say, Kendra - you rock. I will use those verses and search out some others, too. Thank you!

Today, Hubby and I met with The Boy's 1st grade teacher, the school counselor and the school nurse. And I have to tell you, they approached ME about this. Now, I've been reading about how you have to be the advocate for your child's education in situations where he/she might have something that will impair learning or social aspects of school. I've read horror stories about people who had to fight schools just to get their kids common-sense type help. Blows my mind and made me wonder what I'm up against. And here comes The Boy's school, asking US if we'd like to meet to discuss what plans - if any - we would like to make for him. Don't even TELL me there are no miracles these days.

And these women were so incredible. They asked questions, they let us talk, they offered their own thoughts. It was truly a discussion of people who wanted to make sure The Boy is getting the help he needs. They actually had a 3rd grader with Tourette's (sounded like maybe last yr?). That mom had brought in this documentary to share with the kid's class. It just won an Emmy - an HBO documentary called, "I Have Tourette's But Tourette's Doesn't Have Me". I've seen it. (btw - that link will take you to a site that will show you a 4 min clip of it) I was just so impressed with the idea of that 3rd grader having the guts to share it. Anyway, the counselor is ordering the DVD for the school to have. They all said they wanted to watch it just to get a better idea of what The Boy is up against. I mean, man! This is a proactive team.

So we left that meeting all agreeing that, at the moment, there really is nothing to do for The Boy but keep an eye out for signs of him having trouble learning, getting frustrated, etc. But to know that all of them will be watching out for him and reporting back to us, that's cool. They also asked us to share anything we find out either from The Boy, his doctors or our own reading. I already pointed them to the site.

I just felt great about it.

Oh, one more victory: Last night, Hubby read with The Boy. And The Boy didn't experience the same frustration with reading as the previous night (because of his eye movements making him lose his place). That made me think that God is listening and answering. He is definitely giving The Boy control over things for now.

Tuesday, September 12, 2006

Claim it

I just stumbled across this blog, and you need to know this is my FIRST EVER attempt at posting something on a blog. Donny will be so very proud. I really loved reading all your posts . ..especially the one that summerized the history of what has brought little [The Boy] and you to this point you find yourself in as a mother. I just wanted to share some scriptures with you that I go through seasons of claiming for Tyler, and I want you to claim them for The Boy as well. Write them on cards - post them on your mirror - pray them back to the Lord as your promises from him. He IS faithful. Believe He can do it! Ok, here's some that I like: "O Lord, my God, I called to you for help and you healed me!" Psalm 30:2; "Heal me, O Lord, and I will be healed; save me and I will be saved, for YOU are the one that I praise." Jeremiah 17:14. Be blessed . .

Praying Big

So I went to my small group tonight. We're starting to study/discuss the book of Mark. And one of the points we talked about was faith. A friend said he likes to pray big. Because the miracles in there are for us today.

I'm all for praying big. I'm pretty good at it but usually for other people. Not for me. Call it one of my many imperfections. So, tonight we prayed big. I prayed for total healing for The Boy. That God get all the connections and synapses in The Boy's brain firing the way they're supposed to. We'll see what God will do. Nothing wrong with praying for big things. The worst you can get is "no". And maybe God gave The Boy this particular set of talents to be another spokesperson for TS.

I'm excited to see what God does...either direction.

Monday, September 11, 2006

Hind Sight is 20/20

Don't feel to bad for me. Yet. I might change that tune in a few years. We'll see.

Let me give you a timeline - the benefit of hind sight. And this is a long one folks.

The Boy was born in 2000. We knew he had renal reflux before he was born. Due to the regimine of antibiotics from the day he was born, he was on a strict anti-candida diet. Don't get upset. Babies have no idea you're limiting their sugar intake. Everything is new and exciting to their little taste buds. And it was a battle to get that point through to well meaning yet idiotic friends and family who insisted the baby needed to eat some cake. But I digress.

I mention all of this because I wonder if his early diet (which we pretty much stuck to until he was 3) has delayed the onset of TS or maybe made it less severe. But I'll get back to that.

So fast foward. The kid is brilliant. And that's not just his mom squalking like some grandmother insisting her tone deaf grandkid will be the next American Idol. Ask anyone who's met him. Ask all his docs. I mention this because I think his smarts are helping him deal with his TS.

In the summer of 2005, The Boy figured out the concept of a punch line and accompanying snare shot. "Take my wife...please!" (bah-dum-bum!) So he started telling jokes and punctuating the punch line with a vocal snare shot that sounded like a weird throat clearing thing. This morphed into the sound being made pretty constantly. I did what most parents would have done and offered more water and chalked it up to allergies. This sound continued off and on for the next year and still makes appearances.

Over the next year, we moved from New England to Texas. Once we got here, we didn't really see anything strange from The Boy - but I will confess here - my husband and I could easily have missed a LOT. We were busy for the 1st 3 months. Busy having a "what the hell have we done?!" melt down. The Boy survived - thankfully.

In April 2006, we noticed a hand movement we labelled "Spidey Hands". He would move his fingers against his palm almost like he was drumming his fingers on the palm of his hands. But it often looked like Spiderman trying to shoot this...

Anyway, I didn't think much of it. But it started to be constant. He'd be writing or typing on the computer. He'd put his pencil down or stop typing - like to think. And while was thinking, he'd do the Spidey Hands thing. No biggy. But then we noticed he'd hold the chain of his swing with his inner wrists so he could do it. You'd feel his fingers wiggling while you held his hands to cross the street. He'd do it absent mindedly while watching TV or doing anything. And that was the first thing that made me raise an eyebrow.

At the end of kindergarten in May 2006, I mentioned it to his teacher. She used to work with special needs kids and said the only other time she'd seen that was with autism. This freaked me out enough to call my cousin Kendra who has a wealth of knowledge on special needs kids. She put the autism fears to rest due to age, his incredible social nature, etc. But what was Spidey Hands? Who knew. It eventually grew less and less and we chalked it up to a "phase".

July 2006 - around his 6th birthday. That was the red flag. The Boy is incredibly facinated with language, letters, numbers, etc. So when he came and told me that, sometimes, he has to say a letter sound all day, I assumed it was a cool game he invented. So he told me, today it's R. And began saying "er-ruh" and using as many words with the R sound as possible. Still cute and inventive. But then he continues saying it ALL day. And it morphs from "erRUH" into this kind of strange rolled R sound so it came out more like "er-DUH". Like the word "great" became "ger-date". The R/D sound that came out had almost a tongue-clucking quality to it. Like slapping the tongue down hard to get the sound. So I asked him, does making this sound feel good in your mouth? And he said, "Well, my body WANTS me to make this sound. And I don't really feel good until I do." Yah. Bells, red flags, the works. That's just not "normal". I told him that it probably had to do with his love of language and letters and not to worry about it - it would pass. He calmed down. I panicked.

Over the next few days, the W sound evolved and it was a big cheek-filled "WUH!" sound. It was so compulsory sounding at times, it freaked me out. But I stayed calm and reassured him he was ok. This sound upset him because he seemed to not be able to control when it burst forth. We avoided a large list of sounds but saying things like, "Hey, you already have the R and W sound....let's not add the T sound right now? Do you think you can control that?" and he usually could. And keep in mind, this is all developing over a span of maybe FOUR days.

I mentioned it to my birth-mom on a call because I was wondering if The Boy had some kind of OCD. I mean, his actions all seemed to compulsory and repetative. I know so little about any of these things, it was the only thing I could put a label on. I described things to her and she said it sounded a lot like my half-brother when he started having Tourette's symptoms. That floored me. I had been told he had TS but it hadn't stuck. I mean, I didn't know TS from a fly and he's a normal adult now so I probably just let it pass into the ether. The only thing I DID know about TS was from a documentary I had seen years ago on a worse case adult scenario that involved brain surgery to control. So yah, I freaked because I'm very good at worrying about things that aren't confirmed.

A few days after this all began, The Boy had a regular checkup with his pediatrician. Dr Amy (as my boys call her) rocks. I didn't mention it because I wanted to see if she noticed any of his habits. She did. At the end of his checkup, she asked, "Is there anything you'd like to ask me? Maybe in another room?" Like I said, she rocks. So we discussed it and I told her my fears of Tourette's and it being in my genetic family, etc. She suggested I keep a log and let her know if we wanted to pursue a specialist of some kind.

So, after a week of watching his symptoms wax and wane, my sis-in-law said, man, get that doctor on the phone. Don't wait. Dr Amy called me before I could call her. She referred us to a psychiatrist. That word sent cold down my spine. I have no great faith in psychiatrists. I think of them as impatient pompous asses who throw perscriptions at you to get you the hell out of their office. And I was not about to medicate this beautiful mind (and yes, I'm aware of the irony of selecting that phrase). So I went in prepared for full battle. I was ready to go through the niceties until I had enough reason to take The Boy by the hand and walk out of there.

God rocks. He rocks BIG. He rocks even when my faith sucks.

I prayed my butt off and asked every praying person I knew to pray, too. God, just give me the right doctor for The Boy. Let her be someone we trust and know is ok.

God rocks.

We met Dr J and she was everything I prayed for. She restored my faith in psychiatrists. She is sweet and intelligent and knows how to talk to The Boy. She asked him all the right questions. I could see how she was eliminating the possibilies...ADHD...nope...OCD...nope...and so on. When she began talking to him, he was a wiggling mess. Once he trusted her, he was much more mellow. She confirmed that he had TS, with obsessive compulsive personality TRAITS. Not OCD. He also has signs of anxiety disorder which is comorbid with TS. So that's something we have to watch out for. She also suggested a non-med therapy. Cognitive behavioral therapy. He'll meet with a play therapist - she'll play with him. How cool is that?! She'll teach him to recognize the impulse feelings and either control them or divert them to a socially acceptable action. Like, the verbal or audible outbursts might be diverted to Spidey Hands under the table. Much more socially acceptable. And as a parent who wants to avoid all forms of rejection for their child, that sounded good to me.

So that diagnosis was August 30th. Since then, we've discussed the diagnosis with The Boy. I've had him read this awesome kids' newsletter from the Tourette's Syndrome Association. It's written by kids with TS for kids with TS. He asked if all those kids really had TS and I said yes. That seemed to really hit him - like he's part of something bigger - not alone. That was SO cool to watch. Then he asked if he could write one and they have an email address for just that. So he wrote the coolest email to the TSA. They replied that his write up will be in the fall edition in mid October. You can bet I'll have a link to that right here when it's out!!!

The Boy will tell you that he can control his TS. He's very positive and that helps me and dad, I think. Right now, his most noticable tics are exaggerated blinking and a kind of "clearing your sinuses snorting". The eye thing can also include rolling his eyes way up so that he has to look at you from under his eyebrows. It lasts for just a few seconds but it's rather odd to see if you're not used to it. Today, his exaggerated blinking and eye rolling was really bad. He had trouble reading with me tonight. So I read mostly to him. That gave me this tiny pang of sadness - because I know this can escelate as he ages. That fear is the thing that is currently haunting me.

Again, we'll just see.

Oh, the whole candida thing I mentioned way up top? There are multiple studies showing that being on an anti-candida diet can actually help lessen the tics. They feel the candida plays some role by messing up neurotransmitters. I don't have it all in my head but I've read enough to know that we're glad he has a great nutritional life habit already.

If you want a great nut-shell view of TS, this link has a great FAQ that sums things up nicely.

Thanks to you all for prayers and nice words.

My next updates will be much shorter. I promise.

Sunday, June 04, 2006

Quick Introductions...

Someone asked me who all of the members on this blog were. So I thought I'd introduce you all real quick. I've only invited people I feel comfortable sharing this with.

gorillarod - my birth-mom, April. She was nice enough to share her genetic makeup with me.
Kendra - my cuz Kendra. She let's me vent and never judges.
Diane - my cuz Diane. She's my inspiration for all of this.
Trish Ryan - my pal Trish from my Boston church. She supports me no matter how hairbrained the idea.
Katrina - another cousin from across the pond. Her success in getting healthy is another inspiration.
jlefebvre - Jean is another pal from my Boston church. She's another cool woman that supports me no matter what.

I'm just super lucky to have such wonderful supportive people in my life!

Sunday, May 14, 2006

The glamor is unmistakable.