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.