Monday, April 14, 2008

Tics and Stuff

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lil' Bro and the obligatory Bath Time Mohawk

Classic Pokemon Boy

Classic (Dorky) Me


That girl said...

I am so glad I found your blog.

I have an 8 year old boy who is mildly autistic, he has aspergers. This week, they told us he most likely has tourette syndrome as well.

Well, I've cried all day, read all night and I am numb now.

The best I can hope for is that it will be 'mild' and we can make it through.

I need to 'talk' to (or in this case read) other people who are doing it, and find a way to make it okay in my head.

It was hard at first to accept the autism as well, it's just now it's a double diagnosis.

I am terrified that he'll be bullied. that is my biggest fear.

sorry for rambling, and thanks for listening.

If for some reason, you want to get in touch with me: is the way :-)

Darlene said...

Geez...the tears are flowin :(.....

You're a great Momma.
A really great Momma!

That being said, I think you handled the situation like a pro, no, I mean it, times like those are intense and we can often loose it and fall apart in a heap of tears, but you didn't. You held it together and were strong for those 2 beautiful boys.

you're a stud
I mean a studette

Praying for you LL
hard praying

xoxoxoxoxo darlene

Mary Ann (Moanna) said...

I wonder if they've heard something on the news? There have been a few stories on the nat'l news recently of women who killed their kids. There are so many things for kids to worry about these days.

Anyway, I feel sorry for you having to deal with all of this "stuff"...

Keeping you in my thoughts.

Mary Ann (Moanna) said...

...and I didn't mean that I pity you, just that, geez, how many things must you deal with right now? Your job changes, your ex moving, the effects on your beautiful boys...too much for any one person to handle!

All of that makes me think that God must be busy right now except you're saying He's taking care of you. I mention that out of admiration for your spirit, not that I want to make God mad at me! :)

Jane said...

Hey there lovely!

I am resonating with your words here BIG TIME on so many levels.

Max has quirky tics with his Asperger's. Mostly obsessions with things, but tics too. Every now and then, I'll hear him with a new tic. It could be twirling his hair endlessly or making a noise that imitates something like a siren or an alarm. Most people would be driven to drink excessive amounts of Martinis. I just feel so used to it by now. Sometimes I have to yell at him to stop. Other times, I ask him to teach me how to make that sound.

I've also found that he gets a little quirkier when things feel out of his control and out of his routine. With his Dad being unpredictable and often of the picture these days, I see more quirky and ADHD behavior coming out.

Still, God gave us beautiful, special and amazing children. For that, I thank Him every day. Some of my greatest lessons I've learned from Max.

Kendra said...

Thanks for the update . . .made me very sad, but I'm so thankful the Lord has you there with those sweet little men. You are right - HE'S got them covered! love you