Our cute kids were asked to do a musical number in church today, and so we picked out a nice primary song they could do together.
Caleb chose to play the piano and not sing, and so that left Micah and Jewelia alone to sing. We really thought about having Macey try to sing with them, because we remember Jewelia first sang in church when she was 3, but I guess Macey is still a young 3, and a bit tempermental.
We did practice a little bit and tried to see if she could learn the words to at least the first part. In the end she could sing the first sentence, but not much after that. So, while it was cute, it probably would have been a little weird to have her sing one line and then yank her off the stand in church, or leave her not singing for the rest of the song.
She did like to practice with the other kids though, so we decided to keep our home practicing video of ALL the kids. I think they're pretty cute.
So, for those of you who weren't lucky enough to see them in church, here is our at home video of the kids singing "When He Comes Again".
Yes, this is long post, proceed with caution, but it's about a condition concerning Caleb.
This is our little Caleb. He's a good kid mostly, although he does have his moments. He tries to listen and do what he's told. He does well in school and at the piano. He's probably a pretty average 8 year old. He likes to play video games and ride his bike.
Well, over the last little while we have began noticing a few little how should I say.....quirks? oddities? hmmm....well, all our kids have their little quirks, but this something about Caleb just wasn't quite right.
Now, before I get into this, I don't want to be judged. I know there are people out there that are going to be all upset and wondering why are we trying to find things wrong with our kids. They might think, "Why can't you just love your kids and stop trying to make a mountain out of a mole hill?" Well, really, we're not trying to find faults, but sometimes something really is out of the ordinary and it starts affecting the kids themselves. How do I explain this?
Well, over a year ago we started to notice that Caleb would clear his throat or make these gulping sounds a lot. He would do it all the time. It was kind of annoying at first, then it was kind of embarrassing when we would be out and he couldn't answer a question or respond to someone because he was gulping or making these little noises in his throat. Oh, well, I thought. I guess he just has a lot of saliva or something.
Well, it continued, and then he began doing this little sniffing thing where he would be constantly sniffing and scrunching his nose. I remember asking him about the swallowing and he just said that he had to because his mouth felt weird. OK, well, maybe he had some sort of allergy issue or something.
So, we checked into that to make sure he didn't have any sinus issues or allergy problems and he was all good.
As time went on, Caleb's gulping got louder and more constant, and pretty soon we could hear him pretty loudly at the dinner table, only this time he was making a high pitched squeaky noise. I'm sorry to say when he first did this I went almost absolutely insane! By this time I had been reading a little about what they call "tics" and that you aren't supposed to bring attention to them or it makes them worse, but I couldn't help it, I just couldn't imagine that he could not have control over this noise and I was just yelling "STOP IT!!!" (Sorry, bad mother moment.)
Anyway, that little noise ended over time, yet the gulping and swallowing continued and then his nose scrunching turned into a nose scrunch with an oooh face with his lips pursed, and then into a nose scrunch, ooh face, eye wink thing.
Still no big deal? Caleb was in a local Nutcracker ballet with Micah over Christmas, and he was also in several school programs. As I went to these and video taped them and watched, I noticed Caleb was very different than the other kids. The other kids were all singing or acting or what not, and Caleb was too, but the whole time he was making these weird faces over and over. It was just odd.
I asked his school teacher about it and she said she had noticed the nose twitch thing and noises but she figured he must have a cold or hay fever or something.
So, I decided to bring it up with the doctor at his next checkup. It was interesting, that the doctor noticed rather that he thought Caleb blinked too much other than the other tics, but in the end he said they were tics and completely normal and he may or may not grow out of them, but if they became a problem that he would possibly need medication. No worries though for now as long as he was OK socially and it wasn't hurting him.
So, life went on. It was Christmas time and there was a lot going on. Maybe he was just stressed or tired. For a little while, it seemed maybe it wasn't such a big issue anymore.
Until slowly but steadily, the tics began coming back and getting worse. This time I could hear Caleb gulping, clearing his throat and swallowing at every meal and when he talked, or it would stop him from talking. His facial tics were nose scrunching, ooh faces, eye winks, and then he was doing this kind of a cheek chewy thing. (Sorry, it's hard to explain all this.)
But, oh well, still. I wasn't going to make a big deal of it until Caleb came to me and started telling me that he didn't like to keep swallowing because it hurt him. He said he had to keep swallowing or his throat would hurt. I asked him about his nose and facial tics that I think he was less aware of because earlier I would ask him about them and he wouldn't know what I was talking about, but anyway, this time he told me that his nose hurt. He said he had to scrunch his nose and make the faces or it hurt him.
Something just wasn't right about this, so I called the doctor and they said they wanted him to see a neurologist at the children's hospital that specialized in tics. So off we went.
The neurologist was wonderful and checked Caleb all out. He checked into possible reflux problems or nose and throat issues and there were none. He checked out all that neurological stuff, and Caleb was good. But in the end, he said Caleb has a tic disorder which can be classified as "mild Tourette Syndrome".
Now, the ugliness comes. What to do about it? Well, first off, there are so many ugly comments that we have been getting from people who think it's fake, it's not real, it's my fault for "pushing my kids too hard", etc. That, and of course there are all the people who are looking at me like why am I trying to find things wrong with my kid? Why don't I just let them be normal without having to put a label on everything.
Well, so I'll tell you. No, it doesn't matter to me that Caleb makes silly faces or these little sounds or has these OCD tendencies. No. But it hurts me as a parent when I see my little boy hurting and asking me for help to make these things stop. So, yes, I went to see if I could stop the hurting.
Did I?
No. That is the frustrating part as well. The doctor says there is medication, but his tics are not severe enough or socially he is not having problems as of yet to want to go that route, but he does want Caleb to see a specialist that can maybe help what they call "retrain his brain's behavior thinking" to possibly lesson the tics and certain behaviors.
But, where does that leave us? It will be a while until that appointment. But what do we do? If it is true Tourette's then this is for life. For LIFE! Yeah, so what, some little tics that come and go, but what do I tell him when even tonight I tried to tell him how everything was OK because it wasn't his fault and he wasn't making faces on purpose, and he says to me, "But it is my fault because I am doing it on purpose because I have to or I will hurt."
I don't understand it exactly. They describe a tic as an uncontrollable urge to sneeze or cough, or an uncontrollable itch, or like having the hiccups. You can't help it. You can try to quiet it, but usually it just comes out worse if you hold it in. But it's the pain thing. Troy says he's not in pain because he keeps doing the tics, but I see it more as I don't want him to be constantly having his face spas out to avoid the pain. ?? It just seems awful to me. And plus that he doesn't understand and he doesn't know what to say to people if they ask him if he's making a face at them on purpose. Right now he will say yes. But it's not true exactly.
I had to document a bit of his tics to show the neurologist. Here's a little clip to give you an idea of his swallowing noises and a little bit of his nose scrunching although not much. He was just reading a book here and he didn't know I was recording him: (Don't worry, this is not public on youtube.)
As you can see this is just a few things that he does and this was minor. There are times usually right after school or before bed when it is non stop. It seems like he will either be constantly swallowing/gulping with few facial tics, but then other times he will be making facial tics that are even more pronounced like crazy and it's almost painful to watch because it looks like there are so many muscles involved.
This is a 3 second clip which shows his facial scrunch he does:
See, it's not a huge deal, but imagine seeing him scrunch his face like that over and over. That was what it was like tonight as I tucked him in. That, or sometimes his face almost seems to get stuck in the scrunch position. It's like he will scrunch it all up and then it just freezes there like he can't get out of it for a few seconds.
We really don't know what to do right now. We aren't going to medicate him, we are waiting for the specialist appointment, yet he is still telling us that it hurts whether that means unless he tics or not, I'm still figuring out, and I don't know what I'm supposed to do. The doctor said to tell the school staff who is around Caleb so they are aware, and whoever so they will know he is not being rude or bad mannered, or that he doesn't have some nose throat issue, but then what? Wait and see? Wait to see if he gets teased or can't take the constant tics? I feel like we went to the doctors yet there is nothing to help.
And so yet, with all the comments about how I'm a terrible mom and it's all my fault, or who cares anyway, or it's fake, or it's not real, or why are you telling me this because it doesn't matter.....I don't know what to think. Some people look at me like I'm trying to get more attention or like I'm one of those parents who like their kids to be sick for the attention or something and I don't want that. I only want Caleb to be happy and for people to know he's not being funny and he can't help what he does. No, I'm not taking this diagnosis as a big deal, but at the same time, it hurts me to see Caleb frustrated, and it hurts me that even if I don't think it is big deal, how can others tell me that it's fake? All mixed feelings here. I'm sure things will get figured out over the next while.
It is true what they say though. They say when you have Tourette's that it all seems to go away when you are in something you are passionate about. And I don't see Caleb tic while he is playing the piano. Only once when he was sick at his Christmas recital, but I've been watching him and he seems so normal once he's playing. Maybe that can be his escape.
Here we are--12 years together!! Today we celebrated our 12th year wedding anniversary.
I think we look pretty good considering. Don't we? Here's a picture from our wedding day:
We have both been so sick over the past week. It was hard to say if we were even going to celebrate our anniversary today or not.
But we made it out. We went out to dinner using a gift card we had so it was all free, and then we grabbed some ice cream using another gift card. Love the freeness! Woohoo!!
Troy ate so much food, he had to come home and relax. Ahhhh!
It's so funny though, we were hardly gone from the kids at all and all I can think of is them! I was good, really. I didn't bring up the kids at dinner and I only called to check on them twice. But still, I thought, gee, what can we get for the kids!?
So, as we stopped by to grab our ice cream, we just happened to see some really cute hats for the boys that we picked up, and oh how cute are they?!
I refrained from buying all the cute poofy skirts that the girls would have looked so cute in, but I had to focus really hard.
Anyway, back to us---we've had a great 12 years and here's to many many more!
