Tuesday, March 25, 2008

It matters to me

As some of you might know from reading my BabyCenter blog, I've been dealing off and on with my son's tics. He has a combo of motor and vocal tics that have lasted over a year, hence his Tourettes diagnosis. Most times you would never know he has tics, and other times, they're more obvious.

I vacilate between being open about his Tourettes and keeping my mouth shut. After all, his issues are his, not mine. But at the same time, by keeping it hidden, what good does that do? Don't most "disabilities" only get more accepted with an open mind, love and support?

What I've found the most frustrating about Stink's situation is that just when he seems to be doing well, he gets a bad bout of eye rolls or coughing tics. Some of it is food related. We're having him tested. Some of it is excitement based. But alot of it is just the nature of the tic.

If you're interested in reading more about Tourettes, you can find it here.
I can promise you this: It is not as bad as the media makes it out to be. And more people have it than are even diagnosed with it.

The main thing I'm trying to remember is to not get stuck in the "let's fix this" mode. Tourettes is a neurological disability in which certain wires get crossed. Tics change in nature from eye rolls to shoulder shrugs to blinks. It doesn't mean a person is going to bark and curse like our lovely media loves to portray. It simply means that sometimes they get tics.

Medication helps a lot when a child is older. For now, we're using homeopathic techniques. And we're lucky, because tics or not, Stink is about the most popular kid on the block. They don't affect him at all. At some point, if the tics continue, kids will ask. I'm thinking of getting a tee shirt made for him, "I have Tourettes, What's Your Excuse?" but again, that might be in bad taste. The verdict is still out.

Sometimes, like the past few weeks when his tics were not so great, I feel an overwhelming sense of sorrow. It is hard to see his outside not match his inside. I worry about his future. This boy is so open and sweet and bright. I would DIE if someone made fun of him for something he couldn't control.

But don't kids get made fun of regardless? Or am I just making myself feel better? Maybe, but what choice do I have?

I'm trying to remind myself that a child with Tourettes with strong parents and confidence is heads and tails over a child without Tourettes but no self esteem. And sure, I can be upset at times. Who wouldn't be? But my child is perfect just because he is here. He is not a Tourettes kid first. He is a kid who is the light of my life, smart, funny, sensitive, talented, adorable. Oh, and he has Tourettes.

Tonight, he had his best friend from school come over. As always, I never see such joy on Stink's face as when he's with this child. There's no such thing as tics with these two kids. It's all about muddy mudpits, cars, Scooby stories, begging for pizza and laughter.

I'd love to hear from any of you who are experiencing the highs and lows of raising a child with an unexpected diagnosis. Because really, no one has everything.

And, as Meno once said, "No one gets out of here alive."

More of my writing can be found on Goodhousekeeping
& Babycenter. I write under the name Andrea Frazer. Drop me a note! I’d love it! Or don’t.


freefalling said...

I had epilepsy when I was a kid.
We must have had very reserved kids at the school I went to, coz I don't ever remember anyone ever being nasty to me!
Nasty, wouldn't have bothered me anyway.

It just wasn't an issue for me.
It happened.
I was too busy doing kid stuff to be bothered by it.
It was kinda like an annoyance more than anything else.

Anyway, how many kids (or adults) out there are "normal" these days - Meno's right - no one misses out on their own bit of freakiness!

Valerie said...

my two favorite things you've written:
'no one has everything' and
'no one gets out of here alive'.

amen that.

everyone has something. some are more serious than others. i grew up in a family where we didn't talk about our problems...even to each other. it made it hell, especially growing up with a father who had Alzheimer's..before it was even discovered.

we didn't talk about it.

you, my girl, are a smart person. i think you'll know when's a good time to talk and when to not.

will people be mean? you betcha. and that makes my heart break for you and for Stink. but you are a good mama...and you will be there to help him through the hell.

love you.

TroyBoy said...

It seems as though you already have a preety outlook on the situation, but maybe don't look at it as a disability. It something, one of the many attributes, that makes Stink who he is. Some attributes just suck more than others and some are awesome, like his sweetness of which you speak. I don't know exactly what I am trying to say here other than he is really, really lucky to have the mommy that he has....oh, and no, don't keep it a secret...share it, which will help you and it will help others.

Ramblin' Red said...

Mama P,

Seems like this "special" parenting worry-bug has been in the air lately...hence my latest blog post, wherein I quote another blogger, who quotes yet another blogger, going through the same thing...I think you'll like following the links and reading what they all have to say.

(hugs) and I am all for talking about it, b/c while they are the kids' disabilities, we are the ones trying to parent them, and it's amazing who comes out of the woodwork when you talk about that.

Monnik said...

He'll get made fun of, but so will every kid on the planet.

My mom is blind. She is also the most amazing person I have ever met. I could go on for hours about her accomplishments (raising 6 amazing kids, getting her masters degree and having a fantastic job, etc.)

She grew up with parents who knew she'd face adversity, but told her it would only make her stronger. They loved her as she is, treated her no differently from her sighted siblings, and made no apologies for her disability.

Stink will likely grow up to be a compassionate, understanding and slow to judge man because of his disability and the experiences it brings.

So in a way, he's getting the better end of it all, isn't he?

Gretchen said...

Ebbs and flows. Highs and lows. That's how I would describe living with a child who happens to have disabilities. Is that any different from the life anyone leads? Probably not a whole lot. It's just magnified for me. The highs are VICTORIOUS, and the lows are lower than a snakes belly. There's fewer grays/in-betweens. For me. Right now, we're in a heart-break time. Yet, there are blessings all over the place. Calms in the storm. The eye of the hurricane. Those times are when I cry (usually) take a deep breath, and regroup for the next wave.

Meno's right, BTW. ;)

I'll pray that you continue to have peace and perspective over Stink's development. xxxooogretchen

p said...

I think you have such a good outlook, and Stink is so lucky to have you. You are absolutely right in saying that every child gets teased/made fun of/put down at some point. That goes for kids with and without disabilities alike. We try our best to protect the ones we love from any harm or hurt, but deep inside we know we can't prevent it all. I hate to admit that much of what I know about Tourettes is from what I've seen on TV or in the media. I think it's wonderful for you to discuss your fears and hopes about your son's Tourettes diagnosis. It certainly opened my eyes. And that picture of Stink and is friend is one of the cutest stinkin' pictures I've ever seen.

Jane, Pinks & Blues

pinks & blues girls said...

Sorry, that comment was from me... pressed "submit" too soon. :)

Ashley said...

Well said, Andrea. You know my experience with Tourettes, and I can't say anything but positives on how you're handling it all. You're absolutely right that Stink has major advantages over kids who don't have supportive, loving parents or self esteem. In comparison, having Tourettes is a tiny setback, if a setback at all. You are just the mom Stink needs!

His Girl said...

We've talked about this before, so you completely know I'm with you on this... I love that you love your kids so much that it hurts to see them in any kind of situation that is less than perfect. I love that he has YOU to be his champion! I love that you have a sense of humor, a sense of compassion, and a sense of urgency about making sure Stink's memories of his childhood are full of love, light, and laughter.
You're doing a great job, sis. You know how to reach me if you need a shoulder, too. I totally get it.

Princess in Galoshes said...

I think he's already far ahead of the curve, to be as popular as he is. Having good buddies will see him through a lot. Not to mention, having great parents.

meno said...

Yes, everyone gets made fun of for something. Often something they can't help. You know, like being tall.

Love to your beautiful boy.

liv said...

well, as you know from my emails, D has PDD-NOS. i try to explain to people that it's sort of like not having all the pieces of the autism puzzle but enough that there are glitches in day to day life. the problem (as i see it) is that since D looks the same as other children, there's no 'excuse' for what could be termed erratic behavior. other parents just think he's a bad kid or i'm a bad parent. he doesn't LOOK like there's anything wrong with him so how can there be?? it's very frustrating.

Steph said...

You have such a fantastic attitude. Your babies are lucky to have you as their mama! Teasing is part of the kid thing - Tourettes or not - but when they have good mamas and papas to come home to kids do just fine.

Mama P said...

I don't normally respond to comments because, well, I'm a lazy ass. But wanted to say thank you to everyone who has been so nice to me. Now if you'll excuse me, I have a sex column to write. Which means another night Rex will be sleeping alone while I complete my deadline. There's some irony in that. I find it humorous. Rex? Um... not so much.

momma's heart said...

What a beautiful post! We are having a run on ADHD symptoms, so I can relate to the times when your heart is just breaking.

I really think that because he is very popular, he won't get teased much, and maybe not at all. Kids who are confident and well-liked can sail through quite a bit without scars.

Later, you can role play with him about how to calmly respond to questions about his tics. But kids may not even take notice. My younger son, 4, doesn't even notice the tics Daniel, his brother, has.

capacious said...

My ex-boss had Tourettes. He would click his fingers together and leap into the air when he was stressed. I think that if he had addressed it with people individually, everyone would have felt deep compassion for him, most of us did anyway. It was never mentioned. He was a screamer, and it was easy to imitate him when one had been the object of his fury. But in general, he was a good man and we honestly never really thought about it much.

You seem to know exactly what you're doing. I can't know what it's like to have a child with Tourette's, but it seems like it would be good if he could explain it to other kids when necessary. That disarms them to some extent, if he says, "I have this and I can't help it and that's all it is. There are wires crossed in my brain. You can be mean about it or kind. Take your pick, and you better be nice, mofos." He wouldn't have to say that last part. But I would kick some ass if anyone was mean to him. Call me if you ever need ass-kicking. Those little ones are really easy to put the hurt on.

Pam said...

I think when you're trying to hide things it makes them seem worse. I grew up in a world where differences were shunned and hidden. Making something a secret gives it power over your life. You have the best approach possible, be open and honest and don't make it a big deal.

Kids tease each other no matter what, it's just part of growing up. Your kids have great parents to come home to, a solid and loving home. They will do fine.

Now that I'm back in blog land I will have to catch up on the rest of your posts.

ms chica said...

Kids can be cruel, and so can adults. Kids prepare us to be adults.

Stink is lucky to have a loving family, and an attentive advocate.

Terri said...

Son #2 had Non-hyperactive ADD and learning disabilities. I tried the anti-depressent the idiot psychologist suggested, and then I thought, why should anyone have to take a pill because they are upset they aren't doing well at school? I mean, of course he was upset! I would have been upset if he hadn't cared!
Anyway, we got him help. They taught him ways to work around his learning disability and now he's and A and B student and we haven't even mentioned it to the other schools he's been to.
So, my advice to you is, do your best to help him over come any diabilities the tourettes causes him, be honest with him about what's going on and then let it go.
As for the teasing, if it wasn't about the tourettes, it would be because he's fat or skinny or has curly hair or straight hair or wears glasses or doesn't wear glasses....As Roseanne Roseannadanna said, "It's always something!". Don't make him feel like some kind of "special case" because of other people being nasty...help him find a way to deal with ugly parts of life and let it alone.
Sometimes I think we moms and dads make problems worse for our kids by all our trying to help. You know?
And you try not to worry. Looks like he's doing o.k. so far!
God bless!

Susie Q said...

I have no worries with you sweetie. Stink will be just fine, nope. Better than fine because of you.
I think you know that my nephew is autistic. There are days when even the smallest victory is Heaven sent. Today he made the sign for eat because he wanted his Goldfish crackers! I had to pull over and open his back pack and oh did he smile!
Then there are the days I cry all the way from his school to his babysitters. I love this child so much and worry so much and want him to have all he can have and be all that he can be...uh, not necessarily in the Army. : )
My son has Asperger's and that can be frustrating but oh there are blissful days that are so perfect...much like your Stink with his sweet friend. On those days it is all about fun and being a boy and how good life can be.
No one has everything...and some of us just have a little extra to think about. That is all it is.