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Tourettes and Behavior, Part 3

Supplements

Tics have improved 90% from 7am to4pm. By 5PM, when he’s tired, we’re at a 60% improvement. Almost no verbal clicks or sentence interruption. Minor shudders only.

Behavior

Other than having the teacher write to me saying that he and his best girlfriend, Miss Z, had to be “talked to” for playing tag by patting each other on the butt, he is doing awesome.

NOTE: Because I have written this down, I will be cursed and he will start baying like a horse and be suspended for setting the lunchroom on fire tomorrow.

Good night.

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Tourettes and Behavior, Part 2 (Supplements, Part 2)

Supplements, Day 3

* Lots of shuddering, but hardly any chirping. I’m scared to even say anymore about that.

Behavior, Day 3

Much easier day today with a lot less arguing. Even if they forgot a few chores and I added in 5 minutes of extra cleaning later, no complaints. Again, let me fall down dead.

Okay, I’m back up. Here’s my real post below.

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As you all know, I’m hardly an expert on behavior. But I can speak for the facts, and those are that my kids really like each other. It’s not because my daughter sucks it up to hang out with my wacky boy, or vice versa. It’s because they truly respect each other as people.

I’ll take a little credit for that (since I can’t take credit for curing T.S.) and go so far as to say that you have to show kids how to treat each other. This often means playing bad cop and not worrying that their self-esteem is going in the toilet because, God forbid, you make them clean the toilet.

I don’t know about you, but I think our culture does such a disservice to our kids. We try to do everything for them. We feel guilty if we can’t. Or we try and over compensate by spending our life savings and credit cards on extra curricular classes and “feel good” artificial experiences when really… really… what they need is to know that they are okay just because they are.

When I began to embrace this idea, I felt less worried about the T.S..

While selfishly I hate the noises it brings, I welcome the invitation it offers me. Every tic seems to chirp, “Andrea, this is one more opportunity to live life on life’s terms. Since you can’t fix the kid, give up the idea that he is supposed to have a perfect life. Let him, not you, earn that confidence.”

So with that, I give you 10 tips for getting your kids to clean up after themselves because, gosh darn it, you shouldn’t have to. (And you’re doing them a service by letting them take responsibility for their actions. I swear. Trust me. Or don’t. I’d love your opinion)

10 ways to get your kids to work

1. Have a family meeting: Let them know you love them to pieces, and because you love them, you’re going to help them be more part of the family

2. Have them come up with ideas of things they can work on: Some ideas you’ll keep: Taking out the trash or clearing the dishes! Others you will ixnay, like: We get to go to Chuck E. Cheese every time we remember to flush! It’s not the ideas you follow up on with the kids that count. It’s listening to them that makes all the difference. (But in the end, it’s a dictatorship. Mom rules. So sorry!)

3. Don’t install more than 3 new things at a time: I heard once that kids can’t take more than 3 changes at a time. I’ve found that to be true. Work on those for 21 days until they become a habit, then move on to the next three. Want to write a list of 100 things that need work? Great. But don’t implement more than 3 at a time or you are headed for frustration.

4. Don’t expect perfection: Tuesday, Stink finished “washing” the back windows. They are more spotty than before he started. But the dirt is off. This will still be easier for me to clean tomorrow. I’ll take it!

5. Stop Feeling Guilty Already! Having our kids work, even if they cry and complain at first, is the best gift we can give them. I find it even more important if they have “special needs” of any kind. If my kid is going to tic his way through 4th grade, he’s also going to do it without food on his face, an organized back pack and a good understanding of when it’s appropriate to tell a joke.

6. Laugh! It can’t all be about work. When it’s done, don’t over compliment them. “Congrats on your mediocrity!” Stay calm, say thanks, and then pull out a board game. It shows that life is about work and play.

7. Stop working at a certain point in the day: It’s so important to enjoy our kids, even if they are bugging us. The less stressed you are – which means you aren’t trying to Ebay while getting them ready for bed (Ahemmmmm) the easier it is to appreciate them.

8. Come up with an allowance: I used to pay 25 cents/day. I’d have the nickels waiting in a family jar in the center with two tin jars on either side for Stink and Pip. When they did their job, I did a fine job of letting the coin clink clink clink in the can. This helped on 2 fronts: They got the instant gratification of money when they did something. When they argued or complained, I made them walk over to their jar, take out a nickel, and put it back in the family jar. If they complained about that, they got to put 2 nickles in.

9. Don’t be such a task master! When we used the jar system, I’d often have the kids take random nickels from the jar and pay themselves. “Just for bringing your dish to the sink without asking!” I’d say. Encouragement is good.

10. Give kids the day off. We try not work on Sundays. No beds need to be made. No major chores. We just put away what we take out.

We have a LONG way to go, but this is what I do to keep my sanity. Would love to hear your thoughts!

Now if you’ll excuse me, I’m off to search for cool laundry baskets. Guess what job Stink is getting when he turns 10? I know. He’s so lucky. As pip likes to say, “Stink is going to walk around with a lot of dirty clothes, Mama!” (Smart ass. She’s right, though.)

* Photo taken on Wednesday morning. They got up, made beds, brushed their teeth AND did their hair by 7:30. All on their own. It’s a miracle!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (My big win? If my kid is going to shudder, he’s not going to do it with yukky hair and yellow choppers.)

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Tourettes and Behavior, Post 1 (and Day 1 of Supplements)

Supplements, Day 1

Above is what I give to Stink every morning. I am adding in some other nutrients I ordered by mail toward the end of the week.He’s still taking his 2mg/Intuniv for focus.

So far, no changes. Lots of low verbals that interrupt his speech about every 20 words. My friends swear their kids don’t notice. I have the best liars pals in the world.

It will take about 1 week to see if the supplements make a difference. But the difference my support system has made on me this week? 100% improvement. (Get yourselves some supplemental good people in your life, pronto!)

Andrea Crackdown, Day 1

I’m putting 10 items/day on Ebay first thing in the morning to bring in a little cash. I’m doing well!

I’m organizing my office.

And also… here’s the big news… I’m attempting to have some fun again! I’ve been a bit ridiculously focused on “fix it” mode when, really, there’s nothing to fix as far as Stink is concerned. If he’s happy and content, then I need to be also. It’s a process. But I’m determined to get there.

Kid Crackdown, Day 1

Fears

When Stink was diagnosed 5 years ago, I feared the worst. I worried he’d be ostracized, anxious and depressed.

Reality

None of those things happened. (Not to him, anyway. His mother? Whole other story.) Stink is thriving, happy and confident. In fact, he’s more than confident.

Reality Check

At times he can be a down right know-it-all at all the wrong times and, well, I blame myself for that.

Somewhere along the way I did a pretty good job at nurturing his soul, but not a great enough job encouraging good habits.

He’s also more crafty than I would care to admit, as well as whiny, argumentative, and more sneaky/jokey than Fred and George Weasley.

And guess what? My daughter – my neurotypical organized A-personality driven Hermione Granger – she’s brilliant at throwing a bedtime tantrum and leaving her toys all over the place.

With our house slowly being put back together, it’s operation Crack Down around here. We’re cracking down on putting stuff away, ending the back talk and establishing peace.

Not for one second do I think, “Oh, poor Stink with the T.S… he can’t be expected to do his share based on impulse control issues.”

Bull.

He can and he will.

So much of his personality has to do with being a nine-year old boy, T.S. or not. Same with my eight year old daughter.

Here’s the new rules and consequences we have.

New Household Rules to keep Mama from losing her brain for a More Relaxed Atmosphere

Morning

* Get up with the alarm

* Make your beds and get dressed

* Breakfast by 7 (Pip showers in morning, Stink at night)

* Breakfast dishes away

* Out the door by 7:45 to walk

If either of these aren’t done, and I have to remind them, they get 5 minutes of cleaning per infraction after school.

After School

* Snack for 30 minutes

* Homework

* Dinner around 5:30

* Pip sets table/Stink clears it

* Bedtime routine at 6:30

* In bed by 7 to read, lights out by 8 after prayers

It’s been a bit rough of a start, but I’m holding my ground. I can’t do it all.

What do I need to do? Relax – not just about about tics – but everything. I can’t be C.E.O. of Character Development, Tic Police, Head of Eating Operations and Chief Maid. I need help, and I’m not outsourcing it.

Something that is important to me, dare I say more important than banishing tics, is self-reliance. It’s my job to have both my kids be functioning adults. If this means more work for a while and less play, then they can deal with it.

And really, it feels glorious to type this while my minions do their 15 minutes of cleaning. Anti-child labor is very underrated.

Come visit me over at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

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Faith, Supplements and Hope: Welcome!

After everything we went through this summer and last Spring with UCLA and their “wonderful” Intuniv program, Stink’s tics are worse than ever. His focus is up, but what is the trade off? The ability to sit still while clicking 50 times/minute plus, oh this is a fun one, at least three shudders/minute? Should we get on yet another medication to help ease this? Maybe some nice narcotic? And then, down the road, shall we go with an anti-depressant to ease some of the social stigma from all the stares and questions about his tics?

NONSENSE.

I am easing away from this stupid drug and all these ridiculous labels about what it means to have T.S.. I always say it, but far greater than a “classification” for symptoms is confidence, and God bless Stink, he has it in spades.

I am not going down the drug route anymore unless absolutely necessary.

And, as fate will have it, UCLA isn’t returning my call anyway. I have tried, for 2 months, to get a hold of Dr. McCracken, via email and phone. He had promised me, after we thought we found a silver bullet in helping Stink’s tics and focus, to tweak the meds if there was a problem. HELLO THERE IS A PROBLEM! But where is Dr. McCracken? Likely busy with yet another study that is funding his research or perhaps a child with more severe issues than Stink.

Which is fine with me. I wish him no ill will. He is very good at what he does.

But I’m good at what I do. It’s called calling B.S. when I see B.S..

I will moderate these tics with diet and some better supplements and, in three months, I will have good news to share with you!

Until then, please love your kids for who they are, not their tics. They are worth it. Life is short. Our kids are growing up fast. Time, like our kids, is ticking. Don’t let fear and a medical community who only knows “pills” tell you how to raise your kid. If the drugs work for you, yeah! But if they don’t, do not give up hope. There is always another way. And that way, my friends, is perseverance and faith and some mama kick butt humor and strength. We’re all in this together.

Next post: Supplements! We started today. I’ll keep you posted.

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What Do You Do For Yourselves When Things Are Hard?

I had such a rough day yesterday. The school called over a forgotten lunch. There was a minor drama with one of my kid’s parents over a misunderstanding which has since been resolved. I was running late for everything. Stink’s tics were back in full force.

So I went to my comfort zone and indulged in a few too many glasses of wine.

Here’s the deal on the alcohol: Did you know that whether you drink one or 4 glasses of wine on a Tuesday, your kid will still tic the next morning? Not just that, but you’ll have a headache and look like crud along with it?

I really don’t think I’m an addict to wine so much as an addict to finding a solution for something that has no solution. It’s really kind of crazy.

Sometimes I re-read these blog posts and I think, “Holy Cow, Andrea, you are obsessed. Are you helping people deal with tics or just not willing to face reality – that reality being that your kid TICS. He’s fine. You’re the idiot.”

One thing I have decided this morning – as I run late again – is I’m not going to be a drunk slob if my kid has T.S.. I’m going to be someone fabulous.

Here’s to Day 1 of no booze for a while. I am going to Oktoberfest next weekend. I hope to enjoy a few beers there! But if I can’t, because my emotions are still in the toilet and I’m drinking to cover up pain over stuff I can’t control, then I won’t be crying in my beer. (Literally.) I’ll be the one with the Diet Coke and the short skirt giving Tourettes education to all the bartenders while my husband gets sloshed.

Good times.

What about you? When you’re a bit frustrated over stuff, what do you do to make it better in a healthy (or non healthy) way?

Andrea

 

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Sunday Podcast #2 – Tourettes, Tics and Discipline

Um, I was clearly kind of punchy on Sunday.

Below is my second of 2 podcasts. The basic point I am trying to make is that whether or not our kids have impulse control issues, it’s still super important to have a discipline game plan.

I remember my husband telling me, “Sweetie, we simply need to find a target and aim at it reasonably.” My response, “Yes, but what do you do when the target is always moving!”

Here’s the top things that worked for me

Drink wine
1. Find a support group (This blog, a private group I have)

2. Be open with friends (I have some awesome folk in my life)

3. Pray (It really works)

4. Find a prayer support group

5. Exercise

6. Set goals for yourself

7. Be honest – some days just suck. There’s no point in pretending otherwise. Just know you can always start over.

8. Yes, really, you START OVER. Every second that passes is a new opportunity to start fresh.

9. Focus on the kid and his/her gifts, not just the tics.

10. Work on accepting the tics you can’t change, changing the tics you can, and having the wisdom to know the difference.

This is a marathon, people, not a sprint. How I wish I had someone tell me that 6 years ago. But now I’m learning.

And, by the video below, I clearly also need a break! It’s coming! Our renter is all moved in and in 10 days, (count ’em) Rex and I are going to Oktoberfest for the weekend sans rugrats. Woooot!

http://www.youtube.com/watch?v=5Q3q1_fbOfA&list=UU7pCFMeJ6X2orNoFbxjJeDg&index=2&feature=plcp

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Sunday Podcast #1 – Blair Witch Project Style

My darling husband just informed me that, due to the angle of the camera shooting up my nostrils and giving me more turkey neck than a Zacky Farms commercial,  I look like I’m making home videos “Blair Witch Project”.

I don’t care.

In fact, I still don’t know where to put the period – inside a quote? Outside a quote? All I know is that, at 42, I’m happy to get a period every month.

This is all I have to say today.

Until tomorrow, here is my first video of 2 this week.