Wednesday, August 25, 2010

I could get used to this healing stuff

I continue to hear from more and more people who are seeing some benefits of niacin in their kids who have a history of trauma. I'm sure one day, someone will finally get around to doing an actual study (one that many people can argue over and refute). In the meantime, there are plenty of us who will continue to supplement some of our kids because ... it helps.

Niacin has not been a magic pill for my daughter. Even with it, we have had some terrible days. But overall? It has brought MASSIVE benefits. The big picture is that she is not shooting to the extremes all the time. I would say it cut back 60-75% of the really harsh, immediate reactions to the tiniest of requests and questions.

Which means that we have also had to dig in and start to really do some hard work at helping her to move forward, now that she can. It's a big, crazy juggle. Some days she can talk. Other days, we have to keep things simple. I just do my best to read where she is. Nudge when I think I can nudge. Back off when I'm being a trigger. It's tricky. I'm not particularly fond of this stage.

Yet, we have seen a very slow progress since the niacin, that we have never seen before. We were able to take some actual therapeutic interventions to a new level.

Case in point ...

I have recently talked Rocky and Mar both through some basic Cognitive Behavioral Therapy steps (could NOT do something like this a year ago - would be a waste of time for Mar). When they are regulated, we talk about the big feelings they have and the lie that the hurt part tells them in those moments. We write them down. Talk about how those big feelings are the "red flag" when we need to tell ourselves, "STOP!" We then list all of the typical behavior things they do when they have that big feeling.

The front of one card may look like this:

I feel disgusting. The hurt part tells me that I am gross, and that is why my birth family let me be adopted and people kept hurting me and sending me away.

When I feel disgusting, I usually

*do stuff to annoy people, so they will also think I'm bad
*dress disgusting
*smell disgusting
*do things to gross people out

Then, we flip that card over and state the truth. I ask them to come up with some OTHER things they could do instead of the regular behaviors. We talk about how it's easy to do the old stuff. Anybody can do that. But strong kids try new behaviors. The other side of the card might say:

I am beautiful, pure, clean and lovely. I will

*use my words to make people feel great
*dress beautifully
*smell extra lovely
*act in a way that makes people want to be near me


This one was a biggie, and painful for her. We went through closets and drawers to make some changes (and trash things that needed to go). We discussed how on the really tough days, she could ask her big sister to help her get ready - how she should not just dress okay, but dress EXTRA special on the hardest days, smell EXTRA special on the hardest days. Also, I was clear that she would still feel disgusting. The feeling does not go away just by dressing, smelling and behaving the truth. We talked about what it might be like to feel that feeling, but make the positive choice anyway.

So, that's where we've been. Fast forward to yesterday. We had one minor incident at the store, so I just kept Mar with me and my youngest for that short trip (her older siblings got to look at toys). On the way out, she was carrying our 500 lbs of toilet paper we had just purchased. I very clearly told her she could put it in the front passenger's seat. Everyone was trying to pile into the car, and there she stood, crouched over in the middle of the van, blocking the rest of her siblings from getting in. "Um, what am I supposed to .. where do I put it?" She was in the play-dumb mode. I IMMEDIATELY started to churn my brain on what I would do when she refused to let me talk her down and stayed dysregulated til we got home. Once she is there - in it - she never comes out until later. So, I was prepared for the dance.

If you parent kids from the hard places, you know what I'm talking about. There is "slightly dysregulated." There is "kind of a rough day." There is "getting on top of it before it even starts." But then, there is full-on, already THERE. When they are THERE ... you just get comfortable and buckle up for the ride, doing everything in your power to keep it from complete explosion.

"Mar, this is one of those times we have talked about. You are feeling one of those big feelings right now. The hurt part is telling you not to listen to me and not to show me any respect. If you do, it means I'm the grown-up, and I may harm you. It's time to tell the hurt part to STOP. You know you can trust me. You've tested me, and I passed ... for 2.5 years, I have shown you. Normally, you would pretend not to know what you should do. I will probably have someone else tell you or do it for you, and you'll put some love back into them later. OR, you could try really hard to do the strong thing. You could tell yourself the truth, and make the positive choice, EVEN THOUGH YOU STILL FEEL THAT BIG FEELING. Your choice."

Her face did not change. Her hands were actually shaking ... but ... guys, MY DAUGHTER PUT THE TOILET PAPER IN THE PASSENGER'S SEAT!

In 867 days (yes, I counted), she has never, ever, when stuck in the moment, EVER DONE THAT! OMG!!!

She just stood there for a minute. She wasn't sure what to do. No one did. It was a temporary, complete silence. Like a dream. I finally said, "Um," (started to smile), "holy crap!" SHE finally smiled. "Well, why don't you sit in your seat. I guess we get to find out if you can have a big feeling, make a positive choice and NOT die. Of course, if you DO die, what will we do?"

"Have a nice service and play my favorite songs."

"That's right."

Her brothers and sisters broke out in applause, which was really sweet and made her smile bigger. Yeah for them. They knew it was the right thing to do, and they wanted to honor the magnitude of what she had just done.

She did not do one single thing the rest of the day to go back to dysregulation. Have I mentioned that this is during her cycle? The time over the last few months when we have been struggling severely? Oh, and this week is her BIRTHDAY (which she has sabotaged the last two years)! Should I say that part again, just for emphasis?

OH MY HOLY HOOCH, YA'LL!

My daughter was so very far gone when she came to us. The way she did and did not behave frightened me. She had ZERO attachment to any human being. She could shut down easily, and completely disassociate from herself and the world around her ... not for hours, but for days ... weeks. I have spent nights crying and worrying about her future, and all the many people who would cross her path and be affected by her own inner turmoil.

Yet, yesterday ... she put the toilet paper in the passenger's seat.

Be encouraged.



52 comments:

Elizabeth @ My Life, Such as it is... said...

And the angels in Heaven danced as well! Congratulations to Mar for taking the first of many more scary steps in this new process!

Although I must admit, even though I don't have RAD, sometimes dressing nice, looking nice, etc. makes me feel better when I'm having a crappy day. Or wearing a spectacular matching bra & panty set underneath my blah clothes does the same thing too.

Still keeping you and your family in my prayers.

Laynie said...

This is SO huge! I am so happy for Mar and you guys! A quick note about niacin: my doctor said they did a study that niacin works awesome on those high cholesterol numbers. Give it two or three months and you will see the numbers begin to greatly decrease!

Loving the Mommy Life said...

That is huge progress!! Enjoy these moments because you have worked hard for them!!

denie heppner said...

great news...good for mar and good for you, i'm so thrilled for all of you. praying as always for grace for the journey.

Megan said...

Oh Holy Hootch! Thank you God for proper toilet paper placement!

I love that walk us through the ways that you help your children. SO helpful to all of us- even who's kiddos are pre-verbal.

You are just a fountain of loveliness.

Molly said...

YAY! that is fantastic!!!

Kat said...

Great job - all of you! And thanks for posting the details, not just of the moment, but of the path to get there. Love it.

Kathleen

suzanne said...

I usually am just a reader, but what a blessing this story is today! What a joy to get a moment like that when you've worked so hard for so long...just an inspiration on day that's shaping up to be a day where I don't think I will get any moments. Glad I can share the joy of yours to get me through!

J. said...

Go Mar, Go Mama, Go Mar, Go Mama!

Kelly said...

praise the Lord! What an encouragement and testimony! thanks so much for sharing and helping others!

B said...

christine, i have two children - my step-daughter who is 8 1/2 and my bio daughter who is 18 mo. we have no attachment disorders to speak of, but i have been reading you for a while now and everything you write about your precious babes has truly helped me with my two girls.
i was so excited when i read this. i felt like i was flying and she isn't even my babe. you all are amazing and i can't wait to read more posts like this!

Amy said...

thanks for the much needed hope this morning.

guess there was a reason i wound up over here. this post and the one about lisa. i had JUST emailed her (literally seconds ago) to check in on her.

Momma too Many said...

I am crying tears of JOY for Mar(and you!) right now!!! What a proud moment for her, to know that she CAN regulate herself and make right choices and NOT have to listen to her family sing at her funeral! I am looking forward to the days of celebration for my own kids. Thank Mar for me, she gave me hope and joy today. In the midst of my own struggles and tears, Mar, you made a difference for ME, and made me smile!

abs said...

Way to go Mar and Mom (and sibs!)

BT said...

This post brought tears to my eyes. So wonderful. Congatulations to her and to you. And how touching that your other kids broke out into spontaneous applause.

Your description of the niacin is bang on. Not a magic pill but it sure does help even out the extreme reactions.

Michelle said...

I never have teared up over toilet paper before. So very happy for you and your beautiful girl.

a Tonggu Momma said...

I teared up for BOTH of you when I read this. I am so! very! happy for your entire family. It feels good on this side of it, doesn't it? Even if it slips a bit now and again. Because now you know it CAN happen again and it WILL happen again.

Sevan said...

I'm at work so I can't applaud like I wanted to at first...so I teared up instead. This is so so so wonderful!!!

Chapter Two said...

Beautiful!

Lindy said...

Sooooo, just how much niacin in say a 140lb nearly 14 yr old boy?????

Jolene said...

~That is incredible..if I were speaking this and not typing it I'd be whispering right now, because I'd be nearly speechless~

Yesterday was a very rough day for us, both our boys were ~*THERE*~ in their own moments, wrestling with their own big feelings. Two at once was exhausting, it was a laugh, cry or scream day for me. I did none of those although I truly wanted to.

Niacin has helped us so much and now I'm checking into Magnesium and Zinc supplements as well. With our boys being 5 and 7 its hard to help them talk about and understand their big feelings. Advice in that area of helping such little men?

~Jolene~

Brandy-new rad mom said...

That is so awesome! I love LOVE your stories of healing! It gives me hope for the future. I admit I am jealous of you because you are seeing the healing. I want to be there too. But (bit BUT) you have been 867 days in and I am a mere 4 months and 25 days. (you are not the only counter LOL) So this tells me I have something really awesome to look forward too!

Keep healing. You inspire many to keep trying!

Corey said...

We are still working the niacin, and I believe it is giving us something to work with, which is better than we had before (a whole lot of NOTHING.)

Mary at His feet said...

I know how HUGE this is!!!!
<3
Congratulations to all!!!!!!!!!!

Christine said...

Lindy,

Typically, everyone starts with a 500 mg capsule. I have been recommending no-flush, although some kids don't mind the flush sensation and red face (some have tingling or itching sensations - some don't); some swear that the regular, plain flushing niacin works better ... but we've had plenty of results with the no-flush (time released).

We started at 500 mg. Waited a good five days. Went to 1000 mg. Another 5-7 days and up to 1500 mg. That is where we realized we were DEFINITELY seeing results ("Hey, I haven't wanted to jump off the roof in about a week ... hmmmm ... something's different). Some kids go higher. Some have quick results on the lowest dose in a few days. All depends on your kid and their chemistry.

You can go to the top of my blog in the search box and put in "niacin" to find what I've written on it. Doctors who actually do niacin therapy with patients say you go as high as they need, and as can be tolerated (for some, even no-flush may start a flush that they don't care for, etc., etc.). Again, read and learn!

deb ... p.s. bohemian said...

i'm just smiling and all happy to all ya'll - this is HUGE!

brenkachicka said...

WOWZA WOWZA WOWZA!!!
That is HUGE! YAY!

The Lundys said...

wow, awesome! so glad you shared and i finally listened. :)

L said...

You ROCK, Mar!! (And you too, Christine--and sibs too for the applause!) I can learn a few things from Mar... As I shared with you, I have a trauma background also and I have also struggled with dissociating, self esteem etc. I like the CBT stuff--to dress and smell extra nice on the days you don't FEEL those feelings especially. Wish I could give Mar a safe hug but instead, I'll just say congrats!! Lori

ManyBlessings said...

YOU GO MAR!!!!

jendoop said...

What a beautiful girl who made awesome progress today!

Christine said...

Jolene, you can start with "giving them words."

"I am mad!"

Have them repeat after you in the moment. You slowly (EVERY SLOWLY) start to change "mad" to "stressed" or "uncomfortable" and eventually (SLOWLY!) use something like "afraid."

After it is over, you can use toys to act out what happened and choose other options, but pretend the toys are other children going through the same thing (NOT them being represented - that is too threatening).

Etc., etc., etc.

Jennifer said...

How awesome! It brings tears to my eyes when I read these encouraging posts because I know there is hope for my three. I will keep pressing on!

Leah said...

Awesome Job Mar!!!

Kerrie said...

That is AMAZING! And impeccably timed, as we have some hard round-table discussions about Princess and some frightening developments. Thank you for writing. Always.

Sean's Ladies said...

YES!!!!!! That is so freaking awesome!!!

Now, tell me more about this niacin. I've looked into it a bit and seen the videos, etc. but hesitant to give it to my kids.

Does she have side effects?

Hannah_Rae said...

Wow wow wow wow wow!

Copy paste speech.

Insert speech into brain.

Use speech tomorrow!

WOW! YAY MAR!!!!! You are getting so strong!

Blessings!

Hannah

Happymom4 aka Hope Anne said...

AWESOME!!!!

And we have seen amazing results with our little RADling with "Go Ruby Go". Dunno if dried powerdered fruit has NIACIN in it or not?! But her behaviors deterioriate FAST if she's off it for about 3 days . . . Whatever it is, it WORKS, and I'm keeping her on it.

chelle.white said...

This is BIG! But I guess you know that. Well done, Mar for the way you handled your big feelings!

I'm so proud of you.

Shannon- said...

I'm in tears reading this! YAAYYA CHeeers!

Thank you for doing what you do- and spelling it all out for the rest of us to learn and be inspired by. THANK YOU!

Diana said...

I'm dancing on the ceiling right along with you, girlfriend! I love these amazing moments - moments that carry us through and keep us going - moments that remind us that all this insanity really is worth it!

I love those cards. I've got a couple of kids who really might benefit from something like this.

Alicia G said...

Awesome!! That makes me feel like jumping up and down with a big silly grin on my face - and I would, but I'm at work. I thought I'd pass along another blog that is a picture of how the beautiful is always there, just sometimes hidden. Blessings to you! http://www.incourage.me/2010/08/keep-growing.html

Heather said...

I'm so glad I read this post - it got me successfully through our own about-to-go-over-the-top moments yesterday. Sometimes we manage to get past them, sometimes we just have to hang on for the ride, but it was great to add something new to our bag of tricks!

Lynn said...

I shared with my brother, who is a family physician, that we were using niacin with my six year old. He quickly let me know that there should be few problems with standard supplements. However, the liver needs to be monitored if you're using the time release (or no flush) version. Liver damage is possible.

I looked it up and figured I'd link to this in case anyone wanted "official" information:
http://www.umm.edu/altmed/articles/vitamin-b3-000335.htm
See the paragraph titled "high cholesterol".

Christine said...

Lynn, much of that research is overstated - or presented vague enough to confuse people.

Basically, look at each link and find the basis of each piece of research ... and who paid for it.

Time after time after time it comes back to who is funding it. What is actually a "high dose," etc., etc., etc.? Scare tactics used by the companies who are making prescription medications to do the exact same things. They don't want you to use vitamins. They can't make any money off of it.

I realize that puts a lot of research into you hands. Check out all of the info on www.doctoryourself.com

Find out how many deaths there are each year, attributed to vitamins and supplements. Then find out how many deaths there are each year, attributed to RX meds. It's shocking.

Lynn said...

I did a lot of research myself. But I do trust my brother! He's an amazing doctor who pays attention to a lot of the details. That's why he was very specific when he told me that it is possible to have liver damage with the no-flush variety. Not that it was a horrible thing to do. Or that I should take my kid off of it. Only that it's possible for liver damage with that particular kind of niacin.

Maia said...

That's so awesome! Mar, you are so amazing and you inspire me every day. I tell my younger sibs who have hurt parts of them stories about you and how cool you are. Happy Birthday!
-Maia

lehall said...

I am so proud of both of you. And I don't even know you. Thank God for your good work in her life. And God's good work in both your lives.
So far I have one bio kid. He's 2.5 and actually has pretty good self regulation skills. I would not venture to even come close to comparing him or his behaviors to your kids. But what I read from you helps me help him in his "toddler moments" and I thank you.

Barb G said...

With joyful tears in my eyes, and a full heart, I celebrate this with you. I too have seen our son struggle and defeat his monsters, and the one you shared is HUGE!!! Thanks for sharing.

Jen said...

Christine,

I am SO happy for you! I totally "get" what huge milestones these things are! I don't know if any of my children ever had as extreme symptoms and behaviors as Mar (but they were pretty unattached!). . . but it is so hard and SO joyous when we see God healing their hearts!

Strangely enough, my son came home from his science class today with this really interesting video about pellagra (a disease from malnutrition that was prevalent among poor southerners during the early part of the last century). . . it included people acting insane AND, eventually was found to be linked to a lack of vitamin B1 and B3 (one of those is niacin!).

anyhoo, here's the link to watch if you are interested.

http://sepuplhs.org/movies/odys08_vid_pellagra_350.mov

Duso Brown said...

Christine,
I usually just lurk, but I wanted to say congrats to Mar and to you! That is huge!
Also, I have a question about the niacin you are using. Is it the time-release niacin, or the no flush (which is actually niacinamide or inositol hexanicotinate). Thanks,
Julie

Christine said...

Juso, if you can tolerate the niacin flush, then it is much more effective. But it depends on the individual. You should always start slowly and gradually. The flush effect is different in everyone. Some people love it. Some loathe it! lol