Tuesday, November 30, 2010

Nothing Doing

Silent symptoms scream loudly don't they?!!!! It is easier to notice things aren't quite right when kids are throwing fits and fighting. When they're quietly struggling they don't get attention as quickly because it is harder to notice. OCD can be like that sometimes...it masks as a mumble, an erase, a delay but it shows itself as a re-read passage that took hours to complete, an anxiety that stops fun activities paralyzing the next move without the compulsion to move on - we can stop compulsions sometimes but not the obsessions, a rephrased answer to a question without any firm commitments to opinions or preferences, a small shrug away from sometime normal - ex. picking up a nail on the floor was a big deal because we don't like touching sharp objects and were very anxious about it! okay, you and I don't want to get stabbed by a nail but the simple transportation of that nail from floor-to hand-to drawer even if it poked us accidentally on the way wouldn't phase us...silent, sneaky OCD builds unnecessary worry about touching that nail and a strong dislike for "sharp" objects - forget about the knife to cut dinner, the scissors to play or the paper cutter - include the razor in the bathroom a pointy nail - now there's danger - but not really right?!

Maintaining a right-idea about what OCD is and isn't is so important in properly addressing its bully behaviors. My Nora NEVER cleans dishes repeatedly, doesn't spend time locking and unlocking doors before she leaves the house but she did line up her stuffies on her bed (but that was to avoid the reading and essay work she DOES use OCD avoidance behaviors about) And at least at our house, these obsessions have themes but neither they or the compulsions follow a set pattern - unless avoidance is in the mix.

We recently started scaling up a medicine regimin and her reactions have been varied but improving - almost like we're peeling back the layers on the symptoms and will leave the core of her illness underneath, but we shall see!

This week's homework, showering for 20 minutes EVERY DAY - but here's the trickiest part, RECORDING it!!

Sometimes I think there isn't much to say, but maybe that is just as much part of her story! And other days there is SO much to say but for her sake I am trying to leave out the outbursts!

More soon!

Here's an article about common OCD myths...it helps clear up some of our common ideas about OCD - you know, from movies and our cultural notions!

Tuesday, October 19, 2010

"the OCD fit"

I have been racking my brain everytime I'm not around Nora to determine what her "OCD FIT" words are...now, I've got it down. Its the same every time - which is good because sometimes OCD is hard to keep up with...here goes:

M: Nora, how much homework do you have left?
N: Swear to god, swear to god, I'm going to hit you now (ad lib) (followed by a pencil throw, door slam, pinch or other physical sign of frustration) SWEAR TO GOD (said much louder this time)
M: standing still...watching...waiting...
N: mom, i'm sorry for throwing a fit (back to self)

that's classic, every time i hear "swear to god" i KNOW...i just don't know what to DO!!!
then, this morning it was so subtle (ocd's voice that is)...a sister told a story about something and Nora calmly explained how that would take 5 days instead of 3 or something so simple like that...Ken said, oh I've gottcha nora (or something similar) and I quickly shook my head and Ken said as I responded to her I realized what was happening...if you're involved with an Accuracy OCD person you know too...she had to "correct" her sister's statement in something very minor because OCD's accuracy demand requires not just accuracy in Nora's statements but what it filter's into her brain (hearing a story too).

Now, a non-OCD person would say their kids correct each other too and that IS true, but for us, it is another sign how nothing passes through the filter without need for attention...every statement must be accurate...every answer on homework can't be answered without OCD questioning if the answer is "really right" - which is how it can get overwhelming and then refer to the above OCD fit above!!!


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Thursday, October 14, 2010

Small signs of OCDs presence

My OCD Kiddo had a morning this morning o yes she did!!! Thankfully I'm getting better at identifying her own personality moodiness and an OCD triggered frustration.

Here's where blogging is getting hard...Nora's OCD is so interwoven with her inner thought patterns it sometimes is only quirky repeated phrases I happen to notice when she's building anxiety about something, a look, how she holds herself - MANNERISMS - a strange grade on a test we studied for, unsubstantiated frustrations and tone followed by a characteristic sweetness - the HOW and WHO she is has a little lightswitch that tells me how much the bully is pestering her and i watch it flicker on and off. She's wrestling with this disease off and on all the time - just like her OCD puzzle tells her - OCD is a part of her - we just want to keep it a small one!

THEN a few minutes later it is an angry outburst, relentless and nearly unstoppable teasing of a sister, or frozen forward movement for a project, or an inability to cope that she doesn't know a spelling word she gets so worked up she can't even continue to study and she throws a pencil across the room...THEN she realizes her bully got the best of her and she makes ammends and moves about her day until the bully starts another round loud enough for me to hear it again...

Wednesday, September 22, 2010

Why would you medicate and NOT get therapy?!

I know we can be medication phobic these days. no one wants to "label" their child or treat them too quickly for diseases they may or may not have but are we seriously THAT scared of seeking therapy that we'd medicate without actually trying to fix the OCD problem??

"WHAT ARE YOU TALKING ABOUT?" you ask me. I just read a parent OCD kids group on facebook posting or five where people are giving advice about how to cope with OCD and discussing a child's troubles by saying that ther anxiety brought about from therapy was worse than the OCD but medication seemed to be working so they were NOT seeking therapy for their children. HELLO, BULLY, COME ON OVER TO PLAY AT OUR HOUSE!!!! that's what that says to me!!!

OF COURSE behaviors are worse to start, you're disturbing a bully's free reign over your child's brain..and bullies don't like to be told NO so of COURSE anxieties are worse for a while. As my daughter's therapist says to me when I feel overwhelmed by Nora's symptoms. The help for one anxiety generalizes the help for them all...it lowers her overall anxiety by fighting the battle. If we medicate - and one day we may - it will be at low enough dose where she still has to learn strategies and fight the disease. Reducing anxiety is IMPORTANT, having a life you can THRIVE in is CRITICAL. Medicating away a problem that needs to be taught its boundaries doesn't actually help fix the problem...the medication only helps ease symptoms but it doesn't fight the problem or teach strategies to relearn what isn't actually worry-worthy.

Oh parents, this one isn't easy. I'm so sorry. I wish it were. How I wish OCD wasn't a lifelong disease, but it is. Fill your child's armory with all the weapons he or she needs to squash this bully while enhancing his/her well being not just while the medication works. Arm yourself with the PROPER do's and don'ts of fighting this bully. Don't make them up...chances are what you think is helping (ex. making an issue seem like "no big deal") is feeding OCD's greedy nature. My best help for OCD is frequently the opposite of how I would cope myself.
Nora: "mom, i talked to my teacher today and i thought i was talking too loud but i don't really think i was, is that okay?"

Me before: "oh honey, you probably weren't loud or she would have said something, its okay, no big deal."

OCD: "ooh, you were too loud you should worry about how loud you're being...haha, you better keep asking! see, don't you feel better your mom said it was okay"

ME NOW: "definitely sounds too loud."

NORA's THINKING: "no, i wasn't too loud, that was OCD"

I can repeat examples like that over and over again let alone exposure therapies that have made her force herself back into habits that were second nature before (and we still have super far to go!)...I guess my stress is that we're responsible for teaching our kids how to be great adults and teaching them to ignore professional help because we're not comfortable with the immediate results and don't like "therapy" is SELFISH and a disservice...and I'm quite sure adults with the disease would agree! And who needs the guilt from feeding their kiddos OCD bully because they're doing the wrong thing since no one was there to tell them differently.


Thursday, September 2, 2010

Chilling out

OCD seems to be chilling out this week. Yay! Nora has therapy in the afternoon tomorrow and I'm so chill about it compared to last week. I think her tough exposure exercise has done wonders like her dr. said - it has generalized to help control other symptoms too - my non professional opinion for sure!

The school meeting went awesome because her teacher is awesome - she has a great balance of keeping nora in step with the class, being private and encouraging her right out of a new little habit or two! I was pretty nervous in there, ken said i touched ny face a bunch - annoying nervous habit of mine. its got to be hard on everyone there's no good manual on this...

Nora's school issue this week has to do with someone telling her that her jokes aren't funny and she's lame, just what you'd expect from a 5th grader so we'll work through it!

Sunday, August 29, 2010

Ready or not week, here we come!

Momma tiff put it out there, put it all out there!!!I don't know if Saturday is what Nora needed, but Saturday was what I needed, for sure! Nora didn't want to talk - or deal (she was a-okay, you know)- but her therapist had her NUMMMMBBBBEERRRRRR!!! I had tipped Nora's therapist off that last week was a rough one...she gave me the option of going in with her, and then, she let me stay. And I told on Nora. Oh, yes I did...We're not EVEN avoiding the awkward stuff - OR the SUPER bad attitude. And I tried not to leave much out as far as categories of things we're cycling through because I wanted her Dr. to grasp the scope of the issue during a week like last...And Nora yawned and yawned and fiddled and played with stuff and looked the other way and pretty much, tried to act like she was a-okay (and then she'd admit maybe not).

So, Nora has homework this week - an exposure she'll have to conduct every day, away from home and have some honor system with. If she can be accountable next week about this, it will be HUGE progress! She'll be reclaiming a huge freedom back (she thinks she isn't avoiding this but oh, she is!!!) She seems to be able to grab a door handle or put her hand on her chest waaaay too easily that she isn't reteaching her brain as much as this will certainly do.

Can we all hide in a bunker and order in Chinese every day so we can cope around the not-so-pleasant side effects of battling the bully??@@@!!!! I think we'd all like to sometimes and I KNOW sometimes Nora would too!

Friday, August 27, 2010

just feelings a bit ovewhelmed

Here's a mom stress moment...notice it is super late at night and I'm awake, which I probably shouldn't be! I started making a list of what to discuss with Nora's therapist tomorrow and the list is sooo long, so that makes me wonder what priorities are, or how I can tell what matters?
- handwashing & sanitizing
- bad thoughts
- repetitive praying and/or saying amen
- reassuring herself
- missing me when i'm gone - worried about something happening
- faucets, some door knobs
- ANGER over the most minor things, and can be physical - especially if she's tired so off to bed she goes
- bathing/tooth brushing
- overwhelmed feelings
- anxious school thoughts (there's more here but she's not talking)
- restrooms
- clothing and body
- akward scenarios

we're so new with therapy I feel like we need her therapist to move in! If i'm not reassuring her, she reassures herself, if it isn't that, it is something else or she's relentlessly teasing someone or freaking out that they're in her space or pestering her, it feels like an exhausting battle - which she says she's tired all the time and I think I get what she means...darn bully!!!! Oh, and she's a 10 year old girl so some of this might just be normal pre-teen hormone drama...lucky, lucky us! - probably why my mom thinks I need to go to a support group, then I can talk this out with them instead of trying to figure everything out myself!
I do have a coffee with an aquaintance who has OCD - we don't know each other very well yet but I look forward to seeing her and she offered to chat. AND one of my girlfriends has a son with OCD i think - perhaps she'll be open to getting together too - this is tough and therapy is for Nora not for us!

Thursday, August 26, 2010

Really, NO parent OCD group around town?! hmmm, that might have to change!

Hi! Does anyone know of an online or in-person OCD parent or parent&kid group? I'd love to start compiling a list as a resource...I'm in KC but I don't care WHERE you are! Let's get the word out there!

Tuesday, August 24, 2010

The only thing i've noticed so far.....SANITIZER!!!!

ummm, here's a quote from nora's teacher, made me say UT OH - big time UT OH!
Hand sanitizerImage via Wikipedia

"They only thing I have noticed Nora doing today was wanting to use hand sanitizer alot. She's a great young lady and doesn't disturb anyone when she gets up to do it. I would be curious if this is something you would like me to ask her not to do, OR is it okay that she's doing it." from Nora's new 5th grade teacher...(we haven't had a school meeting yet, they thought observing her for a couple weeks would be better, arrggghhh this is why it isn't better!!!)

EEEEK!!! hand sanitizer huh? not disturb anyone? of course not! she wants a free pass to move about the room, if she thought she could keep a bottle on her desk she'd probably dispense of it within a day - and definitely within a week...you should see how fast our downstairs bathroom goes through hand soap at the house! this is like the seatbelt sign on a plane, OCD, you are now free to take over classtime.

So tonight, before bed, we were talking about school and I discovered she's sanitizing a BUNCH! I'm not even sure her teacher still knows it - because in order to stop it you have to notice it!!! oh, and she's washing hands multiple times, maybe in a row, if not, she's washing for particular scenarios...I again, went over the hand washing rules - she knows them - except...following them is a different story isn't it!

THEN....she told me she had a minor incident on the playground which afforded her a trip to the nurse's office...NOOOOOOOOO not the nurses office!!! and it was sneaky - any other kid would gladly have EARNED that trip to see the school nurse for this incident but NOT NORA!!!! - she involved an unsuspecting teacher in this case...i think an ID band might be in order, if this child asks for a trip to a nurses office, please look for gaping wounds or a SUPER UBER obvious reason for her to be there. if the reason appears to be in question, IN ANY WAY, please send her to her classroom for further evaluation - if her story sounds plausible, ask for evidence, if you don't know her well enough to ask for evidence and evidence isn't obvious, please find her normal teacher and allow her to make this decision instead. The nurse is like winning the ultimate OCD prize - not sure if OCD knows it yet but her "incident" was in OCDs latest bag of tricks for sure! 

this was the first nurse trip for the year but if i know anything so far this won't be the last for sure!!! funny thing is, her therapist and i discussed how NOT being sent there was important and then her teacher and i discussed it at parent night the NIGHT before!!!!

we have another therapy appt. this weekend - i need to journal this stuff so my scatterbrained mind doesn't forget because Nora's sure not going to reveal this week if she thinks she can help it I bet!!!

this posting doesn't even go into life at home...its like she's obsessing and compulsively teasing, pestering, reacting to her sisters but i don't know if that is a reaction to other troubles or what, this bully is tricky tricky i tell you!

oh, and i was trying to tickle her tonight - hardy har har she didn't say! (at least they'll have something to work on for exposure therapy)

now she's sleeping - as well she should be!!!! new day tomorrow!
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Friday, August 13, 2010

Oh Tricky Little OCD - you'll just obsess about anything won't you?!!

OCD = Obsessing and then Compulsively doing things to relieve the obsession...seems pretty straight forward, right?

Here's the scenario: Girls go to county fair (which we won a blue and red ribbon for a pie contest at, woot woot). Nora loves the animals. Girls return to county fair...Nora gets to see animals again, still loving the animals. Girls have plans to go to Demolition Derby at county fair, Nora looks forward to seeing the animals again. Girls get good seats for Derby, Nora doesn't get to see animals. Nora asks for the time, and when can we go see those animals? Nora starts saying she's bored with derby, and what time is it and when can she see the animals? Nora watches a bit more of the derby and asks yet again, when can she see the animals...Husband gets frusterated - they have great seats and the girls have never been to the derby before, the crashes are awesome and hadn't they seen the animals at least twice so far? Nora, asks for time, and when can she see the animals...(over and over and over) night almost ends, husband and girls walk through to see the animals..come home, husband is spent, Nora is happy.

Husband tells me story when they arrive home, he's frazzled - all she wanted to do was see the animals. Me? I mention, umm honey, it sounds like she was obsessing about the animals and couldn't get it out of her head. She told ME all about the cars she saw and that it seemed like she had a good time. Husband has a OH, DUH, OF COURSE!!!! she was plainly obsessing about the animals, couldn't get it off her mind, had a complete pattern to scenario...Obsessive - Compulsive pattern and it was easier seen hindsight than in the moment - but then seeing the animals wouldn't have actually made things better now would it?

Wednesday, July 28, 2010

bestie friend sleepover, movie, mocha, fishing, movie, meltdown, home!

We're SO lucky Nora's best friend is zany. AND she pulls Nora along to do things with her AND she ignores her and laughs at her. Intertwined are undertones - almost constant undertones, "no, that didn't happen Nora, you don't have to do that Nora, you're okay Nora" over and over...as well as bathroom obsessions...they're an undercurrent of her whole day.

We caught our first fish today - 5 girls by ourselves!!! Nora caught hers (2 babies) with a little net and not with the pole...as everyone else had and we were cheering her on she started to feel the pressure..."i'm no good, i can't do it, i'm just stupid..." - time to go and thought process was broken.

Off to the movies and a LATE lunch...in the parking lot back to the car she fretted and fussed at me for not taking them out to eat...i'm a liar, i promised, as always i break promises..holding her hands again - we'd been out of the house for hours. i'm working on being calmer when she's stressed to not allow rudeness but understanding too - tricky tricky!!!

she's back playing with the girls after lunch, no fighting today...busy is good i think...no headway with schools today, i guess there's always tomorrow to work on that!

Friday, July 23, 2010

all in a summer

So today we got our official "confirmation" - Nora has OCD...big, bad, greedy bully, OCD. Nora's 10, typical suburban kiddo, scouts, soccer, swimming - well hold the phone - that's kind of how this all got started...no more swimming. Around our house, we rearrange everything for summer. My husband doesn't sleep, I work crazy hours, we do everything we can so our gaggle of girls (we have 4, Nora's oldest) get to sleep in, go to the library, the movies, hang out with friends and swim!!!

Here's where OCD looks like normal...and looks like normal..and looks like normal until you think your kiddo has a severe drug reaction because WHY IN THE WORLD is she acting this way? I mean she's a different kid all together, NO she didn't act like this 2 weeks ago, what's up? Its like she has OCD...but she doesn't! Ohhhh, but she does.

Strange things that happened...some over time, some ALL at once:
1. Nora starts to cry and freak out and panic when Ken (her dad) and I (oh hi, I'm Tiffany by the way) would go on our evening walk - a walk we try to take as often as possible for 15-20 minutes and have taken well, for years....we called this a phase
2. Nora calls us...for most girls at 10, maybe they call on the phone, Nora doesn't...well didn't...she needs to check on us...and often! - okay, its summer and we have a droid the girls play with sooo again...we called this a phase
3. Nora goes to the pool for the first time for the summer, thinks it feels like the water is pee running down her leg (you all know the feeling!!!) - I tell her no biggie, its just the water - and besides - she'd KNOW if it was pee! This was the last time in 2 months she went to the pool with us and put on a suit and got in the water - she just didn't feel like swimming, you know...ummm, this time we called it all puberty...as a matter of fact, all these strange things just must be hormones! puberty has come!...we called this a level above a phase...

In the meantime…Nora was experiencing stomach aches – and was agitated and rinsing her hands a lot, poor thing is worried she’s sick hormones can be a pain can’t they! We’d taken her to the doctor in early May, we were told it was probably stress…we got a prescription for a generic version of prilosec…it didn’t help, stomach aches were getting WORSE! And by now strange things 1, 2, and 3 were underway…what was going on with our poor kiddo? Must be, that’s it, PUBERTY!!!

Every year I travel to Minnesota for my job…This year, I went in mid-June. Nora’s stomach aches were pretty frequent and she was agitated and of course we were concerned about strange things 1, 2 and 3. I arranged for my girlfriend (who nora’s known since she was pretty much a baby) to watch all 4 girls when I got home because Ken had taken off work while I was gone…treat for him! While gone, Ken mentioned he was concerned about Nora,

I return from my trip and the downstairs wastebasket is full of tissues…Nora’s “wiping” her fingers of almost non-stop, she’s agitated and sooo glad to see me. Friday I go to the office for a few hours (it took longer than I thought, she was super upset, how could I not come home, I always do this, and I lie, I lie!!!) We order Chinese food, ate together, and went to my friend’s to hang out for the night, play cards and then the kids would stay over. Nora’s stomach ache got so bad we left with her. We took her to the doctor in the morning and noticed she was again washing off her hands – as a matter of fact, she seemed to be washing them quite a lot lately – like she was coming up with a reason to wash - hmmm….Nora sees the doctor, gets a new prescription – this time for prevacid, is excited to return to my friend’s because the doctor told her she was not ill, her troubles were functional and not germs…on the way back to the house I notice Nora uses her arm to open the door…and gets stuck up in her room because she can’t get the knob to turn…okay, this is NOT normal!

My friend takes the girls to a dance competition and by 6:30 at night calls me to say that something definitely is NOT typical with nora and she thought I meant she was worried about germs but this is NOT what she thought!!! Nora had been to the restroom at least 30 times because she touched her shorts, touched the bench, touched her hair, touched her shirt, touched her face…and a bunch of other reasons to boot! I call the doctor, she said to reassure nora that she did NOT have germs and she’d be fine…this is the first time the actual letters OCD entered my brain. I was in a panic. SOMETHING was just NOT right here. Something was VERY wrong. Nora was changing from her silly self right in front of me and FAST!!! Gulp…what to do now!!!

I hopped online – started researching drug interactions and OCD – then side effects of prilosec and prevacid…anxiety was on the list, maybe this is it!!!! We quickly got an appointment at a children’s gastro-intestinal doctor. Umm, an appointment can almost not go worse!!! Nora wouldn’t talk to him, denied everything I said (she wasn’t about to share anything personal with that guy!), held her hands in her new folded manner (my eyes draw to her hands, she holds them so purposefully closed – and she doesn’t shake anyone’s hand, NO THANK YOU!), and wished herself outta there.

That meeting sealed it. This was NOT a medical illness we were dealing with, they weren’t even asking about the hand washing, the agitation, the difficulty getting her to bathe, the temper flares, the hand washing, the aversion to her own self…LET ALONE ask me anything about the “confessional” conversations we now had every night “alone, in private” to discuss awkward incidents between herself or others from her past (conversations that usually ended with me telling her it was no biggie and no worry was needed, later I find out that was only making things worse). I had already done some homework and found OCD specialist doctors in our area but wanted to be sure the medical issue wasn’t playing a role in our symptoms so I had put off scheduling an actual appointment with them. Monday morning, we had an appointment on the calendar, my Nora was changing in front of our eyes and school was starting in mere weeks. –this OCD waited until summer until it took over my Nora (well, maybe not, but summer surely showcased its nasty handiwork!)

While waiting for the appointment, we had a great day, Nora went swimming!!! She got in the water to help with her baby sister’s first time at the pool. She spent most of the time traveling back and forth to the bathroom to rinse her hands but she admitted she really does love the water! And sort of that she missed swimming, I was SO excited! No more trips back until we went to a new pool and were meeting up with friends and the excitement of all the activity overcame whatever was NOT allowing her to go. Again, she spent loads of time in the bathroom and I ended up giving her sanitizer so she didn’t have to miss out on so much fun time…I think she maybe got used to the pool and didn’t sanitize so much but I’m not super sure.

Now that we’ve met our doc – my marching orders mean I turn into the big bad momma bear. Helping feels like the opposite these days. I find myself saying things like, “sounds so rude, she should be embarrassed” or “touching your hair is disgusting now isn’t it” or many, many other things that I can’t even repeat because if it is awkward or mildly inappropriate, Nora’s brain likes to settle right there recalling all the funky AWKWARD shouting moments in her life. And in order to stop a bully in its tracks, you have to call its bluff and NOT give it what it wants. It wants assurance the things there’s no need to worry about have no need to worry about them…I can’t give this bully any assurance about anything because then maybe it’ll stop trying to make her worry. Why not just tell her these things are “no biggie?” – Because that’s what it wants and then it will feed her brain with more and more and more of these anxieties…helping is hard work!!! She seems to be stuck on these thoughts, working through them obsessing over them compulsively telling me about them over and over and over again…what to do!!!!

More later…this has been quite enough…I enrolled her in school today, mentioned her diagnosis thinking we could get her safety net ready…ummm, apparently not…here’s where I need to dig in and find support and how to help them help her!...that’s saving for another day!