Tuesday, July 17, 2012

Update on the Update

 This was written in April.  I considered re-writing it to a more timely post (where we are now,) but I figured between this and the post before it, you get a pretty good idea of where we all are right now.  Summer vacation has changed things up a bit.  And while, life in general seems to be calmer, I suspect we won't know if any of the things we're doing to help our girls is working until a few weeks after school starts.  If there are helping, I suspect there will be a new set of issues to keep us on our toes.  The silver lining, I guess, is that you, lucky reader, have tons of blog fodder just waiting to be written, so you can read it.  So, um, yeah.   

Short story long, we had Little tested.  She has some speech issues, most of which are something that would normally be addressed until later.  (IOW, she has be older to be considered "delayed" in those areas.)  But the big thing they found was that Little is a single processor.  (Means she can't really multi-task.  Doesn't mean she won't be able to, but right now she really needs to be able to focus on one thing at a time.)  She was also diagnosed with sensory defensiveness disorder.  This isn't really news to us.  We've said all along she has some sensory thing.  It's why she wants a dozen blankets on her at night, even when it's 105 outside.  It's why she used to completely lose her shit over wearing a seat-belt.  It's why she isn't a fan of cold things; even ice cream.  And why she feels pants and shoes, and most especially socks should always be optional, if required at all ever.  The combination of her sensory defensiveness & being a single processor is a large part of why she seems to be struggling at school.  She is easily distracted.  If anything at all commands her attention, then everything else is ignored.  There are some other issues; things that she can do, but isn't doing correctly.  She has acquired incredible coping mechanisms; and manages to use other muscle groups when the ones normally used aren't up to the task.  So, she is having to learn how to hold her pencil in a different way.  A part of her sensory defensiveness is that her sense of touch is messed up.  Some of her speech issues are because she doesn't feel her tongue the way most of us do.  So she can't make the 'R' sound because she doesn't feel if her tongue is in the right place.  The sense of touch thing also works the opposite way; she may not think something hurts the way you and I might.  BUT, if something does get her attention; say a hangnail, she becomes almost obsessive over it.  That's the single processing thing at work.  If it's irritating her, she can't just ignore it like you or I.  Additionally, she has trouble "resetting" herself.  When you get ready to do something different, your brain switches over to a new mode to accommodate the new activity.  This is especially true is you are going from something physical to something more mundane, or visa versa.  Little seems to have issues with self-regulation.  She needs to be "reset."  How a child "resets" or "organizes" themselves for a new activity has a lot to do w/the way in which your child learns best.  Different types of learners would include; visual, audio, etc...  Little is dependent on her proprioceptive system for learning.  She needs her muscles to "grease the wheels," so to speak, in order for her to retain and repeat things she's learned.  A classroom setting, isn't the best place for kids like her.  She's the type of kid, who you could shout out a list of items to while she's running & she can repeat them back to you.  Give her the same list while she's sitting on the floor or at a desk & not so much.   How does one fix this?  I don't know if you really fix it, so much as you try to find acceptable ways to help her reset/organize in a classroom setting.  We have been working with a sensory diet; lots of gum chewing. And have been utilizing "brushing."  I do think they both are helping, but they aren't completely resolving her issues.  We're at a place now, where she is "holding it together at school," but when she gets home, she completely loses her shit.  This part has been hard.  For several months, Little has attended school w/the early &  late birds; thus having a 4 hour day, instead of a 3 hour one.  At home, we've been working our butts off to help her; repetition, games, songs, etc... And she seems to be caught up now.  Her teacher suggested that after Spring Break, she should go back to a 3 hour day.  The problem is, she's not having issues at school, but she is having them at home.  I suspect after a month or so, of these 3 hour days, she will start to show signs of her problems again.  The mental part of this, is exhausting for her.  She wants so badly to "be & do good," she focuses all of her energy on it while at school.  (This is no small deal considering the kids in her class. That's a blog post in itself.)  When she gets home, she's shot.  She still has homework to do, so at some point, she acts out because she's overwhelmed & exhausted.  Yeah, it's been a bit rough.

Saturday, July 14, 2012

Back in the Saddle

So I've been MIA for about a month here.  I actually wrote most of post about the stuff going on w/Little that I'm going to post here after this, but I wanted to address why I haven't posted.  At the end of the school year, Little's teacher & I got into it.  She felt that a question I asked her (via email,) was implying that I didn't approve of her way of teaching & choices in the classroom.  While, I don't think it was a big secret that I was disappointed about several things that were not done in Little's classroom, I did not ever complain to anyone outside of the classroom itself.  I had heard through the school grapevine, that Little's teacher & another one, had several complaints to the principal this year.  I suspect, she thought I was leading the witch hunt.  But, whatever, she sent me a severely snotty email, when I was asking if she she needed additional support on a subject.  Since I had just talked Little off the meltdown ledge for the second time that afternoon, her timing sucked.  I was freaking out about my kid being ready for next year and getting what she needed from the school.  I had offered to help, but instead saying, "no thank you," I was greeted w/accusations.  Her teacher made it into something about herself, when it always has been about my kid.

There was a meeting w/the the principal that ensued, and I'm sure I've somehow been labeled as "one of those moms," but eff them, I'm trying to make sure my kid is getting what she needs to be successful, and as I was seeing it, they were not doing that.  I was asked to step down as a room parent, (yes seriously,) and while I did write apology to the teacher explaining my state of mine at the time of my response, she never actually spoke or acknowledged me again.  (High school, much?)  I suspect that she was told not to by the administration.  But I'd be lying if I didn't admit it pissed me off that I worked my ass off for her all year and didn't even get a mention in the EOY thank you for help email. (After that, I decided that she could kiss my arce.  In my book, that was a total bitch maneuver.)

So the last couple of weeks were a bit more stressful than usual. (Ya think?)  And one day, last week of school I noticed that Big has no eyelashes.  My mom pointed out later that day that she has bald spots in her eyebrows.  At first, I thought they'd fallen out on their own.  I made the mistake of asking Dr. Google about that one.  After I got down w/my panic attack, I asked her if she's pulled them out herself or if they'd fallen out.  Turns out she'd done it.  It's called Trichotillomania and while some people who do it, do it absentmindedly, she goes into the bathroom and has been quite purposeful about it.  It's a compulsion, like nail biting or cutting.  And I'm terrified for her.  There have been a few recent episode of related to self-esteem issues that popped up at this time as well.  My guess is that she's picked up on the vibe of all the crap that was going down w/me and Little at the EOY & her anxiety came out this way.  I've talked w/her about it a few times, I don't want her to  know how scared I am for her.  When we've talked about it, I usually ask her a question about  it.  We'll talk about that part of it; like if you continue to do it, as some point they won't grow back.  And leave it at that.  I've asked her to come tell me when she feels like she needs to do it, and that I'll help her to try and find another way to address it.  And she's seeing a therapist now too.  Things seem to be going well on that front.  I suspect, she likes the fact that she she has something special that needs attention as well. I also think we won't really know how well things are going with her until school starts again. On Mondays, mom's carpool consists of taking Big to her appointment, then taking Little to her Occupational (OT) & Speech Therapy, (ST).  Then going back to get Big and driving back to get Little.  Yeah, it's a little hectic.
In all cases, neither of my kids is "bad enough" to qualify for help from the state.  So we are doing this all though private therapy groups.  As time moves on more and more, these groups won't deal directly w/the insurance companies.  We do have good insurance, 80-90% of this should be covered, but we have to pay upfront & submit the bills to be reimbursed.  (Good luck w/that.)  First round was kicked back bc they thought we had additional coverage from another company.  That has never been the case, so I can't imagine why they would think that.  That being said, we are outputting an additional $4K a month in doctors bills.  Yeah.  I try to keep a cushion in our bank account, but we actually almost bounced a couple payments this month.  So money is suddenly tight.
I realize that in the scope of things that couple be wrong w/my kids and our ability to deal deal with them, we are very lucky.  However, it the midst of all of this, it can be hard to be grateful.  I'm trying.  Someone needs to let my kids know that there is only one crisis allow at a time. I've been feeling very overwhelmed with all of this.  In my head, it was somehow less real if I didn't put it into words.  Last week, I was updating Big's therapist about some things via email & realized how cathartic it is for me to write it down.  As overwhelming, as it is to talk about it, it's  worse if I don't.  So now you're back up to speed more of less.  And hopefully, I'll be writing much more again.  I've missed you interwebs.  ;-)