which way is up?

Phoebe is getting ready for the 8th grade.  Mentally, not really, but physically she is.  Each year the same issues arise around this time with behavior, and moods.  For the last 7 years, I have tried to figure out what causes these upsets.  She'll have a few good days, and then a terrible day.  A few good, a few bad.  It's so frustrating.  It's frustrating for her, her teachers, and her mom.  But, what is it really?  As I have said, Phoebe is a socially motivated girl.  She wants nothing more than to be with her friends, or even just watch other kids.  She watches, listens and learns.  All the normal things are, and have been done during school.  She has a behavior plan, and the ABC chart, etc. I applaud those who try their best to help her.  

But, what is it really?  (I say that again.)  Is she behaving the way she is, because she wants more interaction with her peers?  Or does she NOT want any interaction with peers, or other CI, or EI classmates?  Is she only really wanting attention from anyone who will give it to her?  Yes, yes and yes.  This is my conclusion.  (and not a very educated one) We build on to her schedule time for peers, and then take them away when her behaviors don't improve.  I have picked her up 3-4 times in the last few weeks due to behavior.  I'm not talking a little behavior.  I'm talking all out meltdown, throw desks over, rip paper, wreck markers, swear and call people fuckers (sorry), and so on. I can't even explain the amount of guilt that I feel when they call me.  Is it my fault?  No.  Do I blame them for calling?  No.  But still there is guilt.  Every mother has it.  

They cleared the room one day.  Does this help, or make it worse?  WHO knows!?  And, I think it depends.  So, what do you do?  What does the mom do?  What does the teacher do?  What does her team do?  I'm putting this one in their hands, and hoping we can come up with something for the end of the school year.  (again)  I'm taking my prilosec (doubled up), and my prozac, and gearing up for this yearly roller coaster ride.  Let's do it.

gulp.

Pain and medication

This week was an interesting one.  Phoebe slightly complained on Easter that her tooth/mouth hurt.  While I believed her- I also thought it was probably a cavity, and some sensitivity to all the sugar she took in.  She didn't sleep that night, and woke up for the day at 4 am.  I was slightly annoyed, to say the least.  It was not one of my better mommy moments.  Finally, on Tuesday I took her to our favorite dentist, and low and behold...she had a raging abscessed tooth.  OH MY GOD.  I felt awful.  The few times I have known people with abscessed teeth - they have been laid out.  Literally, could hardly get up from where they laid.  Although she is 13, and slightly dramatic (I say that with sarcasm), she is still autistic.   Her pain tolerance is out of this world.  She has had fillings, tooth repairs (a broken front tooth), etc. and never complained.  When she had her tonsils out 7 years ago, immediately after she said, "can I have my bologna sandwich now?"  She never once said she didn't want to eat. (big shocker)  It was only a few years later when her brother had his tonsils out, that I realized she was amazing when it came to pain, and he was like a typical child...in tons of pain, and hard to console.  This autistic child is amazing.  (not that her brother isn't...he's amazing in his way too)

I had to give Phoebe Tylenol to help her sleep during the tooth pain.  While it helped, it started me on a journey to remember all the meds this child has taken.  For my Psychology class, I had to watch a documentary on childhood bi-polar disorder, and the medications for it.  It was eye-opening and scary.  The things we will do to make our kids more "normal".  God forbid they don't fit in that box of "normal" I don't deal with bi-polar, and I don't know what those families dealing with it have to do for their children.  I only deal with PDD-NOS.  Only.  (Ha!)  I do, however, wonder what I am doing to this child of mine.  She has taken medications to make her less hyper, less moody, less impulsive,  more able to focus, less anxious, less sleepy, more sleepy...etc.  At one point a few years ago, I weaned her off many of them to get back to the basics.  I needed to see who she was again.  Throw puberty in there, and growing...who knows what you're really getting?  While I want Phoebe to like herself, and be able to fit in with peers...I also want her to know that she is unique, and special.  She doesn't have to be like everyone else.

So Phoebe...
Not everyone can name every child in the 1st grade on the first day of school.  Not every child can list all the kids in the 4th grade, and then go back and make sure to cross off those that have moved.  Not every child can name the quarterbacks in the NFL, remember addresses, where mom left her keys, give the numbers and names of every basketball player on MSU's team, text my friends and finish my Words with Friends games, finish my sentences when I didn't really even know what I was going to say, and change all the settings on my iMac, and iPhone so that I can't figure out how to change it back.

Embrace your uniqueness in this Autism Awareness month.  I sure do.

Autism Awareness

Yes, it's Autism Awareness month.  You should "Light It Up Blue", for Autism Speaks, and do what you can to help out those who don't know anything about Autism.  I hate to sound cynical, but who doesn't know about autism?  I mean...we've all heard about it, and yes...some of us don't know the details...but we've heard.  I'VE HEARD IT...believe me.  I am so sick of hearing about it...I am blue in the face (no pun intended).  I'm tired of talking about it.  I'm sick of dealing with it.  I'm tired of listening to it.  I'm sick of parenting it.  I think you get my drift.

For those of you thinking about teaching autistic children, or working with autistic children, there is no one perfect definition of what autism is.  Yes, we know the dictionary terminology, but I'm talking about what it means to be autistic.  EVERY child is different.  I can't stress that enough.  Phoebe is proof that "typical" autism theories, and strategies don't always work for her.  I've always said she has Phoebetism.  She is super social, and sometimes inappropriate.  (ok- lots of the time...inappropriate)  She can talk you under the table, and work a computer, and an iPhone like no-one can.  She has co-existing conditions, as some autistic children do.  She has high anxiety, and serious impulsivity issues. Also, she wants constant attention, whether it be negative or positive.  (And, not to mention the OCD, eating voraciously, and temper, temper, temper:)  She can swear at the most inopportune moments and make you feel like the worst parent in the world.  However, she doesn't necessarily understand the meaning of what she's saying, or doing, and sometimes she does.  You assume she does and there lies the problem.  I even assume she can do, say, or act a certain way...and then I am forced to realize this isn't true.  (sometimes the hard way)

As a mother of a child with autism, I have to be on my toes at all times.  There isn't down time when I'm with her.  There are times I prepare for the worst, and she is the best...and then there are times I think she'll be great, and the 2 hour meltdown takes place.

Don't get me wrong, I can handle this autism/PDD-NOS/high functioning thing.  I tell myself I can.

But, you should know when you talk to me...I am always aware of autism.  ALWAYS.

It's April, and I am AWARE of Autism....Now you should be. Go educate yourself, and make a difference.

http://lightitupblue.org/Markslist/home.do