Monday, June 25, 2012

Can I get a diagnosis over here?

I think I need an evaluation.  On any given day, I'm thinking about my kids roughly 19 hours of the day.  I do try to sleep for the other 5 hours.  Sometimes I even log in a solid 6 hours.  If it's been 7, I hope someone will check to make sure I am still alive.

Because I have a great mom who worries about me (a task that I'm quite sure is Chapter One in the Mommy Manual), she lovingly suggested that I take some time away.  I think she said something along the lines of, "I'm worried about you.  You need to take some time for yourself."  Subtle.  To which I think I responded with a look of total confusion and asked her to repeat herself.  Time for myself?  What is this magical thing of which you speak?

Given this amazing opportunity, I jumped at the chance.  Of course, planning such an auspicious event is almost too complicated to make it worth it.  K has started summer school which means that carpools needed to be arranged.  Both girls needed somewhere to go or something to do during the afternoon.  Lord knows I needed to do laundry.  Mapquest got a workout from me, too.  I ran out of time and left the refrigerator practically bare (sorry, Honey).

Planning was done and we set out on our 2 day adventure.  Normal people would leave their work thoughts behind by the time they hit the freeway.  I think I finally started to sort of unwind about 8 hours after we left home and into my first margarita.  

I'd like to tell you that I was able to just not think about my responsibilities for a couple of days.  I knew that all was well at home and that everything was under control and the world was not going to come to a screeching halt without me there to keep it turning.  The truth is, though, that I found it impossible to totally disconnect from my constant thoughts about my family - probably due to the fact that S kept texting me.  In the interest of full disclosure, I not only thought about, but spent a great deal of time talking about, the impending decision about K's 5th grade school year.

I keep thinking about one of the hallmarks for many kids with autism diagnoses - the extraordinary ability to have a huge wealth of knowledge about one particular subject.  Okay, yes, some describe it as a fixation.  What does that mean for me?  If there was an evaluation for parents like me, what would our diagnosis be?  Getawaybic: The phobia of being away from one's children?

There is a cure, though, I think.  One must get away more often...preferably in the company of other adults...accompanied by good food and good beverages.  When do we leave?

Saturday, June 16, 2012

Camping? Let me call the hotel...

Of all the adventures I have shared with my girls, Girl Scout camp is one of my favorites.  Let me clarify:  Girl Scout camp with S has been one of my favorites.  The summer between 2nd & 3rd grade, she and I went to a special session at Girl Scout camp designed for the girls to bring an adult camper with them.  This is my kind of camping!  All I had to do was pack our bags and get us there.  From the minute we arrived, everything was planned for us.  We ate when they told us to eat, we rode horses when they told us to ride, we sang songs, made s’mores, paddled canoes - all when they told us to!  I didn’t have to plan a thing.
After 2 consecutive years of this, I couldn’t wait to take K!  She was 7 years old, heading into 2nd grade and I thought she'd really enjoy it.  I roped her Godmother into attending with us, packed the tent and sleeping bags and made the trek to camp.  K was really excited, too!  After all, she’d spent two years watching me take S and any self-respecting little sister will want to be included, too.  It’s in the handbook.  Monkey see, monkey do.
Our arrival at camp was marked by excessively hot temperatures.  Triple-digit temps, 4 days, 1 shower allowed (not per day, just one in total).  Also, there isn’t any ice at camp, so while we had our water bottles, it just isn’t quite the same to try to quench your thirst with lukewarm water.  Not exactly an auspicious beginning.
By the time we were getting ready for bed on that first day - just a few hours after our arrival - I was ready to go home.  I looked at K and realized that in all my excitement, I forgot the Girl Scout motto:  Be prepared.  I forgot that she would be on complete sensory overload and therefore, at the edge of total meltdown at all times.  She’s never been one to give in to tantrums, but once she’s overstimulated, she has a hard time sleeping and will easily tune out everything around her which can boil down to a safety issue at places like camp.  Sure enough, we lost her for a while on the 2nd day.  She wouldn’t participate in her dancing class and then when it was over, cried buckets of tears because it was over and she didn’t get to dance.  She barely ate - the food was foreign to her.  She loved riding the horse, though, and enjoyed swimming in the “refreshing” swimming hole (refreshing = frigid cold water since it is nothing more than snow melt, but with triple digit heat, it was actually refreshing).  Her Godmother handled most of this as I spent my time with S.  God bless her Godmother.
At the end of our 2nd day, we got to take our shower.  Hooray!  Except that the hot water wasn’t working and the water was ICY cold.  In an example of my stellar parenting skills, I strip the girls naked and shove S in the shower, helping her wash quickly before she turns into a popsicle.  K, in all of her naked glory, says, “I need to go potty.”  Fine.  I take her to the potty where she sits down, starts to go and....
a frog jumps out of the toilet from between her legs.
I am not kidding.  Yes, you may laugh.  It was pretty funny, but not to K.  Rightfully so, she flipped out!
For the next 24 hours, she kept asking me if there was a frog in her tummy.  I could not figure out why she kept asking me that and I kept assuring her that there was not a frog in her tummy.  Then, it occurred to me.  This is my very literal, language challenged, sensory overloaded, child.  She thinks she peed out that frog!
Needless to say, she’s not a big fan of frogs.  And we still had 2 days of camp left...
Fast forward to the present, a few weeks ago we are enjoying our pool and all of a sudden, K screams, “THERE’S A FROG IN THE POOL!!!!”  There were quite a few leaves in the pool and we assured her she was just seeing a shadow from a leaf.  This went on for at least 2 hours, until, finally, sure enough, we found the frog in the pool.  Oh, she was vindicated!  She was right and I’m sure she won’t let us forget it for a very long time.  Of course, this has been followed with the need to do a thorough frog search each time she wants to get in the pool.  
The irony?  She adores Kermit the Frog. 
We’ve not been back to Girl Scout camp. My camping days are over.  I can make s’mores at home - in the microwave if I am desperate.  I can sing camp songs by the pool.  K’s Godmother still speaks to me, so I guess we all survived.  Believe it or not, K would be the first to tell you how much fun she had at Girl Scout camp and wonders when we can go back.
Never, my frog-fearing girl.  Never.  We’ll save our adventures for places with hotel rooms and professionally maintained bathrooms that keep the critters out.

We have survived...

We finally reached the end of our school year.  Finally.  I'm pretty sure this one was measured in dog years.  I am so glad it is behind us.

I have been away from my blog for 6 weeks.  This is no way to build a readership, I know, but life is a journey and my journey has been bumpy lately.  Starting this blog meant sharing my thoughts and being vulnerable.  It means letting people know the good, the bad, and everything in between.  Appearances would dictate that I don't share the hard stuff, but to censure the blog in that way would contradict the spirit in which I started it.  Realistically, though, it's not always easy to be true to that spirit.  Some things are just personally harder to express and take time to process.

I spent the better part of May doing research.  More research.  The never-ending pile of research.  Why?  Because we had yet another IEP meeting to tackle near the end of May.  This was our 5th meeting of the year.  I think that is a record.  I wonder if I should call the Guinness Book of World Records?  I may have made history this year in terms of IEP meetings.

I'd like to say that this meeting was particularly important but the truth is that every meeting has been equally important.  They are also equally stressful.  This one, though, seemed more monumental because the discussion was to focus on K's school placement for 5th grade.

Armed with my delicious To-Die-For Blueberry Muffins (aka Suck-Up Muffins), we dragged ourselves to a 7:45 a.m. meeting.  My husband and I had spent a great deal of time discussing our different options, what we wanted to accomplish and our strategy.  This time, I was going to be the Good Cop and he was going to be the Bad Cop.  Have I mentioned how much this ridiculous game play irritates me? Still, we've learned to play the game.  Blech.

As expected, our options were reduced to two:  keep her where she is, with the same supports in place and where she continues to fail and make little to no progress or move her to a special education class at a different school.  Both options left us with a sick feeling in our stomachs.  The school team strongly recommended the special education placement.  I could speculate as to the different reasons why each person on the team felt that way, but it would be discouraging to do so.  Although I try to leave emotion out of it, this is always an emotional situation.  I was struck by how easy it was for them to let her go.  Again, I thought about how much love she has shown them, day after day, year after year and even if they believe it to be in her best interest, isn't it hard for anyone to say goodbye to her?  And what about her social and emotional well-being?  She has only ever known this school, these other children.  Moving her means changing everything - school, teacher, speech therapist, students.

Oh and the irony?  The same specialist from the school district was there.  You might recall from an earlier blog entry that he mentioned how the final decision on placement belonged with the district.  I found that funny because there's no way anyone but my husband and I will have that final decision.  At this meeting, he simply stated that these were the offers on the table and it would be a decision for my husband and I to make. I think he's finally getting to know me! So glad he figured that out!  LOL!

We left the meeting without choosing either option.  We needed to think.  I needed to process this monumental change.

In the meantime, while we thought about it, another challenge got in the way.  For some reason, the week after our meeting, K started experiencing significant anxiety.  She missed most of the school week and the pediatrician wants her to see a child psychiatrist for assessment and possible diagnosis of generalized anxiety disorder.  I'm not sure I can accurately describe what it was like to see her in this state.  She was not herself at all.  She was a wreck and it broke our hearts.  Her anxiety was based on an irrational fear and nothing we could do or say seemed to help at all.  We just had to be there for her and hope she could get through it.  Even now, I get teary-eyed thinking of her in that way.  Our happy, smiling, loving girl was replaced with a scared, shell of a girl without a smile or laughter or her normal buoyant personality.

Now our decision became exponentially more complicated.  Would she be more stressed staying where she is, but continuing to fail or moving to a new school with no guarantee of success?  I think I got another clump of gray hair and 15 more wrinkles that week.

For now, we've decided to accept the offer to move her to a new class at a new school.  We are also considering homeschooling.  The speech therapist that has been working with her at school since 1st grade is moving to the same new school, which made that offer significantly more appealing.  We shall see where this leads us.

Still, even in these difficult times, I look at her and realize how much more she brings to my life than I could have ever anticipated.  I am so much better as a person for having this particular child in my life.  When I think about how much I used to take for granted, I am grateful that my eyes have been opened.