Monday, September 19, 2011

Hakuna Matata

Saturday was a big day for Daniel.  He had been eagerly awaiting it's arrival. You see earlier in the week I mentioned that his friend Emma asked if he wanted to go see The Lion King 3D with her.  He dropped what was in his hands and said "RIGHT NOW?"  Ready to bolt out the door and go.  That says a LOT since he still needs to have some warning for everything.  The lead time for those needed warnings has shrunk.  But it is still needed.  So to see his drop his snack and eyes go wide and practically start off to the car, well, I knew this was a BIG DEAL.

The rest of the week went along with a daily countdown to Saturday from Daniel.  Emma and her entire family, lead by mom Elizabeth, who has her own experiences with a special family member, have been a blessing to Daniel and all of us. I have written about them before here.  So the planning of this wasn't too much of a surprise, but it couldn't be more appreciated. 

Saturday morning arrived with Daniel bouncing out of bed.  His first words were "I'm going to The Lion King with Emma today!!!"  Elizabeth and I tagged along. Partially to be there in case Daniel had difficulty, and partially because we both wanted to see it on the big screen in 3D!  Daniel mostly enjoys the movies but he usually gets impatient 60 minutes in and you have to talk him through the rest.  I didn't feel comfortable leaving Emma with that.  He loves popcorn and that's a huge draw, but it can also make him feel sick and he has no control to stop eating it.  He'll dig into whatever is available, then be sick for 2 days and onerier than a wet cat.  So, I thought I had to go, to help through this. 
Daniel also has trouble with any angst in movies.  He has been known to yell out "Pooh look out!" and "Woody!!!!" With fear that his animated friends will come to their demise.  The separation of reality and movie is a very fine line.  He seems to be understanding this more, if we remind him (ahead of time).  So before we left I had a talk with him about all of the scenes in this movie that have a high anxiety level.  When he watches DVD's he only watches what he wants, and in the case of the Lion King, it's the music.  He doesn't bother with all that pesky dialog!!!  So I prepped him for the fight scenes and stampedes.

Movie time came.  I told him we'd be picked up at 2:10.  We were on the porch at 2:05 waiting on our bench.  He wasn't going to miss a moment!!!  I could feel his excitement as we waited  for our friends. We bought tickets, popcorn, drinks, got our seats where I told him "15 minutes to show time".  An important part so he knows what to expect.  I wish he'd have more of a conversation with Emma, but when he gets excited it becomes even more difficult for him.  The excitement brings out dialog from movies in echoalia that exhibit, well, excitement.  She is so sweet though, it doesn't seem to phase her.  Finally, it was time for "Our feature presentation"  which is what Daniel likes to announce to everyone.  It was a packed house!  The two week limited showing has gotten everyone out to the movies.  Daniel was singing along with the songs, (ok, so was I).   And he was better than I had EVER seen him in a movie.  He didn't get restless, he didn't ask a thousand times how long until it was over, not even once. I think he was so happy to be with them he didn't want it to end.   It was wonderful, and I was so proud of him.  We all left the theater happy.

We decided that Hakuna Matata should be what Daniel thinks about whenever he gets upset by something.  If you don't know, (but how could you NOT?) it means "no worries".  I told him whenever he makes a mistake or someone else does, instead of getting upset he should think of Simba singing that song, because you honestly can't be sad when you think, of it.  It's impossible.  As you will see in my next post, he took this to heart, and of course it is coming back to bite me!  Hakuna Matata!  Oh, and here is a picture of Emma and Daniel outside of the movie theater.  Then I'll leave you with a song....

Thursday, September 8, 2011

School's in Session

I can't tell you how many posts I've written in my head since February.  Countless.  I just haven't been able, for whatever reason, to type them.  Then I get behind and I think, should I go back and write things that have happened of significance or just jump in to today and leave out all that got me to this point? I guess either way.  Nothing is really "wrong", it's my blog right?  Yet I struggle with it and, like those pictures you just can't get organized, you just keep getting further behind. 

So I'll start with now.  Daniel just got on the bus.  It's the third school day of the 2011-2012 year.  The day at the Sneathen house, when the pep in everyone's step slows down, the novelty wears thin and we are all just tired.  Our puppy, satisfied that Daniel is off safely (yup that's something you all missed. I said we have a dog), is curled up by the fireplace.  I'm pecking at the keyboard with one hand, since I broke my wrist and waiting for son #2 to arise.  Their schools start an hour apart so I work in shifts!  Watching the news while working in the kitchen this morning they had a story about how people get "post vacation blues" and I thought, hmmmm, you betcha. If it is common among the general population, I'm sure that us parents of spectrum kids get it worse.  I know I do.

Daniel started high school.  Yup. High school.  It's such a cliche to say, but where did the time go?  How did we get here?  Wasn't he just diagnosed?  Isn't he still 4 years old and climbing onto the school bus with me following my baby in the car?  It certainly seems like it.  In some ways not much has changed, and in others it seems like the longest road to get here.

This momentous time started out rocky. On his very first day of high school the bus forgot to pick him up. Well the actual bus didn't forget, someone screwed up, royally.  Can you tell I live with a literal person?He had a meltdown on our front porch wanting the bus to just COME  like it was supposed to.  It was too late and it had started its next run.  My saintly husband came home from work and drove him.  Daniel was in full in meltdown mode because this was NOT THE PLAN and Lord knows in his mind being late is one of the seven deadly sins.   But he recovered once he got to school and proceeded with his day.

We went back to him riding the special ed bus this year for many many reasons.  He hasn't ridden it since 3rd grade, I believe.  There isn't really a general ed bus for our neighborhood.  We are within the 2 mile radius required, but yet, it is too far to walk.  The kids he used to walk home with in 5th to 8th grade all have other things going on now that they are in high school, or they ride their bikes or go to friends houses.  It's fine.  It is just yet another reminder how far they have all come and well, we haven't.  Sure, Daniel's made great progress.  I know that.  But seeing how MUCH MORE the other kids have changed is a sobering reminder each and every fall of how much further behind Daniel is.  Watching my now 6' tall child climb the steps of that small bus 15 the same one he rode when he was 4, is surreal to say the least. 

Every fall, like all parents, we have to adjust to new teachers, figure out the kids schedules and expectations at school.  It is always very difficult to decide Daniel's classes.  He doesn't quite fit in anywhere.  He can do Algebra, but his reading comprehension is low for general ed.  He doesn't, academically, fit in with the basic room, but obviously not with the rigors of high school classes.  Yes, we have his work accommodated or modified where need be.  But nothing ever feels "right" to me.  When I changed his schedule from 4 core classes to 3, along with band and 2 academic supports I could breathe again.  So I figured that was a good sign and stuck with that.

The thing that gets me at every transition is trying to explain my very unique boy over and over again.  It feels a bit like the movie Groundhog Day and I want to just hit play on a recorder to save myself the grief.  I always feel like (most but not all) staff members have to restrain their eye rolls and whisper to their colleagues about the crazy autism mom wanting to control everything.  Why do they not understand that while I KNOW they know their jobs, they don't know MY kid.  I KNOW my kid, yet I always feel it. Every time. Mostly,  I feel their attitudes change as they get to know me.  But it is so frustrating to not be heard.  To be described as "anxious" (yes someone wrote that in an email to me) instead of proactive and having your kids best interest at heart.  It not only depresses me, but it angers me.  I actually said to my husband yesterday that I wanted to "go beat the crap out of _______".  Of course I was kidding.  Sort of. He laughed and commented that it says a LOT coming from me.  I am sometimes too calm and laid back. 

The fortunate thing through all of this planning and maneuvering and yes arguing with the school, is that Daniel doesn't seem to realize it.  I'm proud that I can keep calm and smile and get him where he needs to be with a hug and such enthusiasm.  It isn't until they leave that I slide into a slight depression and start perseverating on my next step.  Planning what to say next to whomever, reading emails of why the school isn't doing what they said they would, feeling like I'm falling deeper into sadness, being tired because my body is wondering why I am suddenly up when it's dark instead of sleeping in to 9:00 and having coffee with Regis and Kelly.

Then at the end of each school day Daniel comes bounding off the bus, asking me how may day was, unpacking his backpack with such enthusiasm and yesterday pulling out these pictures, so anxious to share them with me.  I remember the days when he had no "shared joy" the autism gurus call it.  He showed me his drawings with such excitement.  He couldn't wait to share and explain each one.  The same drawings he does over and over again. The same drawings I have a whole file of.   All the things he loves. Rainbows, bats, logos, Wallace and Grommit, Blues Clues.  He was so contagiously happy, that all the things that seemed wrong, felt very right.  If only for a moment.  How can you feel sad when looking at rainbows and Pooh?  Until the next day.  When it starts all over for me.  Then slowly, as things start to fall into place, we work out the kinks, the sadness dissipates, and we settle in for another year. I don't know when that will be.  In the mean time, I'll keep looking at my pictures, with happiness of his shared joy mixed with the sadness that in some ways, we are in the same place.  That things change, but they also stay the same.