Just Keep Swimming, swimming, swimming.....

I have been asked, a lot, about how swimming is going for Daniel, so it is time for an update.  How's this?  He LOVES it.  What does he love? I'm not totally sure.  He cannot put something like that into words really.  At night, filling out his feeling journal (which is really a way to help him figure out his anger and emotional breakdowns, but we have to be positive so we also ask about what made him happy) he says "swimming with ________ and  ________."  So in his way, he is happy to be swimming in a lane with a couple of kids he's known for a really long time.  That's it. Pretty simple.  But from a parent's perspective this is what I think he loves, but doesn't know how to say:

1.  He loves being a part of a team.  For the first time ever, at age 15.  He is a part of something at HIS high school.  He has eluded to this.  "Swimming at my school".

2.  He loves the exercise.  When I pick him up he is in a state of calm.  All of the physical exercise seems to center him and calm him.  It seems to work out the angst of a 15 year old with tons of hormones and autism on top of it.  He could never put his finger on that, but I can see it.

3.  It improves his sleep.  There is nothing like good 'ol physical exhaustion to help you sleep!  As a mom who likes to sleep more than, well, anything.  (Daniel once compared me to a cat in a school project saying "my mom is like a cat, she likes to nap" nice!)  and having a kid with autism who didn't sleep for 9 years, the fact that he slept until 11:15 on Sunday makes me dance with joy.

4.  He gets to be part of a team,  but work independently at his own pace.  How much more perfect can that be for a person with autism? It couldn't be, is my answer.  Swimming actually puts the I in TEAM! 

Just to be clear here.  He is NOT participating in the same way as everyone else.  The REST of the team is there at 6:15 am or 6:45 am depending on the day of the week.  They work until 7:30 am.  Then go back after school from 3 to 5:30.  Daniel does not do this.  From the book of "learn from your own parenting mistakes" we are easing him into this swim team thing.  We are taking cues from Daniel and (gently) nudging him.  HE is deciding what he can handle.  He isn't telling us this with words.  I constantly get parents of special needs saying to me "my child can't talk" in a way that says they are annoyed with me that my child can.  When I say things like he "tells" us, he tells us with his moods, with how he reacts to something, whether positively or negatively.  You just KNOW your kid.  You have to step back and read them. 
We are lucky that our coaches are open to any and all of this.  They just want him to keep swimming.  To love swimming, and to be in the pool as much as he can handle.  In fact, the coaches excitement has almost thrown me off course a few times.  But I have had the sense to listen to my gut.  Again. 

So in reference to above where I said "learn from my mistakes".  Here was our mistake.  When Daniel was 6 he started his MSU swimming with KIN (Kinesiology dept).  Each spring they go to the Special Olympics.  After two semesters Daniel did the Special Olympics swim locally.  He still couldn't swim independently, but did one event that he had a flotation devise on and swam.  One "noodle swim" with two much older, larger individuals, and something else... I can't remember.  He won a first place medal in every thing he did.  Sounds good right?  Well, he could care less about those medals even though they hang in his room.  But something else happened that day. I have no idea what it is, but SOMETHING happened.  We waited, a lot.  He seemed to do fairly well (as well as could be expected).  I believe at the time he had a Game Boy or DS or something and we had that for in between times.  But from that point in time forward, he never went back to Special Olympics.  Ever.  He is now 15.  When he hears "Special Olympics" he is like "no way not gonna do it" and will not budge and usually escalates and whimpers and yells.  I have no idea why.  But when he refuses, you are not going to get him to change his mind.  EVER.  Whatever happened that day, or whatever he hated, he has never been able to communicate to us, and we can't get him to change his mind.

So we went into this swim team thing with a lot of apprehension. I know that if we push it just a little too far, we might ruin the whole thing.  He has 4 years to participate with this team.  I'll be damned if I'm going to screw it up by getting a bit too excited and pushing it.  I know some people probably think we are taking it too slow. I.DON'T.CARE.WHAT.THEY.THINK.  I refuse to mess this up.  This is his only chance to participate is something like this.  So here is what we are doing to (in the words of Tim Gunn), make it work.

1.  Daniel is not going to morning practices, at all. I don't even think he realizes they exist.

2.  He is going after school to swim.  For a few days I went into school at the end of the day, brought him food (we must feed the beast) and brought him his Buspar (anti anxiety medication).  Then walked him down to the pool.  I stayed for practice, 3 times.  For Daniel, I say "three times is a charm".  If he does it three times in a row without incident, you are probably good.  You see, the first time may be a fluke.  The second he knows what's going to happen and something new might come up.  The third he is fairly comfortable and if he is going to revolt, it will be on the third try.  Also, for all of you who have started and failed exercise programs over and over (I speak from experience) the first time you are super gung ho and sure you will soon be running a marathon.  By the third time you are exhausted and wondering why you decided to do this. So if he got through 3, I was pretty sure, he'd be in. 

3. After the third time of me going to school and staying until 4:30 (cutting it short.  You could see by 4:15 he couldn't pick his arms up out of the water he was so tired so we'd push him until 4:30 to build endurance but not so far that he'd vow never to return), I arranged to have the social worker at the high school walk him down to the locker room and get him settled at practice.  The social worker (lucky us!) happens to be a man and could go in the locker room and continue to teach Daniel how to organize himself.  This was taking a surprisingly long amount of time.  He was not finding the locker room independently, nor was he able to navigate his padlock, which he usually has no trouble with.  I'm not sure why this was the case, but he needed time.  I continued to email the social worker and tell him the schedule of the days for swimming and he helped all but one day, and he arranged on his own to have a male para pro take over that day. I didn't even have to ask!  It was awesome. 

4.  We decided to have Daniel only compete in home meets.  This is where we have gone back and forth.  The first two meets had like 12 or more schools involved and sounded like a nightmare for the sensory system. Loud and chaotic.  Those were easy decisions to skip.  But this is Daniel.  We know him.  When he doesn't know where he's going he gets very anxious and wants to know "how long will it take to get there?" and escalates.  Todd and I decided to have him only go to the meets where he is used to his surroundings. Familiar surroundings are very important to him.   We keep telling ourselves "he has four years, he has four years, don't push it".  So he hasn't gone to a meet.  Yet. 

5.  When others were bringing him down to practice I was coming to get him at 4:30.  Last Friday I went in at 4:30 and looked at Daniel and he was a new person.  I could tell he wasn't exhausted.  He had gotten over that hump.  The coach glanced up at me and smiled and simply said, "I don't know if you are getting him out today" and I knew we had done it.  Daniel waved at me and instead of saying "am I done, can I get out?" he touched the wall and made his turn.  And just kept swimming.  I was proud and relieved.

6.  The coach seems to know how to push me just enough not to make me run away screaming.  Very important.  I see when I'm being pushed.  But I like his style.  He looked at Daniel and me that day and said "come in tomorrow, 9:00 am for Saturday practice" and basically walked away.  I'm thinking 9:00 am on a SATURDAY?  Daniel looked at me and said "do I have to set my alarm (he's not a fan) and I said, "no I'll let you sleep as long as possible then get you up.  And he got up.  Willingly.  And went to Saturday practice.  The coach says it nicely.  He seems to know, just how far to push it.  He was also thinking and planning how to work Daniel into the away meets.  He made me think about it, and I finally said "NO" and held my ground.  I told him his history with never doing things again, and he agreed, we don't want that to happen.  He listened.  Isn't that awesome?

7.  The coaches believe in 100% participation.  When we agreed on the first meet he said they'd put Daniel in a 50 free style and that would be it.  I agreed that was plenty.  Enough to get his feet wet (ahemmm, sorry) and enough to make him feel part of the team.  Sounds good.

It has been a HELLUVA lot of work.  But it is SO worth it.  I can see how this is positively affecting him. He seems calmer, happier and frankly, he is already slimming down.  Yesterday I went in a bit early because they were taking team pictures.  I knew that would be crazy so I went in to facilitate.  I stood back, watching the kids who have taken Daniel under their wing.  Who were helping guide him through the confusion.  Daniel was irritated because he didn't want to put on the team shirt and warm up pants and get them wet.  I finally went over and whispered that I would put them in the dryer when we were done.  That seemed to do it.  He went over and got into the picture.  Kneeling in his row.  Smiling for the camera.  Lined up with his teammates wearing his new shirt with all the swimmers listed on the back.  His name included.  He was patient, he waited for the photographer.  He waited for everyone to get situated.  He was doing what everyone else on his team was doing.   It made me very happy.  It makes everything worth while.  How does the saying go? The harder the work the greater the reward?  I think that just about sums up raising a child with special needs.

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.