Thursday, December 15, 2011

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.

Friday, December 9, 2011

A Day in the Life

December 7, 2011, late afternoon.  I am leaving Meijer, a huge store in this part of the United States.  It is based in Grand Rapids, MI not far from here, and it was the blueprint Sam Walton used to design his mammoth Walmart stores.   I lucked out and one of my favorite cashiers walked by and gave me the signal she was opening.  I quickly got out of line and into hers.  It truly is the little things that are encouraging.  Little did I know this was the high point of my day. 

I was making something new for dinner.  I love the promise of a new recipe.  It is simple recipe, but pretty time consuming.  I was going to start at 4:00 to have it ready by 5:45 when my 11 year old came in the door and the first thing I heard was a choking groan in the back of his throat.  "Not good" I thought.  I tried to be upbeat, but it was too late.  As soon as he saw me he dissolved into tears.  It wasn't really anything, he was feeling sad, and tired and needed to let go to his mom.  I'll take it while I still get it.  These moments of closeness with my boy will be disappearing soon enough.   It started my dinner late, but I dove in while he was working on his homework.

Meanwhile Todd came home.  Everyone was saying how good it smelled in the house.  Things were looking good.  Todd then said, "but I'm meeting my friend at 5:30 before the MSU basketball game."  Then quickly added, "but I can drive Zach to swimming on the way" to try to make up for the fact that my work thus far was for naught.  So I decided I could finish most of it, put it together the next day and stick it in the oven.  That is the last step anyway.  It should work. 

Daniel was in the basement, in his glory that he didn't have anything after school for the first day in weeks.  I let him be on the computer for some rest and relaxation.  Zach and Todd left.  I was packing up the dinner when the phone rang.  Zach was at the high school pool and it was dark and locked.  Todd had dropped him at the curb, and when he went in, that's what he found.  I knew he was in a rocky state so we talked for a minute to relax him.  He said two other kids were there with him (so I didn't totally flake on a cancelled practice I thought to myself)  I told him it made sense it was locked up, because the high schoolers who usually are practicing before them were at a meet.  I knew because we chose not to send Daniel.  We are easing him into the schedule for his first year of the swim team.  Since he had two other kids with him, I asked him to wait for 5 more minutes and then call me if a coach hadn't showed up.  He did and called me back with relief that his coach had arrived.  Crisis and an ill timed trip to the high school, averted.

I started packing dinner only to realize that I now had a filthy kitchen, no dinner and I was starving.  I threw Daniel's together which I have the basics on standby because he doesn't usually eat the same main dish as us, unless it is hamburgers or tacos or bratwurst sausages. (?) I make batches of his stuff and serve it with the same sides as we have.  So I heated a hamburger, gave him melon, and carrots and fed him.  I decided to order a pizza (which I could live on twice a day every day if someone would let me) but mid order I realized my wallet wasn't in my purse.  I couldn't give him the VISA number without it.  (I only have it half memorized). So I hung up in search of my wallet.  Only to remember that the last time I saw it I was at the stove watching my Labradoodle run by with it in his mouth with my husband in hot pursuit.   Our labradoodle, Oscar, has a  thing about stealing things.  He never eats them, he just finds great pleasure in snatching things and running through the house with us yelling "drop it" and "no" and he runs around tables and over the top of furniture to escape us.  It's super fun....for him.  Especially when you are in the middle of something.  At Thanksgiving, unbeknownst to us, he had taken my brother in laws wallet.  We found him in the living room with it in front of him on the floor pulling bills out of it, one by one.  My wallet didn't measure up for the fun factor as it only has that pesky plastic in it. 

After texting my husband demanding to know where my wallet ended up, I realized I was beyond hungry and getting really testy.  He told me 4 or 5 places he was sure it was and said he had "been no where else in the house".  This was obviously wrong since it wasn't in any of those places, but since he was having a drink with his buddy before the game, he wasn't feeling my pain and I don't blame him.  I finally located the wallet (oddly in a room Todd had claimed to have never been in) and called back the pizza guy for him to say 40 minutes.  Which put me right about the time I was supposed to be picking up Zachary. Sigh.  I decided to risk it.  It came in time for me to scarf down some pieces, yell to Daniel I had to run to the high school "quickly" and be back.  Another problem barely averted.

I pulled into the high school to see nothing but cars as far as the eye could see.  They were illegally parked, added on to ends of rows, on the grass.  The quick part of this scenario evaporated.  Not good.  After circling 3 or 4 times I decided the fire lane was my best bet.  I had to go in to get him, since we hadn't arranged other wise and that has been the routine.  I saw my friend who lives across the street pull in front of me (we had pulled out of our driveways at the same time.)  We talked for two minutes (the best part of my evening).  I abandoned my car in the fire lane, hoping that it would still be there ticket free when I returned but feeling optimistic that 10 other cars followed my lead in the fire lane.   I made it to the pool and it was empty.  I knew he must be in the locker room and chose to wait outside the door.  I amused myself watching the high school girls basketball be silly in the hallway, ignoring the anxious middle age woman hanging outside the boys locker room (me).  I have spent an unimaginable amount of time outside of a boy's locker room door, waiting for my children to appear.  Daniel takes his sweet time when I'm waiting.  Savoring the fact that I am helpless and unable to charge in and demand he speed up.  It's an annoying and helpless feeling.  Zachary finally emerged, I found my car where I left it, again feeling like I barely got by with another one this night.

I then realized Zachary had no food.  I looked at my tired boy and said "How about some McDonald's?"  He sighed with relief and said "that sounds perfect".  Off to the drive through, feeling guilty for once again getting fast food and happy that I felt like I just made Zachary's night.  We went home for homework.  Zach was working on his (again) and went through Daniel's folder only to see Daniel had a research assignment he had "started at school" with no mention of what he had already done.  Just a list of websites, but no mention of which he had visited.  When I ask Daniel questions about this sort of thing he becomes angry, he thinks I should know all of this (but really I SHOULD but for some reason the school refuses to communicate it to me).  He obviously doesn't want to repeat what he's already done, or he can't remember, or he doesn't want to remember, or he feels I should know or he simply can't communicate to me and pull the words together (most likely).  Doesn't matter, it always ends up with Daniel getting mad and having a tantrum.  He's 6'1" 215 pounds by the way.  Then I'm mad at the school for not just telling me the damn information.  So I wrote a note to the school saying if they don't tell me, I will just not even attempt it at home anymore. Done. (The response I received the next day was basically "Daniel knows what he did".  Sigh.  They really think I'm making this up?  Do I want to cause more tension and anxiety?  I don't think so.  Don't need it, obviously.)

Next, Daniel emerged from the basement and calmly said, "the lens fell out of my glasses". (of COURSE it did). I asked what he did with it and he replied in a off handed, what else would I have done way, "I just put it back in." Wait a minute.  What?  Something like his glasses falling apart will normally cause him to dissolve into a tantrum demanding that they be fixed immediately at 8:00 pm on a Wednesday night.  I asked him for his glasses and he removed them and went to shower.  I tightened everything as much as I could, with the set of tiny screwdrivers we have for such things.  I of course had a wrong size but made due.  There was a glaringly empty space where it is most likely that the correct sized screwdriver should be but was not.   I made due. I was still amazed at the calmness Daniel exhibited while delivering the news of broken glasses, but just counted my blessings while I looked up what time the Optometrist opened the next morning, planning on bringing him in before school, or with him missing as little school as possible (he doesn't like to miss ANY, it's his routine) I wanted to make sure they wouldn't fall apart at school.  THAT would be a disaster. 

Daniel emerged from the shower checked his glasses, satisfied with my workmanship.  He went to take his 2  5 mg Buspar that is his evening dosage of his anti-anxiety meds.  He uses a days of the week container so he has 4 per day.  1 in the morning, 1 after school and two at night.  He says, "Wednesday is empty.  I'll just get two more."  Wait a minute.  "Why is Wednesday empty?"  I responded.  "I don't know." (Teenager)  He answers while pulling out the pill bottle to 'get two more'.  I told him he was NOT taking two more and asked if he took all three that were in there after school.  He said "no".  I then asked, "well what happened to them, did you drop them? throw them away?"  "No, I TOOK THEM BY MISTAKE".  (he hates making mistakes) Let me get this straight,he took 15 mg after school instead of 5 mg.  Highly unusual since he is so methodical about every thing.  I worried for a moment that he took way too much (running a quick ER scenario through my head) then I remembered the Dr. had told me 30 mg / day would still be an appropriate dose for him.  I counted it up and realized he had taken 20 mg so far that day and gave him only one for the evening.  He wasn't happy because in his mind it wasn't "right:".  But he did accept it. 

When Todd got home from the game and I was very happily alone on the couch, I was relaying this evening to my husband  he said "No wonder he was OK with his glasses falling apart."  What would normally send him into a spiral was "oh well I'll just pop it back in" because he had taken so much anti anxiety medication!.  I hadn't even had the time to put this together or I was too tired to do so.  We dissolved into laughter on the couch, realizing that his mistake of taking too much medication showed us that he just might need a bit more, and that his mistake might have been a very good thing.  Come to think of it.  After reflecting on this day in the life of....maybe I could use a little of that medicine too.  I think I need it as much as he does, or maybe not, if I can end this day laughing with my husband on the couch about it. 

Saturday, December 3, 2011

One Small Voice

Last night Daniel went to a winter dance.  It was given by the teachers who run the summer camp he went to this past year.  I wasn't blogging then, so I don't think it's ever come up here, but it was an overall good experience for him.  At the very least it got him out of the house 3 days a week!  All of the kids from the camp were invited and it was held at the high school one district over from us, where the camp is held. 

There was a DJ and snacks and a chance to see some of the kids who attend different schools.  Daniel is always up for a dance and even though it's been a very long week here having swim practice every day, we decided to go. 

The invitation said "dress up" and at the last minute I wondered if Daniel would wear a tie.  He has never worn a tie, but he always complements Todd on HIS ties and he likes to play with Todd's ties and flip them around, so hmmmmm.  I took a shot and asked him if he would like to borrow a shirt and tie from his dad.  I told him he could wear his black jeans and I thought he'd look pretty cool.  Daniel agreed very quickly.  I was only hoping the shirt would actually FIT Daniel, and I don't mean that his dad's shirt would be too big.  The opposite, I thought it may be too small....

We went up to our closet and I immediately honed in on a purple shirt and a silver grey tie that has some purple in it.  I thought it would look pretty sharp with the black pants and Daniel agreed.  Once he started putting on the shirt I realized it would be too small.  To go along with the "dressy but cool and relaxed vibe" he had going on I rolled up the sleeves (to cover the fact that they were too short) and left the top button undone (because the neck was too small).  I attempted the tie, which I did an OK job with, but not good enough.  Todd came in the door from his meeting and fixed my inexperienced tie tying right away.  The result was quite good I thought.  Here's my handsome kid.

The dance was 7 to 9 pm and I decided to drop Daniel off.  It was going to be the first time he was just dropped off at a dance.  I have always volunteered or stayed in some capacity.  The teachers gave the OK on parents dropping off.  Unfortunately, I didn't prepare Daniel for this and on the way there I said I was going to drop him off and come back.   His response was an anxious, "I will MISS YOU".  His way of saying "there is no way you are leaving me there lady!"  I was a bit dismayed.  I hadn't been planning on staying.  I haven't been feeling well this week and have been plagued with headaches.  Two hours of loud music wasn't sounding like a great idea.  He seemed anxious after it came up and I knew I had to stay. After thinking about it, I realized he had never been to this dance before and I understood his hesitancy. I was kicking myself for not being more prepared. I texted my husband and said I had to stay, upon Daniel's request.  I was starting to text him "have wine ready" to him and he texted me first "I'll have the wine ready".  God I love that man.

Daniel hit the floor immediately.  I love to watch these kids dancing.  They are the epitome of "dance like nobody's watching".  There is no self consciousness at all, they just feel the music and move how the want to. It makes me happy! 

I could see Daniel playing with his tie and flipping it around like I see him do to Todd's.  He hates to be video taped, but I used my phone to sort of act like I was taking a picture (dirty trick, I know, don't judge) and I called him over to me.  Here is what I got:

Now if you look at the beginning when he walks up to me and starts adjusting his tie at the knot.  I thought that was so cute and such a "I look dapper" move.  I posted it to Facebook and had Todd go look at it from home.  Todd texts this to me:  "Baby Bear, One Small Voice". 

I didn't get it at first.  Then when we got home I asked Daniel where that "tie move" was from and he said "Baby Bear, One Small Voice" "Elmopalooza".  I looked it up.  Here it is.  At 38 seconds in, watch Baby Bear:

How can practically everything he says or does be a snippet of something he has seen or heard?  It amazes me.  It's like everything is on one giant editing tape and he immediately sifts through the information in his brain, cuts, splices and then spews it out. In seconds.  And it is completely appropriate for the situation.  If you weren't home watching all of these movies with him over and over, you would never know that it was "from" something.  But it is.  Almost always.  It's baffling.  Yet I'm thankful for it.  Yup, I said it, I'm thankful for his echolia.  Without it, he may not be able to communicate at all.  It gives him his voice.  I'm thankful my child has a voice, a way to express himself, even if it is filtered through Walt Disney.  Many kids on the autism spectrum don't have that voice.  Their parents don't get to hear their thoughts and feelings.  While  Daniel struggles with communication daily and gets frustrated at times with his inability to tell you what's wrong, I know we are still lucky.  So for today I am feeling thankful for that voice and to Baby Bear for giving me that small moment in time.