Wow, Luther!!!!

Swimming.  It has been a wonderful thing for Daniel.  He has always LOVED the water.  LOVED. THE. WATER.  When he was 6 he started with a Kinesiolgy program at MSU, one on one with a KIN student.  He wouldn't put his face in the water.  But man did he love being in the water.  He needed flotation devises.  Jason, yes I remember his name from 9 years ago, because when someone is that awesome, you remember their name.  He was Daniel's first coach and I was scared out of my freaking mind to hand Daniel over to him outside of that locker room.  Daniel just was potty trained. The autism thing was two years fresh.  Information wasn't available like it is now.  You had to look, really hard.  Life was different.  Jason worked with him, came up with so many "tricks" to get his face in the water.  He finally put it in, briefly, at the end of the semester.  The overwhelming fear was alleviated and he could move on.  Then coach after coach, semester after semester.  We loved some, some we didn't.  We touched their lives and they touched ours.  The slow progression was always there, but it was always slow.  If there is one thing you have to have with a child with autism it is patience.  If you don't keep at something, it will never happen.  You see our kids like their safe world.  Who doesn't?  Our job is to nudge them, lovingly, forward.  Independence and socialization.  That is what we strive for.  If you have those two things you can find a place in the world.  This goes for everyone.  You can be the smartest person in the world but if you can't be a part of it, no one will know. 

That is a big concept.  But within that big concept it is made of up little things.  Little things that all add up to one big thing.  We have to celebrate the little things because they all matter.  Every single one of them.  Sometimes when you accomplish the little things, you know that the big things are possible and sometimes they get you closer to the big goals. 

For Daniel, swimming became something that he could do.  He couldn't (and didn't want to) play soccer, or baseball the way the other kids did.  There is too much going on, too much confusion, too many rules, too much yelling.  Oh and running, too much running :).  With swimming you get in a pool and you swim.  Back and forth.  Repetitive. Back and forth.  Over and over.  This works.  It is also great exercise.  For Daniel, the water is calming.  The exercise is centering.  I can honestly say when he is swimming he is happy.  I'm not guessing at that.  As his high school coach last year said, "He is the only kid I have EVER seen, who smiles while he is swimming".  He comes up for a breath and he is grinning.  Sometimes giggling.  It is contagious. You can't help but root for him.  Swimming made him a part of a team for the first time in his life as a freshman in high school.  It took him until much later before he could do these laps.  It was that gentle nudging over time.  Until suddenly one day he was doing it.  He didn't know that is what we were aiming for.  But I did.  One of the few clear goals, besides independence and socialization was that he would some day be on his high school swim team.  In some capacity.  In Daniel's way.  It might not look like everyone else, but he would do it.  I didn't think it would be freshman year.  But it was.  And it was wonderful.  I look forward to next year.  He swam a lot.  More than ever before. But he didn't always understand the "race" part.  So we worked on that.  Oh....you have to actually TOUCH THE WALL to finish.  It's like I could hear in his mind, 'why? I'm here aren't I?'  He does it his way.  And that is o.k. 

It became clear very quickly that he did not know how to dive or how to do a flip turn.  It's funny how when something amazing is happening I immediately realize what is next.  Like, great, you are on the team, now let's dive.  Let's do a flip turn.  When Daniel doesn't want to do something, he does NOT want to do something.  That fear radiates through him and comes out in yelling "I DON'T! I CAN'T. I WON'T" and YOU CAN'T MAKE me.  He will fight, beg and plead.  So we gently nudge.  We make him try a few things then give him a break.  We have been working on diving.  He still puts his arms out and jumps in.  He can't go in head first.  I get it.  I was scared of that too.  The flip turn?  Forget about it.  His coaches begged him to try to no avail. 

He is participating in Blue Fins swim club right now WITH his brother.  This is huge people.  They are both doing the same activity at the same time with the same people.  While I sit back with my morning coffee and watch. This in and of itself is unheard of.  Did I say huge?  Does it look the same for both of them?  No.  Are they both doing it?  Yes.  And that is awesome.  The exercise is great.  It is a great way to start the day.  One day they worked on flip turns.  By the grace of God, we weren't there.  But there are some much younger kids there and in one day, they were doing flip turns. One freakin' day.  I come the next day and they are doing it.  Did I say after one day?  This has a very small effect on me.  It is just one of many reminders of how much harder things are.  But I do not dwell on that.  I remember that when you do accomplish something it makes it that much sweeter.  Do I wish it was easier?  For sure.  But nothing great usually comes easily does it?  Looking up quotes I found my favorites:

 "Success only comes before work in the dictionary" Vincent Lombardi

"The harder the battle the sweeter the victory" Bob Marley

"We must not allow other people's limited perceptions to define us" - Virginia Satir

I started to think about Daniel as a young boy.  He is 15 now.  I remember bringing him to the park and he got on a ladder to go down a slide.  It was before he was diagnosed.  And he just hung there.  Feet on a rung, hands on one.  Hanging on.  He didn't know what to do.  Other kids just scramble on up.  Parents holding them back to not fall or go to not go too fast, and he stood there.  Not sure what to do next.  I took a foot and moved it up a rung.  Then his hand and moved it up a rung and physically showed him how to climb.  I knew this wasn't "normal".  Why would I need to show him this?  Isn't that natural?  But taking him through the steps, breaking them down tiny step by tiny step, showed him what to do.  So that is the approach we have always taken.  Everything gets broken down into the tiniest steps you couldn't even imagine.  That you never even thought of. 

After the swim club I said "Daniel, did you see all of those little kids doing flip turns?"  "Yes" he answered.  "You can do it if they can."  He didn't say anything, but I planted a seed.  Then my husband and I were having dinner with Daniel. His brother was at baseball practice.  We started talking about doing a somersault in the water.  Not a flip turn.  A somersault. I didn't want to say the trigger panic phrase 'flip turn'.  Because a somersault is what he needs to do first right?  If he can't do that, he can't do a flip turn.  Then we moved onto doing a "Loop de loop".  It is one of his old time favorite computer games "Freddi fish and the case of the missing kelp seeds"  The story is this:  One day, Freddi Fish visits her grandma Grouper and finds out that her treasure chest filled with kelp seeds is gone and her grandma is worry because without it, there will be no kelp in the underwater sea and that would mean no food for the various fishes that live under. Freddi promises to find the treasure and bring it back. Eventually, Freddi encounters her best friend, Luther, who was trying to do loop-de-loops but is not succeeding. He eventually bumps his head on a tree and a green bottle fell down from it, giving a clue to something, perhaps to the treasure chest.....Use what they love to motivate them.  He thinks that computer game is hilarious.  Luther tries and tries while Freddi cheers him on.  Sound familiar? 

So we took this story and applied it to swimming.  It made him smile, ever so slightly and I knew we had him.  I said, "I'll cheer you on Luther if you try the loop-de-loop."  He said, "will you say 'WOW, very impressive Luther" and I promised I would yell it SO loud.  The next day he started trying.  His coach Brianna got in the water.  He wasn't quite going over.  I asked her if she'd get in and flip him over to give his body the feeling. She did.  He was angry.  He was fighting it, he was complaining.  Whenever he is about to embark on something new he goes kicking and screaming. But he kept at it.  I knew it was coming.  He did it with assistance!  I yelled "WOW LUTHER!" and he smiled. 

The next day he was fighting it.  Yelling, complaining.  Then on his own he said to a coach, "hey Cody, want to see me do a somersault?"  He said "sure".  And he did it.  All on his own.  In two days.   When he's ready, he's ready.  And he was ready.  And we all cheered him on.  And it was fabulous.  And he was so proud.  And so was I.  And I cheered for Luther, I mean Daniel.  And he grinned from ear to ear.  It was a good day.  Two days? One year?  Whatever.  The harder the battle, the sweeter the victory.

Now to get him to swim toward a wall, full speed and flip over and push off of it just at the right moment.  Us mom's are always looking forward aren't we?

Be the Hare!

We spent last night at a middle school swim meet for Zachary.  Daniel came to watch, I was timing and Todd was there for a while before he had to run off to a city council meeting.  Daniel was very patient at this very long meet.  Tonight it is his turn.  Yes, tonight he will compete in an honest to God swim meet. 

Over Christmas vacation he participated in a Blue and White meet they called it.  It was a scrimmage between his team.  I was a ridiculous nervous wreck inside but once again put on my happy mom face and worked through it.  He was THRILLED.  He actually swam in two "races", the 50 free and 100 backstroke.  He finished.  And when he did I could see his excitement.  He finished waaaaaayyyyy behind everyone else.  He didn't care.  I was very nervous that I would care.  You see, I'm a wee bit competitive.  OK, maybe more than a wee bit.  Maybe a lot competitive.  But I impressed my self.  Watching him just be a part of the team, finish his races and be excited was ENOUGH for me.  Just being real here, I didn't think it would be.  I am often told people like my honesty here, so I'm being honest, even if I sound terrible, but I was scared I'd be mortified.   Isn't it wonderful when you rise above yourself?  I had no idea I had that in me.  I just watched him with a smile on my face.  It was enough because I know what a huge accomplishment it is for him to even go to practice every day.  I know what an accomplishment it is for him to sit through an entire swim meet.  I know what an accomplishment it is to get him to swim for 2 hours.  It's astounding as a matter of fact. 

Since that time there have been away meets, which we are not going to, and a home meet, but with 4 teams.  That is just a lot of people.  So we actually went to watch that one.  He wore his warm up,(see picture above) sat with the team.  Told everyone good job, nice race and incorporated himself into the team that way.  I sat with him and showed him things during the meet about how things are "done" so he could take it all in, without having to worry about swimming. 

Then one day I came into the end of practice to pick him up and they were practicing "starts" and "racing".  When I entered the pool it seemed like everyone was standing around, but they were waiting for Daniel to finish his race.  People were cheering for him to swim.  He was about half way and barely moving.  I already knew he didn't really understand the "race" part of it.  I have seen him swim hard against his brother.  Something about that motivates him to SWIM, he doesn't want his little brother to beat him, so he kicks it into gear.  But in this instance, and in the scrimmage, he looked like he was out for a Sunday stroll.  It's sort of adorable.  But it was clear to me that he had no idea what he was supposed to be doing.  Especially when he yelled, "do I have to swim to the wall?"  Um yeah...

After that practice I was talking to him about races.  How it's different from practice.  The only example I could think of about going fast is "the Hare" from Aesop's The Tortoise and the Hare.  He loves that story and knows it by heart.  He liked the comparison to going super fast like the hare.  We have talked about it a few times since then.  I was telling my cousin this story yesterday and she said something like, 'you need to find a story with a different moral, like Elmo winning a race, the whole point is that the tortoise wins'. But we were laughing and Beckie was yelling into the phone "BE THE HARE DANIEL" which made me laugh.  But  I do understand the conflict with the moral, and unfortunately, so does Daniel! So if anyone has any suggestions, please leave a comment.  If it is Sesame Street, or some other animated movie, that shows trying your best in a race, that would be the best motivator. 

Last night after Zachary's meet, Daniel was riding home with me in the car.  He said, "I'm not a tortoise, I am the hare! A tortoise has a very heavy shell that makes him slowwwwww."  I was laughing along with him and said "yes it would be hard to swim with that heavy shell!"  (again, turtles swim and as far as I know rabbits do not...I need some help here people!)  But we were joking and having fun.   The last thing he says at night is what he is going to dream about.  He said he was going to dream about being the hare. 

This morning he came bounding into the kitchen excitedly saying, "I dreamt I was the hare!"  But then he looked at me and said "but slow and steady wins the race" with a bit of a question on the end there.  I replied that slow and steady wins only the very long races.  In a very short race fast fast fast wins, so you have to try to go your fastest.  Be the hare. This seemed to satisfy him.  He is very excited for tonight.  He has proclaimed that he will "Be the hare." What we really want is for him to understand the difference between a race and practice. Which he did not.   Todd and I were laughing about all of this on the phone this morning because it really doesn't make any sense at all.  It is all conflicting, but Daniel is really enjoying the thought of being the hare.  Todd I can't wait to find out what this means to Daniel.    Knowing him he'll take it literally and go super fast (for him) and then stop at the end and not finish. Just like the hare.  Or he'll try his very best, which is what we want from everyone.  Or...who knows?!  At the very least, it will be interesting!  Seriously, what have I done!?! 

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.

50/50

With the words, "make that call" I was thrust toward my next journey.  Daniel's three words were about the high school swim team.  I had explained to him that the high school has a swim team, the same way they have a football team,(this would have never occured to him) and I wondered if he was interested in becoming a part of it and if I should call the coach and talk to him.   I was expecting a stressed "I DON'T KNOW".  Which is usually what he says in these situations.  He becomes agitated because he doesn't know what to expect.  It is so uncertain, he doesn't know what to say.  Not this time.  He said, "make that call".  Okey dokey.  I guess we are doing this.

Today is the first day of practice.  For Daniel at least.  Yesterday was the "official" first day.  We didn't make it.  I was still waiting for the forms from our pediatrician saying Daniel has had a physical and is fit to swim.  I got those yesterday afternoon.  Now we have what we need.  So today's the day. I thought I would write this blog before I actually know what happens.  I'm not sure if  that is a good idea, because then I am letting you in on my secret.  That I am a total obsessive compulsive wreck planning for these things.  Is that what helps it work?  That I think of everything (or almost everything) and perseverate until it happens? Maybe.  Maybe it would all work out anyway and I just cause myself a ridiculous amount of stress and I should just trust.  Nah. Not going to happen any time soon.

After I was requested to "make that call". I sent an email to the swim coach.  Well several emails because our schools website, in my opinion, kinda sucks.  I looked him up under athletic coaches and emailed him.  I got something back immediately saying it was an incorrect email.  Of course.  Then I went on a hunt and finally tracked it down.  I didn't hear anything.  I called the elementary school where he works as a PE teacher.  Several days later, I heard back.  He did email me back, I didn't receive it.  This seems to be happening with some frequency from the school.  I'm not sure if it's them or if it's me, but it is super annoying.  I had a great conversation with the coach.  I had heard he is a great guy and my conversation would lead me to believe that is true.  He was totally open to whatever worked for DANIEL.  What a relief. 

I also talked to a teacher about where Daniel could eat a snack after school but before practice.  He is like a hungry grizzly bear after school and there is NO way he could do this without eating.  I got that part arranged.

When I found out practice was 2 hours I thought.  Wow.  Maybe not.  The coach said, Daniel can stay as long as he can handle it.  When I said that he is committed to his MSU swimming until December 8, he said, that's fine.  He can come when he can.  When I asked about meets, he said he would absolutely be able to compete.  Everyone gets to.  This sounds amazing! How wonderful!  He said I should stop by after school some day and get the needed forms.  We missed the initial meeting because Daniel was sick.

So, not once but twice I went walked into the high school at the end of the day.  Walking against the flow of teenagers streaming through the doors.  The PACKS of kids, who all look amazingly old to me.  Each time I walk in there I am so thankful that Daniel is over 6' tall.  I feel like he would get swallowed up into the crowds and feel trapped and panic.  Instead he at least is big enough to look over the top of most of them, and while he's super solid and bulky I can't help but wonder what he feels like getting bumped and jostled in those crowds.  For a person who likes to be touched on HIS terms only, it must be a nightmare.

These two trips left me formless.  The head coach wasn't there when I was.  We had different ideas of what "after school" meant.  I did find the assistant coach and talked to him, with Daniel present and we got to check out the pool, which was very good.  It is a newish facility and pretty impressive.  Daniel loves a pool as we know and this one definitely measured up.  So something good happened. One coach met Daniel, he got to see the surroundings, which he always needs.  But I still didn't have what I needed.  What I also saw was the hallway/locker room area, after school.  Full of "jocks", kids screwing around, hanging out and generally doing all the things that freak Daniel out.  That is unpredictable of the highest order.  What other people see, I do not.  My mind rushes through all of the things that could set Daniel off.  It ticks off all of the problems we will have to over come.  I don't see anything as I used to, and when I'm planning something like this, to make Daniel a part of something, he hasn't been before, I see the problems.  I see the problems first so I can (try to) find the solutions and clear another path open for Daniel.  I firmly believe our kids need to be exposed to as much as they can tolerate.  That's how they learn.  With Daniel in high school, I am feeling the opportunities might be peaking.  We need to seize them. 

I talked to the coach about staying for practice.  At least for a while, until he is settled in.  I can't imagine just leaving him.  I know I probably should, but there are so many problems that could arise.  He needs to get settled.  Know the routine.  If he is having a hard time I can assist the coaches, but otherwise I plan to stay far out of the way in the stands.  I also need to decide when he is ready to leave.  He is used to swimming for an hour.  But right now, I don't know what the plan is.  I fear if they try to instruct him too much, he'll get upset.  I have no idea what to expect.  If things aren't going as Daniel expects he'll get upset and not be able to communicate well.  I don't know what he's thinking because he can't really express that to me.  It's a guessing game and a waiting game.  It's us jumping in and me holding my breath and hoping. The coach was hesitant about me staying but agreed as long as I stayed out of the way. 

However I was still formless after these two trips to the school.  I emailed the Athletic Director thinking he might be easier to get a hold of.  He was.  I got the quick answer to go the Michigan High School Athletic Association website and print them off.  Really wish I had either thought of that myself or someone else had mentioned that to me....I always feel self conscious asking so many questions. On one hand, I have to in order to prepare Daniel as much as possible, but I also don't want to come off as a crazy person.  I could have asked them approximately 100 other questions and didn't.  Honestly, I still don't know if it would have made me feel better, or feel more anxious.  Like I said, it's a balance that I am constantly trying to find. 

The truth is, what I'm really afraid of is the locker room.  I can't figure this one out.  Zachary always comes out of the locker room rolling his eyes, horrified at Daniel in the locker room.  Zachary is prudish, Daniel is......NOT.  He just walks around naked, singing and "air drying".  This never fails to make Zachary crazy and scurrying from the locker room in a frenzy just to get away.  Daniel doesn't care.  I, never having been in a men's locker room, am not sure what the protocol is.  I have asked my husband, since he was in a high school locker room for 4 years of football.  I haven't gotten an answer.  He's probably afraid he'll send me into a state of panic if he tells me the truth and really, come to think of it, it may be better if I don't know.  High school boys locker room.  Really,  that sends a shiver down my spine. 

Last night I made a list of locker room rules at the high school.  Yes, this is an actual list that I typed onto my computer and saved under "locker room rules":

1.  You will not take a shower at the high school unless mom or dad says it is OK that day.  You can either take a shower when you get home or in the evening before bed when you usually do.
2.  You will quickly dry off with a towel and get dressed.  no sitting on the bench naked to air dry.  You will keep the towel around your waist if walking around naked.
3.  There is no singing in the high school locker room. You can do it at home.  (somehow I don't think singing "I love trash" ala Oscar the Grouch will be a good thing.
4.  The team practice goes until 5:30.  Daniel is probably going to leave earlier than that. In the beginning Daniel will only stay for about 1 hour of swimming.
5.  Daniel will not yell or bite. You can take a break if needed or talk to the coach.
6.  In the beginning either mom or dad will be there in the bleachers in case you need help.  Eventually you can stay with your coaches and the other kids. 

I have also asked the Teacher Consultant in charge of the friends (ELFS) group at school to see if there are kids who can be his" buddy" so to speak during practice.  Haven't heard anything back.  Asked for that weeks ago.  The wheels of information seem to turn very very slowly.  It is frustrating.

Today, Todd will come at the end to facilitate the locker room process.  I simply don't have the necessary parts to get into that locker room.  So today is the day.  Daniel is supposed to practice with the boys swim team.  I don't know what to expect..  I have no idea what will happen.  I don't feel prepared.  I feel neither confident nor panicked.  I've done this enough to know that our weeks of preparation is as much as we can do.  I am, however, hopeful.  This would be a great thing for him.  He loves the water so.  It's his only chance to be a part of a high school sports team.  It's great exercise for him.  It's all good. Right?  Please tell me it's all good.  I need some positive reinforcement.

So all of this leading up to today.  I still feel like I know nothing.  My stomach is in knots.  This might be the first and last day of his swimming career at the high school, it could also be the best thing that ever happened to him.  I think it's about 50/50.  I am second guessing myself.  Maybe we should wait a year, but it's too late. Daniel expects it and I need to follow through now.  For better or for worse. Wish me luck.

Progress and Powerless

Just when things are moving along nicely.  . . Friday, Daniel had an Activity Night (again!).  I went and worked concessions.  This gave me the opportunity to stay out of Daniel's way, yet be there for him if he needed me.  Without any prep he came and checked in a few times.  Once to tell me he was going to the hall to play Foosball, another to go to the bathroom (which tends to be what he does to take a break and find somewhere quiet).  Once he came and bought some M & M's.  It was good.  A few times I glanced out of my concessions room when there was no one there asking for Coke or candy or pizza.  I could see his head over the group, a whole head taller, jumping with the rest of the kids, arms in the air, dancing with the beat of the music.  He was having a blast.  I couldn't see who he was with and it didn't really matter.  He was having fun and I wasn't stressed.  Progress. 

On the way home I asked him who he was dancing with, to which he replied Emma (who I know and love) and "my new friend Nora".  (not her real name)  I hadn't heard this one before.  I was curious, as mom's tend to be, so I emailed my friend to ask if she knew who this girl was.  She did, and assured me of her sweetness.  It made me happy to think that he bonded with someone new while rocking out on the dance floor.  Monday he came home from school and as we were talking about his day he was reaching into his pocket.  I asked him what he had, since he rarely has anything in his pocket.  He pulled out a small little card and said "My new friend Nora gave me a Valentine with a sweet treat attached".  Yup, the small little Sponge Bob Valentine had an Air Head attached.  He seemed pleased.  Being an 8th graders they don't all exchange, so I hadn't even thought about it.  It can be hard to read his feelings in these situations.  I believe he was happy to receive it and be thought of, but he tossed it on the table, where it still sits.  I have brought up a few times how nice it was for her to think of him and give him a Valentine.  He agrees.  But that is as far as it goes.  But still, it's progress.

Today he had swimming.  His Tuesday girl wasn't there when we arrived.  Unusual, but it is only week 3 with her.  We waited in the lobby while Zachary bounded up the stairs to the balcony where we watch and he eats his snacks and plays with his I Touch.  Daniel looked at me with some concern and asked where she was.  To which I replied with a big smile that she would be there.  While in my head I was screaming HURRY UP, because I know we only have a few minute window before he starts to stress.  Swimming is very important.  Any time lost in the pool, causes more stress.  So we waited.  He asked me again.  He told me he was "getting worried about her".  I assured him she was fine, just not there.  He asked me again.  I suggested he ask the Professor if he knew where she was.  (Ha! getting him to perseverate on someone else!)  But also I was trying to get him to problem solve and make sure she hadn't called in sick.  The Prof had no answer.  Daniel decided he'd "go wait at the door".  THIS was new? I let him.

Other coaches were coming in.  I could hear him quietly saying "she'll come", and "she'll be here", hoping in my head that it was true.  Although I was losing faith.  Quickly.  I could see him starting to deteriorate.  Nothing too obvious, only obvious to me.  The Prof. went to the locker room to set up a back up coach.  He came back and said, "give it two minutes and we'll  have him swim with the T.A.".  I sort of knew that it would be two minutes too long.  But I kept quiet.  I'm not sure why.  A few years ago I would have stepped in and solved it all.  At Daniel's age of 14, I know that doesn't always help him.  So I smiled and tried to reassure him, and waited. 

The T.A. came out and introduced himself to Daniel.  Daniel politely shook his hand and replied (sometimes these rote responses are helpful) then Mr. T.A. said, "we get to swim together today".  Six simple words.  But this slow climb to the top of the cliff sent Daniel over the edge.  He started yelling.  And jumping. And flailing his arms. And stomping his feet.   Did I mention yelling?  It is quite a site to see a 205# 5'10" "boy" doing that in the lobby of Jenison Fieldhouse on MSU's campus.  I smiled.

I smile because my facial expression is the only thing he can see in a fit, so if I'm not upset, it throws him off.  I think it may make other people think I'm a lunatic.  Or that I'm brave.  Either way, it is something I've trained myself to do, despite what I feel like inside.  He fell to his knees.  Mr. T.A. said they'd have a great swim. Daniel said through his tears, "I WON'T swim with you! Only Tuesday girl!!" (he said her name, but you see what I'm doing).  WOW.  That's new.  (they sometimes surprise us).  This time it wasn't about the swimming.  It was about swimming with HER.  Interesting.  This also proved to be a more difficult situation to get out of.  I smiled and assured him, he'd have a good swim (yeah right! I'm thinking  DISASTER!) still smiling.  "Go ahead Daniel, you can do it".  He got up and (still yelling) marched into the locker room.  The place I cannot go.  Men only.  MSU athletes abound.  I. can't. go. in. there.  Powerless. 

So I went upstairs.  Filled in my friends and waited.  He came out of the locker room, changed, face extremely blotchy.  Mr. T.A. came over to where Daniel was sitting.  I couldn't hear him, but he seemed to be encouraging him.  He gave him five, but Daniel was on the edge of the cliff.  Then, as if in slow motion, I could see Mr. T.A. about to pat Daniel on the back.  You know... a "way to go" back slap.  I felt like I was in the Matrix. It all felt slow motion.  I stood up and started yelling, "don't touch him! don't touch him,  DON'T. TOUCH. HIM" then smack. On the back.  Zachary and I recoiled waiting for the back lash.  Daniel's head turned with a jerk, as if to take a giant bite out of his arm as it lay on his back. But he stopped (just) short.  Zachary said, "Oh my God I thought he was going to bite him".  To which I replied, "He was.  But he didn't."  Note to those working with kids with autism, WHEN A CHILD WITH AUTISM IS AT THE EDGE OF THE CLIFF... DON'T TOUCH THEM!!!!  Is that clear enough? 

Then something amazing happened.  Tuesday girl walked into the pool area.  With a huge smile plastered on her face.  (Good girl).  She helped him with his goggles (and he got REALLY in her face) a warning.  His way of saying, "Tuesday girl I'm PISSED".  Then they jumped in.  And did he swim?  Yes he did.  He swam harder and faster than I've EVER seen before.  He did new kicks with the kick board.  He dove for rings in the 10 ft (which he had refused to do with her until this week).  As if he was proving how great he was.  It was incredible.  Then once he looked up at me and waved.  I waved back and he yelled, "MOM, I'M HAPPY AGAIN!" Which is what he always says when he is totally over it.  "ME TOO" I yelled back. 

After, in that same lobby of Jenison Fieldhouse, where an hour before he was on the ground yelling, Tuesday girl asked how our Valentine's was, and he told her about his Valentine from Nora.  To which she said, "I got one from my parents".  In a dejected sort of way.  Maybe next year Tuesday girl.  We said our good byes, and as she was walking away Daniel  yelled out, "next week, BE ON TIME".  I love that kid.

The Good News/Bad News of Comprehension

As I mentioned "comprehension" is taking a front seat in our lives. As it should. I don't really understand if it's because I've been thinking about it and focusing on it, or if it just magically appears before us. But all of a sudden comprehension issues seem to be everywhere. It is "Comprehension's" turn in a long line of things that need to be addressed. With Daniel, it is best to deal with one issue at a time. It's really all he can handle. Math has been the focus, academic wise, for a while now. There came a day where the little light flipped on and some of it started making some sense to him (about 4th grade) and so that day, math became the focus. It could be bike riding, it could be independence, it could be socializing. It could be about 1 million things on any given day.

We had a homework assignment tonight. Very small. He had worked on most of it in academic support. One of the sheets was defining words, telling the part of speech and writing a sentence. A difficult task when you have no idea what a word means. We only had one of these. One was enough. The other sheet was "predicting" also a very difficult if not impossible thing for him. We had two of these words to do. I was explaining a word to him and what it meant and he started SCREAMING and beating himself in the head. Out of nowhere. Left field. For some reason it scared me more than normal and I immediately started crying. Very odd for me. Is it the fact that I am beyond exhausted with the new 6:00 am rising time and recovering from a cold that doesn't seem to want to let go? Is it that today is my 42nd birthday and frankly, MY birthday's aren't my favorite? I'm not afraid of getting old. I welcome it, (it sure beats the alternative?) but I don't know, I've just felt "weird" today. Anyway, my son was beating himself on his head and I was crying. Daniel had no idea what to say to this odd female reaction. I was having a flash back to Mork from Ork, Robin Williams earliest TV gig (now I'm really aging myself) and him watching the girl cry and saying "your eyes are leaking". But really, how many men would know how to deal with my sudden crying? But he did struggle out a "did I scare you?" Very quietly and timidly.

Me: "Yes you did Daniel"

D: "I'm sorry I scared you"

Me: "Daniel, why did you start hitting yourself?"

D: "Because this is hard" he says very calmly.

Me: "Yes, yes it is Daniel". (heart breaking in two)"What's the next word on the list to define Daniel?"

"Forgiveness" he answers.

Sigh. How appropriate.

We had 3 words to discuss and define and explain and this is what happened. He gets so frustrated.

I received a note from his speech teacher the other day. That day Daniel had "participated in the listening comprehension portion of the OWLS (oral and written language scales). In 2007 Daniel scored a 56 (the "normal" standard score range is anywhere from 85 - 115). Yesterday he scored a 63. Good news, he improved. Bad news, he scored a 63. I will be curious to see what some of the other testing reveals. He is up for his three year evaluation. The results of his tests should be interesting, but I don't think it will provide any earth shattering news. We know all of these things, but it may be helpful for the educators to see exactly where he is. Hopefully it will help us figure out ways to better help him so he doesn't keep beating himself in the head? This has been a problem. The hitting himself in the head. It's not very often. But it is disturbing. The good news is he isn't hitting others anymore. The bad news is he will usually hit himself instead. We give him strategies as alternatives. But, you get rid of one behavior and it will always be replaced with something else. You just have to hope the replacement behavior is an improvement over the former one!

The good news is today is another day and his new swimming starts today! The bad news is no cute Nikki instructor. We got a call from the new instructor last night. The new name is Marcus. No cute college girl this semester!

Losing It

I just wanted you all to know that yes, I'm still alive. Barely. I haven't posted much lately, mostly because my life has been turned upside down these last few weeks. No more leisurely days with the children at school all day, allowing me to pace out my to do list in my own time. Instead it is the sprint of the Michigan summer which is always "how much can we squeeze in to these 3 months of gorgeous weather before we are again subjected to 6 months of grey cold?" I feel as though I wait all year for these months and then am always a bit surprised at the radical change that happens with the kids home. I'm not complaining. I really enjoy all the things we get to do together and I am blessed that I get to bring them to our local aquatics center, ride our bikes to the library all the while trying to keep up to the constant demands of food. BUT it is a huge shift for me to not be able to do things at my own pace. I'm still adjusting.

Baseball season is in full swing for Zachary, there has also been a basketball camp for him. Swimming is huge. Our average time in the car increases dramatically with trips both west and east from here. Daniel has been very patient in all of this. Much more so than ever before. We actually sat through the 9 year old baseball game from hell the other day in oppressive heat that went on FOREVER. We had to change fields before the game. All things that spell disaster for Daniel, but he held it together. Honestly a bit better than some of the parents did! I, early on, knew that this was hard for him and whispered in his ear that if he kept it together with no screaming or crying we'd go get ice cream once the madness stopped. This bribe (I like to call it a REWARD) worked brilliantly and he completely complied. I should have whispered something similar to my husband, but not ice cream, because he almost snapped (me too!) by the end of this night. But Daniel, he held strong with the promise of chocolate chip ice cream on a regular cone. It's good to know what your children's buttons are and which ones to push at which times.

We had spent part of a delightful afternoon swimming at our neighbor's house with several people from the 'hood. The next day we were supposed to go swimming at our friends house. We are making the rounds! I started a post about the last time we went to Lisa's but I never finished it. She has an amazing pool and since our first visit there this pool has become the holy mecca for Daniel. He has been obsessed with going back. Yesterday was to be our day. It's been on the calendar. But I had been following the weather and scattered storms had been in the forecast for that day. I continually warned him that it might not work out. Looooooong story short. It didn't work. On the way there (it was cloudy at our house but not storming or raining) we drove into a huge storm. I called her and she called it off. I turned around to go home. Well, all of the waiting, patience, and build up of a few weeks came flying out of his body all at once. He lost it. I haven't witnessed a break down of such amazing force in YEARS. His body was thrashing in the car and frantically grabbing at Zachary is such a mad rush....I'm trying to think of something to compare it to and I can't. I've heard the "all brothers hit each other" but I don't think it is in a mad rage like this. He looked murderous.

I was driving you understand and when he goes after Zachary I lose it. So for all of you who marvel at my ability to stay calm, cool and collected. Here's your pay off. I LOST IT. HUGELY. The times that I have lost it at this level have always been in the car. There is something about my inability to intervene and protect Zachary, Daniel's potential to pummel his head on a window and me not being able to move that is sure to make me snap. Snap I did. I ended up pulling off the road (into a church, which was sort of funny to me, because if you could have seen what was going on in our car juxtaposed against the church, it was nothing if not ironic). I had Zachary move to the 3rd row of seating, out of Daniel's reach (thank goodness he wouldn't ever take off his seat belt while moving) and screamed at Daniel until I got his attention. I then took away all computer for the day. I usually wait until we arrive home to give these sort of crushing punishments but I'm a bit out of practice in these sort of fits. So that made him lose it even more. Not only does he not get to swim at his favorite spot, but he can't even go home to the comfort of his computer. Now I've done it.

Long story long. This went on for THREE HOURS. Yes. Three hours. He was demanding access to the computer. I would not give. There is no excuse for physically attacking someone. Ever. He wanted to know when the new date was to go back to Lisa's. Despite my assurance that we would "at some point" "another day" etc. That wasn't enough. I told him they were going on vacation so we couldn't go. That finally stopped his questions. It took Todd coming home to flip his switch. We ate dinner and I went for some retail therapy. It wasn't frivolous because none of my clothes fit me anymore. So I wasn't exactly thrilled to be looking up a size. Something I haven't had to do in about 15 years. My day was not going well.

But today is a new day. Todd and I have a party to go to tonight. The humidity has broken with the storm somehow making everything seem less oppressive and I'm about to go meet Todd's mom at a half way point between our houses, have lunch and hand the kids over to her for an overnight and swimming at their house. Things are looking up.

Sunday Swim

Daniel started his Sunday swims in the 3rd grade. After a summer of wracking my brain trying to come up with a reward system for him, it finally came to me. The kid loves the water, lets use it. I went through many many scenarios trying to come up with the ideal structure. In 1st and 2nd grade, Daniel was in the intolerable habit of hitting people. 2nd grade was much improved over the 1st grade. But not good enough. The fact that he picked who would be the victim of his physicality made me very suspicious that he did indeed have some control over this impulse. I hear people all the time, "but he's autistic". Phooey. In my opinion he could be taught other ways to get out his aggressions and frustrations. Hence my desperate attempt at a reward system.

The system had to have a pretty immediate feedback. For instance he couldn't wait until the end of the school year to reap his reward. Daily seemed like too much to maintain, so I settled on weekly. This was the deal. Each day that he got through the day without putting his hands on someone he got a star for that day. We have a chart in our laundry room, that is a blank calendar. If he doesn't hit any one he gets a star. If at the end of the week he gets a star for every day of the school week we will take him swimming on the weekend.

When I first proposed this to the school, since I needed their help reporting. I was met with scepticism. They felt that, for instance, if he hit someone on Wednesday and lost his star he would give up for the rest of the week and would turn into some sort of child sized fighting champion trying to get it all in that week. I really didn't think that would be the case and I held my breath and stuck by my proposal. The basis for this is that when he would hit, he would have great remorse. He immediately would crumble and be horrified at his reaction. If there was a bright side to this aggressive side of my beautiful boy, it was that he would only hit the adults at school. Never a child. He had pushed one or two. But this also led to me thinking he could do this. The school agreed that they would write to me in his notebook at the end of every day if he had earned his star. I sat Daniel down with a chart and wrote out that all the stars = swimming that week. The next week we start over and he starts earning another swim. He was very enthusiastic.

Week 1 all stars earned (even getting a brand new para pro at the last second before school started) Go swimming.

Week 2 all stars earned. Go swimming. (Mom is starting to see that she has committed herself to something here that she can NOT go back on but it's working.

Week 3. Note home. Daniel lost his star. He punched his para in the arm. The para reported that he wasn't even mad. He was just sitting there are he hauled off and punched her. I immediately thought, "this is a test, this is only a test, do not fail the test Michelle, stand by your plan". So when he got home, I braced myself for what was to come when I told him there would be no swimming this weekend because he chose to use his hands on someone. The fit that followed was unprecedented. But I held strong. No swimming. AND the days that followed that week he did not go around hitting people because he had already lost out. On the contrary he said, "I can earn my star today!". So the stars were becoming as important as the big reward. Excellent.

After that test run he never hit someone again until the middle of 4th grade. It was a kid this time. And not to be all,"it wasn't my son's fault" but I'm fairly sure, based on who the kid was, he had it coming. Nevertheless, he lost his swimming. Now we are almost finished with 6th grade and he hasn't lost it since then. We found the right mix of ingredients and come up with a whopper of a result.

That is a lot of background for what happened at our Sunday swim yesterday. I had forgotten that a newly formed autism group rented out the pool from 5 - 7 for a fun "get to know you" mixer. Oddly enough Daniel and I did not arrive until 4:00. Much later than usual and because it normally closes at 5:00 Daniel had gotten out and went to shower. It was only after he was in the men's locker room that I remembered what was happening as a few people were coming into the pool area. A boy who is 17 and goes to Daniel's Thursday swim, and has for the 6 years Daniel has been going, was in the pool. I don't think they have ever interacted. This boy, I'll call him Luke.

I told Daniel that I forgot there was this "party" he had been invited too and that if he wanted he could go change back into his swimsuit and swim some more. He said, "I already swam". I knew that would be the answer. I told him that I had to stay for a few minutes anyway because Luke's dad asked me to keep an eye on him. In a few minutes I asked Daniel if he was SURE he was done, because he could go back in. I was so impressed with how he took this, because I know a year ago he would have been very mad at me for even suggesting the change in schedule. He said, "I don't know yet". A few minutes later he said, "Ok I'll go back in". He stood up, went in the locker room and I swear, he was back out in 15 seconds. It was very "Superman going through a revolving door". I brought Daniel over to Luke, who has a very limited vocabulary and doesn't communicate well, and introduced them. Luke said, "Hi Daniel". I suggested they "race" down the slides, because there are two identical ones side by side. And they did it! They'd stand at the top, Luke would count 1, 2, 3 and they'd fly down into the water laughing. Over and over and over, until Daniel said, "I'm tired, I think I'll rest now". Later, they played catch, then shot baskets in the basketball hoop. For an hour the PLAYED together. It was a beautiful interaction for both of them. I was so overjoyed. Then Daniel said, "I think it's time to go home now." Luke made a very very sad face. Daniel said, "I had fun with you, see you on Thursday". And just like that, I think a friendship blossomed between these two boys with autism. Very fitting for the beautiful weekend we had, with flowers and trees budding all around us. I felt like I was watching both of these boys grow, internally, right before my eyes. It was a beautiful beautiful thing.

Darling Nikki

Thursday, when we got to swimming Nikki was waiting for us as usual. The thing that was different is this time SHE HAD A GIFT FOR DANIEL! Yup. My darling Nikki brought Daniel this rubber duck which is now proudly displayed in the grandest of locations on top of his dresser (told ya Amy!)

A rubber duck you ask? At swimming they have a few toys like that here and there. For years I have been trying to get Daniel away from the rubber ducks. It isn't that he sings "Rubber Ducky" ala Ernie from Sesame Street when it's in his hand, or that it is a well, a rubber duck and he's 12. (OK that MIGHT be a small portion of it) it's that he constantly licks the water off of it. It sends chills down my spine to watch him lick that darn duck. I have long ago said, any germ that is out there, Daniel must have built up an immunity to by now. I received more calls in elementary school about Daniel licking this, Daniel drank the water out of the bird feeder, Daniel's eating dirt. What am I supposed to do about it, really? Honestly, after all of these years, the approach of IGNORING it seems to me to be the best self preservation that I have. Because I really don't think that telling him for the 1,359,822 time will help. Will it? Will that one more time make him say. "Oh, I can't lick that, why didn't you say so?" When I'd get the calls, mostly from one very well intentioned, slightly obsessive teacher, I'd uh huh and oh no and I'll talk to him through the whole conversation, only to ignore it. Maybe I'd talk to him and he'd say "I can't do that, it's gross, I won't do it ever again" until the next time. . .

So when my darling Nikki presented him with the duck, part of me said da#!. And the other part, said, that is the sweetest thing ever! She saw a duck that said Michigan State with a hat and a backpack and had to buy it for Daniel. I wish I could pack her up into my backpack and make her live with us FOREVER. Daniel didn't know what to make of it at first and he looked at me and said, "can I take this home?!"

"Yes you can Daniel." He was thrilled.

The OTHER part of my brain was saying, "he will take this out to the pool and THIS will be a problem". Because there was no way in HELL he would let someone else touch that duck. He couldn't very well carry it around for an hour in the pool. He was going to put it down and it was going to get taken and I was proud of myself, because of instead of trying to control the situation I thought, "well, let's see what happens, if nothing else, Nikki, my wonderful Kinesiology student will learn something today." That being, wait until AFTER the lesson and give it to him so no one else lays their hands on HIS duck!

When he had taken MUCH longer than normal to come out of the locker room and I'm in the balcony and Nikki is waiting too on the pool deck for him. I knew the trouble had already started. He finally appeared and his face was all pink and blotchy which means he was already upset. The coloring of his face is a dead giveaway on him. My best guess is he set it down in the locker room to change and immediately someone picked it up to look at it. So far, I'm right on track.

Throughout the whole swim lesson he'd put it down on the side of the pool they'd swim a few laps, come back and not be able to find it. To his credit, he handled it fairly well. He would get stressed but there was no screaming. But Nikki was doing a lot of scrambling around trying to find that duck! It happened over and over. Then they'd find it and he'd be happy. By the end Gail, who runs the program found a ton of ducks and dumped them all in the pool, I assume as a diversion from THE duck so maybe everyone would stop grabbing Daniel's duck.

By the end of the lesson, the duck was in hand, to go home to the dresser, and afterward Nikki met me in the lobby and said, "maybe I should have waited until after?" Lesson learned. I love her. Daniel's happy, Nikki learned something, and I wasn't a control freak and let all the things happen. Everyone was richer for the experience! All in all, it was a great day!

Swimming Update

Daniel did indeed give Nikki a Valentine. He filled it out before we went into swimming. When we walked in he said, "Happy Valentines Day Nikki, I brought you a Valentine." She was so sweet about it as well as completely touched and overwhelmed. Every girl around her all said "ohhhhhhhhhhhh that's so sweet".

After swimming when we were waiting (and waiting and waiting) for Daniel to appear from the locker room we were chatting and she actually said, "I can't believe he remembered my name so fast". My response was only, "yea, well, I'm pretty sure he likes you, a lot, he remembers names of people he likes, a lot." She was so excited. Yup. He's won over yet another girl, in just 2 hours of instruction. He is too sweet. I think it's going to be a great semester.

Valentines Day

Due to the fact that tomorrow is the first day of "winter break", today is the day that both boys have their big Valentine's Day parties. For some reason this has caused quite a stir of anticipation from both of my boys. It is such a flurry of activity for Valentines day. I have been trying to recall if I felt the same way in elementary school and I can't seem to pull up any memories. I know we gave out the tiny folded up valentines to all the kids in the class, but I don't remember a "party". There must have been one, but something makes me think that in these times of commercialism they are a bit more elaborate than the 70's.

Daniel had 54, count 'em, 54 Valentines to address last night. We waited until the night before only because a math test was the day before and I thought that maybe, just maybe, his time would be better spent doing math homework than addressing valentines. I honestly thought he'd never do it all. That is a lot for him. He has a bit of a hard time with his writing. I planned to have him start and then I'd finish them for him. But last night, after we popped the brownies in the oven that he volunteered to bring into the party, we sat down with his list. His class is one of two classes that team teaches. They break into different groups for different areas, and the teachers move fluidly between classes. It's a good set up and, I think, it meets the needs of more of the students. BUT since they work together so often they do parties etc as one. Therefore, 54 Valentines. Daniel sat down and POWERED through them. He wrote the name under To: signed Daniel under "from", checked the name off of his list. I've never seen him so determined! Then he wanted to "decorate" the receptacle for the soon to be delivered valentines. Here he is working diligently:

We had a great time. He was so proud of his work! When he finished he leaned over me, hugged me (a real hug) and said, "I love you mom". Oh my heart just melted typing it. What an incredible blessing to have him able to express that to me.

Zachary, of course, my 9 year old who is a better planner than most adults I know, had his valentines done Monday. In a bag, waiting to be carried out the door, 3 days early. With no prompting from me. On a side note if he and I have one more 10 minute conversation in the morning about the advantages of which coat or combination of coats he should wear to get him through the day, I just may snap. He talks through it, of layering this with that, which gloves would be best, boots/shoes. Clearly the child has too many options. But I digress.

Daniel woke up ready to go today!! I mean what a day, band, parties then SWIMMING. Amazingly, he was telling Todd about swimming with Nikki today. Oh, he remembers her name! Last semester it took him 6 weeks to remember his coaches name and that was with me asking him the whole way there every week, "what's your coaches name? What are you going to say to her?" Then I'd say, "what's her name?" and he'd look at me blankly. Isn't it amazing that he would remember the name of the hot college girl?? My my, isn't the brain interesting? Although I clearly remember Tyson Beckford's name, but not 99% of the people my husband works with. . .

. . . . oh sorry I'm a bit distracted now. Tyson is the only reason that I am eagerly anticipating season 2 of "Make me a Super Model".

I have to say, I have now completely forgotten where I was going with this.

Todd did ask Daniel if Nikki was cute to which he replied "oh yes". We still haven't had that talk. How do you talk to a child about these things when their capacity for understanding is at such a lower level, yet their bodies are obviously developing and responding to puberty? I am at a bit of a loss. If anyone has any advice, I'd be willing to listen.

I think I'll have Daniel give Nikki a valentine. He would enjoy it. I'm sure she would too. I've found that the college students have nostalgia for things like tiny folded valentines with heart shaped suckers attached. They are still close enough to their childhood to remember it better than myself. There are times when I think it is a whole lot of work, forced on us by marketing geniuses thinking of ways to up their February revenue. But now that the work is behind me and I think of Daniel hugging and expressing his love for me, for Zachary taking joy in picking just the right valentine for each classmate, it makes me smile and be thankful. Now if Tyson Beckford would just show up at my door with freshly baked brownies that give you 6 pack abs. . . but that just may be asking for a bit too much.

A New Semester

Yesterday was the beginning of spring semester swim. Daniel started swimming with the MSU Department of Kinesiology when he was six years old. For more information about this program, click here. He is twelve now. I can't believe it's been that long. It's one of those things that becomes a part of your routine and it's just always there.

He loves swimming. LOVES swimming. He learned to swim independently in this class about the 3rd or 4th semester into it. It is set up like a lab for a Kinesiology class. You need to have some sort of disability to be enrolled. It can be physical or otherwise. You get a college student all to yourself. As with any time you are dealing with, ya know, people. That can be a good or a bad thing. If you get a student who is scared out of their mind to be in a pool once a week with a child with a disability, or worse yet, just doesn't want to be there. It might not work out. If you get a student who cannot, cannot stop talking continuously and doesn't know when to back off it may not go well. Or you can get the match made in heaven and have a blissful semester. You never know. But one thing is for sure. Either way both parties, Daniel and his MSU student, will learn a lot.

Each semester I get a bit nervous about who we will "get". Each time we fill out an information sheet to give the new coach "need to know" information. My biggest need to know is always. DON'T TALK TOO MUCH. Stay on point. The language overwhelms him and he'll get frustrated not understanding you. He appears to understand and doesn't always. For people who chit chat all the time, this can be hard. And since the switch to girls being his coaches, this has been more of a challenge. Please don't complain to me that that is sexist. I have done my own personal study over six years and girls talk more. It's a fact. And since he has learned to independently navigate the locker room, he has been getting girls assigned to him.

The MSU students are supposed to call you ahead of time and ask questions and introduce themselves. This is something that the girls excel at compared to the guys. Most guys have completely ignored this part of the procedure. They seem to have some sort of aversion to the phone. Maybe college guys just don't call people?! That would explain a lot. But I digress. Our "girl" this semester is Nikki. She called on Tuesday to say hi. Sweet girl. Really sweet. But as soon as she said "hi". I cringed. She has a really high squeaky voice. Voices can really get under Daniel's skin. We chatted. She seemed good. She's a senior, graduating in May. Kinesiology major. It's all good. She asked if she should call Daniel directly. We've been working on phone skills, so I said ok, call back at 5:00. Which she did. Put another mark in the positive column under "does what she says she'll do". I also wanted to see if Daniel would go right through the ceiling talking to her. He did not. That was good. But I was still worried.

I had thought about it, for a few days, then on Thursday, which is Daniel's swim day, I said to my husband. "I'm really worried about this, I hope her voice doesn't irritate him". Then something I thought I'd never say, "I really hope she's a cute girl, then it won't matter." Which sounds awful right? But truth be told, he is in puberty. Last semester his coach was perfectly "nice" (and you know what that means when you're described as nice), but one day she couldn't swim and a different girl took over who was gorgeous. I've never seen him so excited! It was way too funny. It took me by surprise at the time. But on hour in the pool with a gorgeous college student, he thought he'd struck gold!

Thursday came, we went to swimming. When we walked in the professor had her list, saw Daniel and called out for Nikki. She stepped forward and said "hi Daniel nice to meet you!" Daniel YELLED out very enthusiastically, "Hi Nikki I'm so excited to swim with you!" Yup, she's a cutie. Thank goodness!

He spent the hour singing, playing, doing laps, by the end, he was touching her arm and giggling. Hmmm. Looks like we need to have some conversations this semester?

'Tis the Season

I have been thinking about something for 3 days now. I would like to preface this with, I am not saying this to congratulate myself. I just think it is sort of strange. Strange in a wonderful and positive way. Strange in a way that makes me feel good, so I want to tell other people. Strange in a way that makes me want to tell others so that they know there are good people out there.

I will also say that we live in a wonderful community. A community that cares about people. A fairly bleeding heart community, yes. We are right across the street from a major university and with that brings a certain "kind" of person. But here I am going to use kind in the descriptive way, of just being kind. I talk to many families who have children with disabilities. Sometimes I don't even know them and they call me looking for help and advice. I always listen. I try to help the best I can. I'm sort of a bleeding heart myself and I want to help everyone. I feel I've gathered a lot of knowledge of autism and of working "the system". I have been very successful with our school system and feel we have a great working relationship. I'm nice, yet firm and I really don't take any shit. But in a very perky and upbeat way! (Most of the time) Daniel has thrived. He is doing well. I want more. But I am happy with his progress.

What I often find talking to these other families is that everyone has stories about strangers. Strangers who have yelled at them to control their children. Strangers who tell them they are "doing it wrong". Really awful situations that break my heart. I think one of the challenging things about a child with autism is that they, to the untrained eye, look "normal", whatever that means, but they don't act that way. They have meltdowns. They are way behind developmentally and therefore don't live up to people's expectations. Then for some crazy ass reason, strangers feel compelled to tell you what they think you are doing wrong. I know I know. This is not something that happens only to families with autism. But I'm saying, it seems to happen more often and with a lot more, ahem, gusto from the people giving the advice. I hear it all the time.

Now you are probably thinking I'm going to tell a story about some crazy person who confronted me. Well I'm not. I'm here to say that THIS HAS NEVER HAPPENED TO ME. Never. Don't get me wrong, I'm sure people think things on occasion. But no one has ever said anything but positive things to me. I don't know if they are unsure what my reaction would be? If they somehow sense I'd give them a piece of my mind right back (in a perky upbeat way of course) or what it is. The reason I bring this up is it happened again on Sunday. I was bringing Daniel to his usual Sunday swim at our local community center. Our Sunday swim is his reward for doing a good job during the previous week at school. In over 3 years he has missed twice. Twice that he acted in an aggressive manner and lost his privilege. Amazing. So we are checking in on Sunday. I always bring a book and sit in the bleachers and read. The man at the desk asked me what I was reading. He does this whenever he sees I've moved on to a different book. Our time at the counter was longer because I was due to buy a different pass. I told him I'm reading "Ray". It's about an autistic savant, who is blind, and a musical genius. My friend is the president of a publishing company and sent it to me. (It's wonderful by the way). The man at the counter commented on the book. I told Daniel he could head to the locker room to change. When Daniel left I said, "You know, Daniel is autistic too." He said, "really? I wouldn't have known that. He does really well. It's because he has such great parents." I mean what a totally unnecessary and kind thing to say! This guy sees either my husband or myself bring in Daniel every week to swim and has been observing us for a long time now. What a way to make someones day.

A few months ago I was walking home after walking Daniel to school. A neighbor drove by and stopped her car and yelled out the window, "you are a wonderful mother." Again. There was no reason for that. Kindness. I honestly have many stories like this. But the one that sticks out to me the most was when Daniel was, I'd say 5. That puts Zachary at 2. We were in the post office. I don't remember the circumstances, but I knew Daniel was wearing thin. I abandoned ship and started to hustle them both out. Daniel lost it before we got to the door and I was DRAGGING him out of there. He made his legs go to spaghetti and wouldn't walk. At 5 he was BIG and I was dragging him to the car and trying to avoid kicks, punches and head butts while he is screaming at the TOP of his lungs. I was sweating and struggling, while trying to keep my 2 year old close to me and not running into the parking lot! I was on the verge of tears, seeing that van across the lot and trying to get him there. Everyone is staring. At this point I'm just trying to get out. A man was walking into the post office and looked at me. We made eye contact and I thought, here it comes. You know what he said? He said, "you are doing a great job, hang in there." and just kept walking. I was dumbfounded. And I will never EVER forget it. Those words gave me the strength to get across the lot and get everyone strapped into their seats. (while still avoiding punches and head butts and kicks) I think about those words on hard days. A stranger. A kind stranger, who impacted my life by saying one sentence to me. Who locked eyes with me in a way that told me it would be o.k. He did it not for himself, but for me, because he knew I needed it at that moment.

I try to pass on the kindness when I see people in stores with their 3 year old screaming. To people when they call me, a stranger, out of nowhere. Next time you see someone having a "moment". Don't judge them. Encourage them. You just might be that person they never forget. 'Tis the season for love, joy and kindness. Let's spread it throughout the year.