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.

Autism and Church Part II

Saturday night we told the boys we'd be attending the 10:30 service the next day.  Everyone was on board.  We were careful to explain to Daniel that he would not be hanging out in the Youth Parlor, we'd be in the sanctuary.  On these first trips anywhere you have to be so very careful.  Whatever you do, he will want to do each and every time.  If we had allowed him to play pinball, by gosh he'd be doing that every single time.  It is nearly impossible to change.  That is one reason why we waited until this day to go.  They have had some other special weeks of Youth Sunday etc. but it hasn't been the "standard" service.  We wanted his first church experience to be what it would look like MOST of the time. 

All went well most of the morning.  When we got to the church and the parking lot was full the anxiety set in for him.  I could see him start to stress.  He got rigid and irritated.  Todd dropped us off and set off in search of a parking spot.  This also caused him great stress.  But we have determined through other experiences it is better than Daniel driving around and looking.  We waited on a bench outside while Daniel perseverated about when dad would come and where he was.  I was on high alert because of Daniel's stress level.  He just didn't know what was coming and frankly, neither did I.  We sat on the bench on the mild November day while people continued to walk into the church.  With every opening of the door he got more stressed waiting for Todd and listening to the very loud screech of the door.  Daniel commented that it "definitely needed oil".  I agreed but was continuing to put on my happy face while Zachary paced off to the side. I could see how upset Zach was getting.   I'm sure he was thinking what a terrible idea this was and he was preparing himself for embarrassment and disaster.  I have to say.  So was I.

When we finally saw Todd striding across the parking lot toward us I think we all let out the breath we were holding.  We looked at where Zachary would be going for Sunday school and sent him off.  That was one thing I was relieved about.  If Daniel did scream and break down, Zachary would be far away in the Youth Parlor for Sunday School and wouldn't have to witness it. 

We entered the sanctuary and positioned ourselves near the back at the end.  Ready for a quick exit to the Friendship Hall if necessary.  We were given programs which we started to look thorough.  The program!!!  What a wonderful thing!  For those of you with kids on the autism spectrum the program is essentially a visual schedule!!!  It showed all of the things that would happen, in order.  Something for us to point out where we are in the schedule thus helping him determine what is left to get through.  This was good.  This was very good.

Then a woman took a seat in front of us with an adorable little girl.  Probably 1 1/2 or 2 years old.  Todd and I looked at each other, with Daniel in the middle of us.  We both immediately knew what the other was thinking.  "This will never work".  He would be watching that little girl wiggle and want to leave and the mom would be doing  whatever would need to be done to keep her there, which is fine,  but that won't work for Daniel to see the whole time. He would be very irritated and would only focus on her.  The next thing we simultaneously thought was "how do we get him to move?" Because once he has a spot.  He doesn't move without a fight.  I said, "Hey let's go say hi to Mrs. Spicer, I saw her come in!"  He loves her and was willing to get up and do this.  Then I threw in, then we'll sit in a different spot.  We said our hello's and moved to the other side of the back, hoping another mom wouldn't have the same big idea to be close for a quick exit like the rest of us.  This also gave us a view of the bell choir and we used that as our excuse to move, "Look, now we can see them play the bells!"  He seemed suspicious, but went along with it.  I love those parenting moments when Todd and I are on the exact same page and with a look and not a word, go into the same mode!

Soon after the bells started playing and I could see his body relax.  The music would be the saving grace.   The church has a new pastor whom I have heard a lot about. He is young, he is kind of cool and I've heard nothing but fabulous things about him.  As soon as he spoke, I watched a smile form on Daniel's face.  He was everything I'd heard about and more.  He is engaging, funny and makes you feel like he is talking to you.  My confidence was building. 

We heard from the Book of Ruth and of Gleaning.  I was enjoying the stories.  He relates them so well to his life and ours.  And as Daniel would start to get antsy the choir would sing, or we would have a hymn to sing and he would stand and sing along with the words in his sweet clear singing voice and it would break up the mood.   I was really starting to feel confident.

I desperately wanted to know what time it was.  I finally asked Daniel, who always has his watch on,  and he said 11:05.  Darn, just over half done.  I knew it was a risk to ask, because it could set him off if it was too long before it was over, but my curiousity was getting the best of me.  Then what happened next, was not what I was expecting.  Daniel was sitting there quietly and a huge smile came over his face.  Then it started.  The giggles.  He had the giggles.  Big time.  He was trying SO hard.  Covering his mouth, trying to be quiet.  As it goes with the giggles, they are contagious.  I couldn't help it either.  I looked at Todd and we both were smiling and giggling ourselves.  It eventually subsided.  I don't remember what it was that broke it. Probably because I love when he gets the giggles.  It is infectious and it makes me happy to see him happy. 

At one point I heard Pastor Andrew talk about a discussion he had with some people of the church.  I must have missed the beginning of this and been watching Daniel, but I snapped to attention when he mentioned that a person on a committee was talking about the expense of installing a handicapped door and if the large amount of money should be spent on it.  The discussion was saying that they don't really have anyone at the church who needs that (as a man was at the end of our row in a wheelchair?).  I am a bit confused on what Pastor Andrew said in relation to this and I'm sure someone else who was there can clear it up for me, but my mind immediately shifted to a story I heard once at a training.  I still don't know if this story happened or if it was metaphorical, but it stuck with me and applied so perfectly to this discussion that I missed part of it.  It was this:

on a very wintery day when the children arrived to school the paths were still not cleared for the kids.  The custodian was working feverishly to get it cleared and safe for the kids.  Shoveling and salting and laboring, sweating under the pressure that the kids were arriving.  The children wanted to get into the building on this very chilly day and were asking when he would be finished with his work.  The custodian was working and working to clear the steps to the school when a girl in a wheelchair asked if he would clear the ramp first.  The custodian said no, if I clear these steps more of the kids can enter this way, you will have to wait since there is just one of you.  To which the little girl replied, "but if you clear the ramp first, we can ALL enter that way". 

I love that story.  People often wonder why you accommodate for that for one person.  The lesson obviously being that if you make it accessible for that one, you are actually clearing the way for everyone.  If you have a door that not only one can enter through, but all can enter through, you make your church open to everyone.  Maybe you don't have as many people at the church who need it, but maybe they don't feel like it is handicapped accessible enough?  Maybe people are being left home and excluded because of it. 

This story always affects me so much.  Autism, while not the same as being in a wheelchair and physically excluded from a place, is a very isolating thing.  My mind went back to 1st grade and I was waiting at the school to go on a field trip with Daniel.  There was a large group of moms waiting to do the same.  They of course all knew each other and everyone was asking this and that.  It struck me at that time that I didn't know one parent there.  I had missed on all the play dates, the phone calls, the chatting at the park and at the school.  I was just working to get my child TO the school every day.  You don't get invited to as many places, if anywhere at all.  You don't fit in.  It is lonely. 

Because of this, I know when families are excluded from their church too,  is very difficult. For the families who attended church and were asked to leave that is a terrible thing.  Then there are some of us who just don't put themselves out there and avoid being excluded as a self protection.   It seems it should be the place that welcomes you with open arms, no matter WHAT.  It is a community.  A safe haven.  And with that I heard Pastor Andrew say something about the church being a place "inviting all people".  That is how it ended.  On the first day that we were there. They ended talking about inclusion.  We said the Lord's Prayer which was written in the program and Daniel read along with everyone else, something I learned on those Sundays at the Catholic church and recite every day to myself and we sang another hymn.  Then it was over. One hour, successfully completed.  Our first day in church.  I didn't get a chance to talk to Todd about it after.  He was leaving town and we went into that mode.  But I felt so happy and content all day that we had accomplished that.  That Daniel had enjoyed it.  That the message was about inclusion in the end.