Follow the Leader

This week is a rare week for our family.  Rare because we have nothing going on.  At all.  It is the one week in between sports for my 13 year old and Daniel even has his week off of Sports Skills because it is MSU's spring break.  Every day they have come home from school, which is strange in and of itself because they weren't getting home until 5:30 most days.  I've felt like we have been just eying each other like we should all be doing something else and feeling like we are late for something that we are not.  Instead of being nice, it's just felt....weird.  We are so used to jumping into the car and getting to the next place, we don't know what to do when it isn't part of the plan.  The good news (?) is it will start again next week.

During this lack of doing anything I read an email from our local Mid Michigan Autism Association.  In it they were advertising the once a month drum circle they have been sponsoring for going on 3 years.  Yes, 3 years and we had never tried it.  Since we had nothing else going on, I decided this was the week!  So I jumped into it (after thinking about it for 3 years). 

I first called my friend who is on the board for this group.  The drum circle is her thing, so I wanted to get a little bit of information about it before I presented it to Daniel.  Because that is what I have to do, lay it out for him so he knows what to expect.  I also wanted to check if her son was going to be there because I knew that would be a BIG draw for Daniel.  They have become friends.  Yes, you heard me.  I think I can genuinely say that they are friends.  They are both on the spectrum and he is two years older than Daniel but they really compliment each other well.  They know when the other is feeling overwhelmed and give each other space.  And since I had been in my blogging hiatus they have 1. gone to a train show together, 2. bowl together every other Saturday 3. had a play date of sorts at their house and built train tracks, 4. went to dinner and a high school football game together.  Now that I write that out, that is pretty substantial and cool!  Yay for us!  Shhhh, don't tell anyone, I don't want to jinx it, but I have hopes of them living together some day.....it's a secret though....

Back to drum circle.  Once I got confirmation the friend would indeed be there, and information about it which included the phrase, "it's really loose and easy" which in no way felt like anything that would be good for either Daniel or for myself, I decided what the heck, we have nothing else going on.  We might as well try it.  Then I ran into a friend at the grocery store who's daughter has been several times.  I mentioned drum circle to her.  She said "as long as Daniel doesn't mind loud noise it will be great".  Ummmmm well that sounds exactly wrong for us!  Let's go for it!  All of these reasons are exactly why we hadn't been in three years. 

So I brought it up to Daniel, told him where it was, which is super close to our house, and he is familiar with it.  One positive.  Because if he didn't know where it was I would be questioned about where exactly it was, how long it would take to get there, when we would leave and he would route it out in his head to make sure we in no way had to pass a Belle Tire.  Phew, we were safe. 

The time came and off we went. . . . . and no one else was there.  Yet.  We chatted with "Don" the leader.  There were all sorts of drums from around the world in the middle of the recital room at a local music store.  Also a table full of interesting percussion  instruments.  Slowly more people arrived and Daniel knew every kid there.  I was getting optimistic about the whole thing when we started.  We started by doing a sort of relaxation, mediation exercise, which was feeling good to me when Daniel started whispering "what are we doing?" "do we have to keep our eyes closed?"  I said no you don't.....and he started exhaling loudly at each exhale which was a clue to me that he was not happy with this part.  Then we all picked out shakers.  Daniel said "no thanks".  And I thought oh crap, he is not going to be into this but yay me he said "no thank you".  As the person was walking away with the shakers he spied a purple one in the sack and said "OH PURPLE" and he called her back.  She found him another purple and we were set.  Two purple shakers.  Excellent for us. 

Then leader Don said we would play a follow the leader with music.  That whomever was the leader could dance around and use their shakers and guide the whole group, just groove however you want.  And in that moment my head switched from worrying about Daniel to realizing how much I would NOT want to the leader.  Ever.  And that a group of people following me in an exercise like this is pretty much my worst nightmare and that I am anything but a free and loose dancer who jams in their own way and I started to have a mini panic attack.  I mean, if Don chose me, I couldn't say no because that would be a terrible example for Daniel, but what would I do (besides look terribly awkward and pray for it to be over?) so I went into the middle school student mode of praying silently that I would not be picked first and tried to make myself invisible even though I was sitting right across from Don.  Then Don picked Daniel and I'll admit part of me was like "phew it's not me!" And the other part was like "crap he picked Daniel who has never been here and has no idea how this works!" I said "Daniel, do you want to lead the group?" and he said YES!  And we all were shaking our shakers and Daniel was shaking away and spinning in circles and jumping up and down (stop jumping Daniel jumping is not good for me anymore...) and he was having a great time!   (and everyone was watching him and not me!) and on it went. He was great. He was having fun, and he loves when everyone watches him!  AND other kids who don't like to lead, eventually led after Daniel's good example AND I never had to! 

We were there for an hour.  About 30 minutes into it Daniel looked at his watch and I thought, "yes Daniel I'm about done too."  It is loud.  But he made it the whole hour (and so did I) and I tried to pretend that grooving and being loose was my thing.  I wish it were sometimes, but it's not, but I'll do it for him, and pretend it is.  It was a success.  A total success.   So much so, that I think we'll try again next month!  But maybe I'll see if Todd wants to bring him next month.  You know, just so he can see what it's like.  Not because I'm afraid of being the leader or anything. 

Swim Season

It's been so long.  I have felt like I have had no time for writing.  Maybe I just haven't "needed" too.  Because that is what it comes down to.  Blogging about our lives has kept me sane. (ish)  Maybe I just haven't needed to feel sane.  Maybe I've been "too busy" (the most over used phrase in these United States).  Whatever it is, I have been gone.  I think I originally came on here to say how far Daniel has come this year.  But has he really?  It's all about perspective actually.  For Daniel, yes he has grown immensely.  In comparison to other 16 year olds (yes, he has turned 16 since I last wrote. SIXTEEN) not so much.  The small things are so huge for us.  Things that I know parents of "typical" kids don't even notice happening because it evolves so organically.  At some point they stop and say "wow when did that happen?" but they don't notice it at the time.  At least I don't think they do.  My only comparison is that I also have a typical 13 year old.  Maybe I just handle things differently with him because Daniel is his older brother?  I don't know.

So what has happened?  We have just completed another swim season.  Daniel swims with his high school team.  It is the BEST thing for him.  He gets tons of exercise which not only helps keep him in shape but it helps his mind.  A lot.  I can feel adulthood creeping up on us.  The questions of what Daniel will do and where he will be are starting to loom over me.  I don't have these answers.  I have some vague ideas as I tend to do with him.  Plans are pliable.  They are ever evolving, but a small part of that picture in my mind sees Daniel as an adult and that whatever job he is doing, part of his weekly schedule will include swimming.  Always.  3 times a week?  more?  Who knows.  But I picture him swimming after work to relax and get his exercise similar to the way he used to come home from his special needs preschool program and walk immediately up the stairs where I would run a shallow bath and he would lay in the water with it just covering his ears.  He would lay there and decompress in the water. Water has always been a way for him to relax. However he could work swimming into his life it would be a way to center himself.

One thing is clear.  He needs access to a pool.  While he certainly doesn't compete at the level of his team mates, he competes, and I know that is huge.  He had a good season, he improved, got faster.  He went to some away meets, which he didn't do last year.  He had "fans" come to watch him, which he loved.  A lot.  He always feels like he is the winner, even when he is the last one.  Wouldn't that be great? At the league meet, when his name was announced, he stepped up on the starting block and waved to the crowd, both arms high in the air, like he was competing in the Olympics waving and cheering for himself.  I was on the pool deck with his team, on the other side of the pool, my eyes filling with tears, knowing he feels so good about himself, watching him wave to the crowd then glancing over to our parents section and watching them cheer for HIM.  In that moment I not only felt so incredibly proud of him, but for us.  That we made that happen, that we gave him that moment, by going outside of our comfort zone and giving him the space to accomplish that.

I watched him at the same (long) meet, take off his I pod half way through and hand it to me to put it away.  No earphones while on a pool deck with what, 10 swim teams?  + coaches, + 500 fans, refs with whistles and announcers over a loud speaker.  He just took them out and passed it to the side and said, "I'm done with this now".  He wouldn't leave his seat previously, unless he was going to swim even though I was encouraging him to go with his teammates to cheer on other teammates at the end of their lane.  I tried again.  I could see that his posture was different.  Maybe not.  Maybe I could feel his relaxation amongst that chaos and I asked him if he likes when people cheer for him, he said "yes" of course, I said, "well maybe you should return the favor and cheer for them." He then got up to go cheer for his friend and biggest cheerleader on the team, Adam.  We were there for almost 4 hours.

The next day a parent that I barely know emailed me.  It was one of the greatest things I have received, complimenting Daniel and all he has done.  Amazed at his coping ability and how far he has come.  It's wonderful when something like that comes out of left field and helps you see your child through someone else's eyes.  Come to think of it throwing his arms up in the air like he is in the Olympics might just be appropriate for what he has accomplished. 

Saving Yourself

I realize that I tend to write about our seemingly miraculous (to me) progressions on this blog.  While this is a wonderful way for me to document Daniel's progress, it is not very helpful for those people who want true to life information about autism.  It isn't all wonderful leaps forward.  Those of you who know us well, know that.  I do tend to focus on the positive.  It is what I need to do.  It helps me stay positive.  It helps me have a brighter outlook.  It isn't all about me, however, and I would be remiss if I didn't occasionally give an example of painful (to me) stories.  A dear friend of mine who has similar struggles to mine posted on my facebook something like, "you have had an incredible summer of wonderful firsts for Daniel!"  This is not what she said at all, but it is the spirit of the comment.  While that is certainly true, I continue to have a black cloud in my memory of this summer and I am hoping if I write about it, that black cloud will move on and out of here.

One of Daniel's favorite things to do is to go watch fireworks.  This seems strange since they consist of loud booming sounds and he does not like loud surprising sounds...the only way I can rationalize this is that the visual stimulation waaaayyyy out weighs the loudness.  He cheers and claps and yells out comments to the fireworks.  You can't help but be happy about that!  My favorite is when he shouts "BRAVO!  MAGNIFIQUE!" It's funny.  I endure fireworks for him.  I actually hate them.  For about the first 30 seconds I think "that's pretty", but then I'm done.  I don't know why but them make me super uncomfortable.  They have for as long as I remember.  I get twitchy and want to bolt.  Especially the stadium fireworks that are SO loud and so close.  We recently watched those on our northern trip and I am the one covering my ears and cringing.  I am fearful someone will get killed from them.  I know.  Super uplifting right?  I can't help it. Every ounce of my being is saying leave! Run! Get out of here!

So this brings me to 4th of July week in Michigan.  Our state government made the call to legalize all fireworks.  You know, the kind that people shoot into the air and explode.  The shooting off kind had been illegal here until now.  In the government's infinite wisdom they thought they would capitalize on the sales and it would bring money to our state.  Some people (very few) used to drive to Indiana to purchase these fireworks.  But now they are available to all!  Lucky us!  (sarcasm font).  All this really did was open them to everyone in the world and they were exploding all night all summer long.

Daniel always looks forward to the fireworks booths appearing in the parking lots of local super stores.  We usually buy a package, but until this year those included only the legal fireworks that you light and they stay on the ground and throw out pretty sparks. Sometimes they made loud whistling noises.  For the most part these are pretty safe and  I would still make my kids stay back a ridiculously safe distance.  Sometimes behind windows. I know, my husband thinks I'm nuts too.  I am not a super crazy safety person, but as I've said, they freak me out. 

This year the package we bought (when I say we I mean my husband Todd and Daniel) included the new legal shoot them into the sky and they blow up kind.  This did not make me happy.  We took them north with us (because in Michigan everyone goes "up north" all summer.  That is what is said, you don't say where, just "up north".  If you have ever been to northern Michigan in the summer you know why, if not you have to go there and see for yourself.)  Michigan's summer has also been drought ridden.  Seriously no rain.  Leaving everything dry and ready for a fire.  Fire also freaks me out.  Blogging is so self reflective, I am realizing I have a LOT of issues! :)  Anyway, knowing how crazy I am about all of these things we decided to bring our fireworks down to the beach.  Away from people, away from dry grasses and trees.  We decided we'd shoot them off by the water, actually out TOWARD the lake (Lake Michigan, so no small lake) and then the fiery part would fall down to the water and nothing would catch on fire.  We brought a bucket to fill with water to put our extinguished fireworks into so nothing is hot.  We did everything right.  A group of us set off for the beach, including neighbors. 

Daniel and I sat on a blanket, the kids were skipping rocks in the water waiting and watching the gorgeous sunset over Lake Michigan (you really should visit if you haven't).  It was lovely.  Once the sun went down Todd starting setting them off, shooting over the lake. My insides started to cringe and feel uncomfortable.  I always just brace for it to be over, with a smile on my face.  Daniel was happy and enjoying the show.  Todd was saving the bigger ones for the end like usual, you have to have a finale right?  Then it all started to go very wrong. Todd put the big box in the sand, aimed over the lake.  It had not just one that shot up and out but many in succession, eight in a row? more?  I'm not sure.  He lit it and it shot out and up, but the force of the first shot made the base of the firework flip over in the sand, not toward the lake but inland. Toward us.  It shot like a missle across the sand, low to the ground.  Everyone else was way off in a different direction, but I laid down on the blanket, thinking "stay low" like it was gun fire (which it sort of felt like), I told Daniel to lay down thinking it would keep shooting above us, but he didn't lay down.  He didn't understand what was happening and it was all happening very very fast.   For someone who processes slowly, this is not good. He was still watching the show like nothing was wrong. I didn't move because I wasn't sure where to move to.  Things were shooting off in all crazy directions.  Then one shot right at me.  I literally rolled out of the way and the firework skipped off our blanket landing right behind it.  I was relieved for a split second until I realized it would start shooting fireworks in a second (everyone else thought it hit me it was so close) I started crawling away as fast as I could and yelled for Daniel to come.  I kept crawling and didn't realize he was still sitting there.  My neighbor and friend started screaming for Daniel to move.  I don't even remember much of this, but he must have moved finally but he was yelling "why"? I think she ran and grabbed him?  And in the midst of exploding fireworks all around us I realized that he had NO understanding of having to save himself.  Part of me knew that he doesn't understand danger like we do, but seeing him sitting there with fireworks shooting around us and going off right by him and he just. doesn't. move. and wants to enjoy the show was so painful.  While this was all going on in slow motion another one shot off and was a bit higher. High enough that it went up the beach to the beach grass.  Oh yes, on top of it all, it hit the beach grass which immediately started on fire.  Todd then took a chance and ran up and kicked the still going off fireworks into the water and thankfully he wasn't hurt.  Our neighbor ran up to the grass and started throwing sand on it.  Todd grabbed the bucket of water and ran up the beach and doused the fire with water on top of the sand.  Then it was over. 

We all took a breath and gathered our stuff and walked home from the beach.  Talking about how lucky we were that no one was hurt.  Thankful.  I was a big ball of nerves and all I could think about was that Daniel didn't try to help himself.  In fact, as he always does, he refused to move.  Even with fiery projectiles coming at him.  He wouldn't move.  If he had been sitting where I had been he wouldn't have moved and it would have hit him.  My blanket has a burn mark in it where I had been sitting well actually laying at that moment.  The fact that he was 4 inches to my right made it not hit DANIEL then start blowing up.  I was shaking so badly and this realization, while part of me knew it, but seeing it, changed many situations for me.  We are working on his independence and pushing him into the world, but he doesn't have any concept that dangerous things are out there nor does he understand to move when it happens.  That. is. scary.  That changes everything. 

On the way home Daniel was talking about how we would finish the rest tomorrow.  In my head I was screaming NO WE WON'T!  WE WILL NEVER DO THAT AGAIN.  I was partially upset with myself, because I knew we shouldn't do it.  I didn't want to and I knew my husband would tell me I was being silly.  I didn't want to have anything to do with it and I didn't listen to my gut.  But really I knew I wouldn't have won and I should at least be there just in case. 

Once the neighbors quietly went home, and we walked into our house, Zachary sat down (who had been safely out of the way the whole time thank goodness) Daniel went upstairs to get ready for bed and I looked at Zachary and said, "I just want you to know we are never, ever doing that again."  He just nodded.  Todd was trying to downplay it still, and I know this is just so I won't go into a tailspin, but it was too late.  I was long gone into one.  It just wasn't showing on the outside yet.  I was keeping it together in front of all of these people.  Once we went upstairs I cried.  And then I cried some more.  I cried because of the close call we all had physically.  I also cried with the reality of Daniel not saving himself.  I cried because even after the fact he had no idea that anything bad had happened. 

I told Todd I didn't blame him.  We really did everything right.  We had precautions in place.  It was a freak accident.  It happens.  I guess to our State government I would like say this was a really bone headed thing to legalize these fireworks.  No amount of revenue is worth the injuries that have happened and will happen in the future.  I don't even think the state will get that much more revenue, but it doesn't matter.  Accidents happen.  You can do everything right and they still happen.  I also know you can't live in fear, but you also can just not be stupid. 

So among all of Daniel's huge steps forward this summer, getting a vaccination, doing a flip turn in the pool for the first time, talking about "that tire guy" without freaking out.  Amongst over coming THOSE huge FEARS, he has no fear of fiery projectile explosives coming toward him and he doesn't understand it.  And this is something that is really really hard to deal with, but a reality that I need to take into consideration from this day forward.  It is my dark cloud over this summer.  It still makes me cry when I think about it.  Although I am so very thankful that no one was hurt. 

I have of course talked to Daniel about the danger.  I know he doesn't really understand it.  When we were headed north a few weeks later he said to Todd, "we didn't finish our fireworks, can we do the rest?"  Todd told him no we couldn't and Daniel said, "because it's dangerous?" and Todd said yes and that the rest are gone, he soaked them in water and threw them away.  So that is the end.  Daniel is saying they are dangerous, but we know, he doesn't really understand that.  As a parent that reality is very hard to live with.

It was Easy!

It's been a big week here!  Just the other day I wrote about Daniel's progress with his biggest fear.  Then yesterday came along and I thought, which one is Daniel's biggest fear?  I can't say for him, but let's say if he was in the book Divergent these two things would be in his fear simulation! (I love that book!) 

Yesterday we went to the pediatrician.  Daniel has fallen into a pretty decent routine there, mostly because they have been very accommodating and let him opt out of the dreaded finger poke and frankly, all of his shots for the past 12, yes 12 years.  When we were in the office yesterday and the nurse looked back to his last vaccinations and I heard his last one was in the year 2000, I just thought, of course it was!  I hadn't thought much about it, but there it was in front of me 2000.

So many things happened in the year 2000.  Besides the obviously new century and all, my wonderful son Zach was born in January.  That was a fantastic way to start a new year and century.  Later that year, we moved back to East Lansing.  No small thing with a newborn and a 3 year old who was very perplexing and spent a lot of his time screaming and crying, much to my confusion.  I was excited to move back to East Lansing and get back to our original pediatrician, the one we had after Daniel was born.  I wasn't getting any answers from our Dr's in the Detroit area and I was frustrated.  I had a new baby and I was finally ready to "hear" the answers.  So yes, when we got back here, our pediatrician was the first (and it's unusual for this to happen) to say "he's autistic".  With all of the changes that were happening, during this first visit Daniel screamed the ENTIRE time he was in the office.  It was a huge change that at the time, I had no understanding how upsetting that would be for him. I didn't understand (yet) how big of a problem that change would be for him.   I hadn't put together until yesterday that he had never gotten a shot in THIS office.  That first trip to the pediatrician screaming set a long standing precedent.  Which brings me back to the fact that he has not gotten a vaccination in 12 years.  That is NOT because of the vaccination groups who say it is what causes autism.  I take the same stand as A Diary of a Mom, when I say, while I have nothing but respect for those who think this caused their child's autism. They have every right to their own feelings.  Nor can I have any say in THEIR journey.  We have all traveled down different paths.  Every single child with autism is different.  I know of a few people that I have heard their stories personally that it does seem like a vaccination contributed.  In my opinion, there are many different factors that contribute to autism. 

There, I got THAT out of the way.  BUT I will say that if I had a baby today....I would choose to vaccinate, but carefully.  And by that I mean, one vaccination at a time.  I would not allow three or four at a time.  Ever.  I have learned along parenting journey that we as parents have the last say about everything and one of the people who taught me that is our pediatrician.  I adore him.  We have had very intelligent conversations about vaccines.  He has not been comfortable with Daniel being so far behind, and really, neither have my husband and I.  But I remember one talk with my pediatrician and I said, "I am not against it, we just can't do it now.  If we hold him down and inject him, he will never come in your office again.  He may destroy it in a fit, and if he has an ear infection he won't trust us.  Ever. Again".  And he understood that.  We both agreed him having access to medical care was more important at the time than a vaccine.  He respected my opinion and for that I will always be grateful.   Not all kids with autism are the same (I'll say it again) this is just DANIEL.  So I waited.  I waited until I felt he was ready.  I waited for him to understand.  And over the last year I have seen things change.  We got a puppy and I told Daniel the PUPPY got vaccinations.  Daniel was shocked.  He said "Oscar did?".  I took every opportunity to have a calm discussion.  Usually it would end with Daniel saying "I will NOT get a shot".  But I could see his wheels turning. 

People will tell you they HAVE to have these shots for school.  It is not true.  You can get around it.  I have.  For years, and it's not that difficult. 

This all prefaces that yesterday my boys had pediatrician well visits.  I purposely scheduled them together.  At the same time.  This was a bit overwhelming.  I am becoming less successful at juggling many things at once, so trying to talk to the nurse, fill out paperwork, help Daniel answer questions, and keep him calm and trying to give equal attention to Zachary was challenging for me.  I do feel a bit guilty that I was exposing Zachary to yet another challenging situation and using him as a guinea pig.  But I have to say, I couldn't have done it without him.  I hope he understands.  I hope he doesn't hold it against me. 

I walked into the appointment and told the nurse we were going to try to give Daniel one vaccination today. I won't go into detail but there was some back and forth with the nurse.  She doesn't know him.  I do.   I have mastered the art of conveying this in a polite yet firm way.  I know how to work Daniel.  I told Daniel before we left our house he was getting a vaccine.  This spiked his distress. But I have to be up front with him.  He has to trust me about all else.  He began protesting.  Yelling.  I will probably get judged for this, but I gave him a Valium.  I had one left.  Our Dr. gave me two back when Daniel needed a tooth pulled.  I used one then and kept the other for a special occasion.  That being yesterday.  I could tell as we were walking in to the office it kicked in.  He got giggly and started singing.  Zachary smiled at me.  But before you judge, the Valium relieved DANIEL's stress level.  It helped make him not so terrified.  Not completely, but it took the edge off a little bit.  He was still mad at me and protesting.  But it was manageable.  When it came down to it and to make a very long story (shorter) Zachary got a vaccination first.  I pulled Daniel over to watch it.  The nurse said to Zach "think of a happy place".  and in an animated voice, totally for Daniel's benefit Zachary said, "I'm going to think of the beach, it is my happy place, I love the water it is so relaxing" (GOD I LOVE THAT KID!) and the nurse stuck him and Daniel said "that's it?".  Zachary said, "that's it, it is SO EASY!!!!!"  

The nurse left the room and Daniel sat down.  She brought in another tray.  We decided on the Meningococcal vaccine because 1. it's required. and 2. it doesn't hurt for days like tetanus does. and 3. the MMR still scares me as he is allergic to eggs.  Daniel figured it out immediately and started escalating (keep in mind he is 6'1" and 219 pounds.  A tantrum is HARD to deal with!)  I walked up to him and trying to get him to hear me over the "nononononononononononono" yelling from him.  He came down enough and I said, "what is your happy place?" he answered "the circus (?)" He continued to protest and I said we were doing it.  I was sure he could.  We started taking about the circus, I was holding his arms firmly but not pinned.  The nurse was worried about him grabbing her and I don't blame her.  Daniel upset can be SCARY due to his size.  I told him she was wiping his skin and he was upset and boom. It was over. 

He said.  "That's all?  That was so easy."  And here he is. 

All he said all day.  "it was so easy!"  I know my child.  I knew he was ready.  I also knew that once he did one, he would calm down and realize it wasn't what he thought it was.  I knew that it had to be done in a not so traumatic circumstance so he could process it and not remember the trauma around it.  So yet another door is opened.  Nancy our nurse was fabulous.  She offered that if we come into walk in immunization times to ask for her and she would help.  She followed my lead and respected what I knew would work.  Now Daniel is a little more protected then yesterday which makes me feel good.  He also has learned a bit more.  He learned that he could do it.  He learned again, most importantly, that I was not misleading him.  That what I said was absolutely true.  That his brother is there for him, always.  That we can guide him through a difficult time and he can trust us and rely on us.  That even though it wasn't easy.  It will (probably) be from now on.  He learned that his could do it, and that opens up the door to so many other things.  Next to that Belle Tire guy, he conquered his next most overwhelming fear. 

Last night we went out for ice cream (which I promised him after he did it) and we clinked our ice cream together in celebration of a job well done.  

Band Concert

I am having a hard time starting this blog today. It is only because I have so much going around in my head I don't know where to start.  So I'm starting by saying I don't know where to start..hoping the keys will take me in the right direction.  I guess I'll start with the word START.  Here in Michigan START stands for the STatewise Autism Resources and Training.  It is a huge grant through Grand Valley State University.  I have been to many many START trainings.  It isn't usually parents, but all of those people on your team out there working with your child. I  like to know what they are learning and what they are supposed to be doing, so I go too.  It is also very helpful for me to improve how I parent.  It isn't meant for that, but I have gotten a LOT out of it. 

Last fall I attended a LINKS training.  Here is a bit of an explanation of what it is.  And what it is, is actually a Godsend.  Truly.  It is simple in concept, but not in procedure.  It is also the most win-win in education that I have ever seen.  A truly win-win situation doesn't come up very often.  The kids on the spectrum obviously get a ton out of it, but the amazing thing is so do the General Ed kids who are "linked" up with them.  It is so simple in concept it is genius.  Hearing Maureen Ziegler talk about it in training is mesmerizing.  Truly. Her stories of how LINKS came to be are so interesting I could listen to them ALL day long.  I hope you follow the link (ha ha) and read up a bit.  '

In January Daniel's high school got this program in it's initial stages.  Daniel has 5 LINKS with him every day.  It didn't work out schedule wise for him to have one first hour, but he does 2nd through 6th.  He has a different general ed student with him each hour. They sign up for a LINKS class, do on line work but in place of going to a class they go to DANIEL's class with him.  This does NOT take the place of a para pro.  Repeat, does NOT.  They are there for socializing and modeling.  See, kids listen to kids.  Not adults.  Adults can't act like kids.  They can't teach kids how to be kids.  They especially (we have found) can't model to a kid with ASD how to act like a teenager.  This has been modeled all over our great state with astounding results.  The Gen ed kids get as much or more out of it than the ASD kids.  And the better part? When you start getting kids to be LINKS who are struggling themselves? THEY turn around.  They know they have to come to school because this ASD kid is relying on THEM.  They have a purpose.  Their grades improve.  It isn't just for NHS (National Honors Society) kids.  It's a miracle.

So throughout this semester these LINKS have been with Daniel.  I have heard reports of Daniel branching out and being much more social at school.  He comes home excited about "making friends".  When we went to the musical 3 of his LINKS were cast members.  We went again.  We bought the DVD.  They saw him in the audience and RAN through the crowd to find him and thank him, truly from the bottom of their heart, for coming.  They met with Todd and I at school and asked us questions.  We answered honestly.  We also told them his ability to ask questions has dramatically increased since they have been with him.  It decreases outbursts and behaviors.  If he gets angry he recovers quicker.  It's amazing.  Have I said that?  So this leads me up to last night....

Daniel had a band concert.  He is always excited about dressing up.  He wears a tux.  He thinks he looks pretty darn good....and he does. Daniel is doing well.  I brought him back stage before the concert.  I talked to a student teacher and asked if Daniel would be OK back there on his own and he said, sure no problem.  I dropped him off and went and sat in the auditorium and waited like all of the other parents.  I didn't wait backstage with him.  He's fine, they said, and he was.  Todd, Zachary and I were in the audience waiting for the concert to begin and Todd leaned over and said "are you nervous or worried at all?"  I honestly answered, "no, I'm not".  He said, "me either".  "So this is what it feels like?" I thought.  I have never experienced this feeling of true calm before a concert that Daniel was involved in.  There is always a level of anxiety.  How incredible!!!  It's not just him making progress!! 

Then, when one of his LINKS walked up to our seats and greeted us with her wonderful smile.  She excused how she looked as she just rushed over from dance practice.  She said one of the LINKS blogged about the concert (they all communicate through a private blog so they can discuss things that come up with their student and problem solve together and share information. They can all be on the same page all the time).  We chatted then she sat down.  Daniel's group was getting on stage.  It was perfect timing.  I sat back in my chair thinking she has no idea what she just did for me.  She took time out of her nutty senior schedule to come to this concert. Sure she probably had lots of friends performing, but I was thinking about how happy Daniel would be to see her after.  I settled in for the absolutely amazing concert.  These kids are something else!  We are so lucky to have such a strongly supported music program in these tough economic times. 

After the concert Daniel was sitting with his group in the audience.  He was on the aisle.  As he was standing up, juggling his huge baritone and his music three, yes three of his LINKS (the same three who happened to be in the musical) ran down the aisle toward him.  Their enthusiasm was bubbling over and they were complementing him, congratulating him and telling him how dapper he is in his tux.  Generally making a big fuss about his awesomeness.  They took pictures as a group with him.  I stood off to the side holding his baritone with emotions I can't even explain to you.  When we all finally dispersed Zach looked at me and just said "wow, that was amazing, what great kids".  I could only nod my head as I was choking back tears. 

On the ride home Daniel was chatting about how great he was (totally true) and I couldn't speak.  I was so choked up.  I knew if I talked I would cry and he would think I was sad and I wouldn't be able to explain that mom's cry when they are happy too.  So I just drove home acting like this is like every other day.  When it wasn't.  It was something I'll never forget.  When you spend your life pretty isolated, even though kids like Daniel, they are nice to him and include him, things like this don't happen.  Until now. 

Eating Out

A Diary of a Mom shared a link today that I had to pass on http://adiaryofamom.wordpress.com/2012/04/16/changing-lives/.  It really hit home for me because I hear about these run ins with ignorant people quite often.  I also have talked about that I have never ever had anyone confront my family in this way.  I have only had people say encouraging things to me.  I am not sure why I have lucked out in this way, but I have.  I'm sure some people thought about it, but have never confronted me.  I am thankful for that, because I honestly don't know what I'd do.  I don't mean I would retreat.  I think I would probably start a fight!  There is nothing worse than getting mama bear riled up!  

Part of the reason I'm sharing this is because Saturday night  my family went out to eat.  If you aren't from here, I'll try to describe this place for you.  It is called Crunchy's.  It has been in our area forever.  When I was in college I spent a LOT of time here.  Sort of like Cheers but not as nice, it's friendly, but a bit more dive like, which only lends itself to the appeal in my opinion.  Burgers, beer, pizza and lots and lots of TVs.  We haven't been going there for long because the fear of the "Belle Tire guy" had kept us away.  Now we usually don't go if the Detroit Tigers or Redwings are playing because Belle Tire is their sponsor and therefore more Belle Tire commercials.  But Saturday night we were going out to dinner...well, because we had to.  There were no options at home.  I thought Olga's was on the table and somehow Crunchy's was decided.  I knew the Tiger's were on but that was the decision.  We warned Daniel.  He has improved so much that now he just looks away and hides when the little evil guy comes on the TV so we thought we'd give it a whirl.  He's still scared, but he is dealing with it.  How awesome is that!?

Crunchy's was crazy busy and we lucked out with a  booth.  Daniel likes that they have a pinball machine there, so he gets a bunch of quarters and plays.  This is an excellent distraction while waiting for food!  Service was a little slower than normal because of how busy it was, but the pinball helps. 

Our server came to our table, and I'm going to say his name, Brandon, because he handled this so well....Brandon walked up to our table and right when he did, the Belle Tire guy came on the TV behind him.  Of course Brandon had no idea this was happening or that it would ever affect my 6' tall child.  But Daniel looked like someone smacked him the way he jumped and then he ducked.  He had his head down as far as he could, about level with the booth and looking toward the wall next to us and then Daniel says super casually,  "hi Brandon" (in what I could tell was a voice he was trying to control) "I'd like a burger that's totally plain, no cheese, no toppings and fries and a Sprite." All while looking under the table.  Brandon was completely unfazed and said "no problem!  sounds good!" like they were looking at each other talking and this happens every day. Todd and I were both smiling and the rest went on like "normal".  The waiter never blinked.  If anything, he was nicer.  Just like the people in this video. 

Autism awareness is working.  People are understanding that he isn't being rude, that something is a little "off" and here's the best part THEY DON'T CARE.  As this What Would You Do? shows, people not only don't care but stand up to the jerk who does.  This made my day, but it also made me cry.  Cry because I was so over come with how many people were angry and jumped in to their defense. 

It also reminded me of vacation.  Zach and I were eating out alone.  At first I didn't notice the boy next to me, but as we were looking at our menus I saw him start walking back and forth. He had an I Touch.  I heard a bit of "face" from Nick Jr and it reminded me of Daniel.  Then I glanced at my phone and as soon as I did he was looking over my shoulder (literally) at my I phone.  I put it down and he walked away.  His parents didn't notice.  Zach and I smiled at each other, both knowing immediately what was up.  Then I started to pay more attention out of the corner of my eye.  He was pacing, snapping his fingers compulsively and looking at his I touch with full attention.  Then I picked up my phone again and within a split second he was over my shoulder again.  This time his mom saw him and she called him back and apologized in a way that I have done many times.  They were getting ready to leave as she was apologizing.  I smiled and said, "really, it's not a problem" and they left.  Little did they know, how much I understood.  In my case autism awareness is because I live with it at home.  But I have to think part of it has been the relentless autism awareness campaigns over the past 10 years.   But it is also, sadly, due to the new statistic released this month.  1 in 88 kids are diagnosed with autism. I'll say that again, 1 in 88.  So I have to think pretty much everyone knows someone diagnosed with autism.  A friend, a nephew, a grandchild, a neighbor.  We still don't know why this is happening, but I am happy to know that people are being more accepting of it.  April is autism awareness month.  Pay it forward and let someone know they are accepted in our community.  Watch the video to remind yourself how to respond to support families with autism. 


http://abcnews.go.com/WhatWouldYouDo/video/autistic-child-defended-cafe-family-at-dinner-man-criticizes-wwyd-16136829

Better Late than Never

It is still February so I feel justified posting this.  Daniel made this at school in ELF one day.  ELF is an acronym for a social friend group that he participates in every other week.  He brought the card home and was SO genuinely excited about it.  I can see why.  It is about the cutest thing I've ever seen. 

If case you were wondering the blue lines are glittery and Daniel said it is "flashing"

The inside reads, "Dear Mom and Dad, I love you in London, I Love you in Rome, Look in your mailbox when you get home. xoxox Your secret admirer

It also says Be My Valentine.

Anyone know what that poem is from?? Because it is of course "from" something and not original. 

One of his favorites.  Arthur's Valentine. 

I think it is about the best Valentine I have ever received.  

Last night was the preliminary round of the district swim meet.  I was gearing up for a long night, as we were told to be there at 4:00, it started at 6:00 and was expected to go until about 9:30.  I am usually an extreme rule follower, but I knew immediately I wasn't bringing him at 4:00.  Daniel had a little bit different idea and was ready at about 4:10 and waiting in the car, so my 4:30 plan was out the window.  When he's ready, he's ready.  I can't tell you how many times I've wondered where he is when we were leaving somewhere only to find him sitting in the car wondering what is taking us so long!

When Daniel and I walked through the door of the natatorium Daniel stopped and said "there's a LOT of people in here", which I had been warning him about.  There were 8 entire swim teams, coaches, timers etc.  Everyone wasn't even there yet and there was no spectators yet, since it was ya know, 4:30. I will admit it.  I was nervous.  I wasn't sure we would make it through this night and I was struggling because I know that no matter how upset he is, he won't leave somewhere if it isn't over.  Even if he is so angry, self injuring, freaking out, he is dug in even more.  Let's just say my gut was speaking to me and I had a bad feeling before we got there.  I looked at the line up and saw besides the 50 free and 100 free, the coach put him in a relay.  I always struggle with relays because I feel like Daniel's slow swimming slows down the others on the relay, I have come to realize that mostly they just care about there personal time within the relay, because it isn't the super competitive group anyway, but this is the districts and I had a bad feeling.  So I asked the coach to scratch him and put in someone else, which he agreed to.  Daniel seemed fine with the fact that he only had two races instead of his usual 3. 

I brought his usual old I pod nano with his Fantasia music.  The boy loves "Toccata and fugue in D minor by Johann Sebastian Bach" (which is what he says when asked what he is listening to or loves, but this time, knowing it would run out of battery in that time brought his I pod touch.  I love the I pods, for a teenage boy to have an I pod in his ear looks like everyone else, he can listen to calming music and block out the chaos around him.  It is a perfect solution.  A team mate last night asked what he was listening to, and this was his answer....THAT is not the typical! :) 

The warm up was so chaotic I just decided not to have him get in.  We are talking 15 or 20 people per lane, my husband described it that it looked like the start of a triathlon.  Does Daniel REALLY need to warm up with his times? Um....no.  I was mentally checking off my list of things we are getting through and I skipped that, check.  No relay, check.  OK, moving on!

The meet starts.  I bought a program.  I'm a numbers girl and I kind of like to write down everyone's times. It gives me something to do for hours and I can see exactly how everyone is doing.  I remind myself of the baseball mom keeping stats, but whatever. I find it fun and relaxing. It's kind of weird, but it keeps me busy.

I found that Daniel really liked having the program next to him. It was a typed visual schedule, and he understood more about these times that we have been talking about. He could see peoples seed time (there best time coming in) and what they actually swam.  He could see then why people were excited when they obliterated their time, or upset when they didn't.  Some connections were being made. 

Then at the beginning of the 3rd event, boys were standing next to the starting blocks getting ready and it happened.  What is possibly the worst thing to happen for an autistic person?  What is the huge fear our kids walk around with?  A random, loud, interrupting moment that stops the flow of what is going on, makes loud noises and flashes?  Yup.  The fire alarm went off.  The buzzers start, they flash and we have to evacuate the building.  A stand PACKED full of fans. Eight teams of swimmers in speedos, swim caps, half with no shoes on.  All outside. 

Daniel was SO upset.  His usual cues, bright red face, worried eyes, pleading for it to stop.  Begging me to make it stop (oh how I wish I could make it stop my sweet!  I would turn it off and protect you, but I can't.  It is gut wrenching). And from my perspective I have to put on my cheer leading face that it is all good, it will stop soon.  The coach distributed kick boards for all of the shoeless kids outside to stand on, Daniel had on slides, thankfully, but a short sleeved shirt and a swimsuit.  This not warming up was looking good because he was DRY.  What made me keep him out of that warm up? He's never done that before?  I was now thankful.  Although he wasn't complaining about being cold.  He wanted that fire alarm to stop.  The other kids were jumping up and down and freezing and laughing about the insanity of the situation and Daniel just. wanted. it. to. stop.  Go back to what we should doing.  He kept pleading for the kids to get back in the pool. "I just want them to swim"  "I want to swim".  "Make it stop so we can get back in the pool."  There is not greater feeling of defeat as a parent of a kid with autism when you can't control the situation.  It is totally out of your hands and you are in 100% damage control. 

The buzzers stop, but the lights were still flashing and we filed inside.  It started again.  "OH NO!" Daniel starts perseverating again.  He says "I'M GOING TO GRAB YOU AND GET IN YOUR FACE". To which I respond that he is NOT.  This has actually been a good strategy, because he is on the brink of doing it and warning me he is almost there.  I can sometimes stop it.  He did once.  He doesn't hurt me and it doesn't even really scare me, he pulls me toward him and touches our faces together in a super intense feeling that he may hit you, but he doesn't.  It may look like it to the casual observer. But I know he is begging for control and to lash out, but isn't.  I could go on and on, but let's cut to the chase. They finally let us in the building. The alarm was not blaring or buzzing, but the lights were flashing.  Someone (who I hope gets found and in a LOT of trouble) obviously messed with a sprinkler head in the band room (the sprinklers were going off in there and I hope didn't cause too much damage).  It took just over one HOUR to fix it.  The law is you can't go into the pool while the lights are flashing.  They couldn't get it to stop because of the the damaged sprinkler head in the band room.  Seriously our worst nightmare.  Every so often Daniel would yell out for the flashing to stop.  He was still very upset. I could see the natives getting restless at one point and finally talked him into going to the bathroom and I found Todd to help him so he wouldn't freak in the bathroom with out me to help.  (This also gave me a small break of talking him down the whole time, my own self preservation strategy!)  So our extremely long meet now had an extra hour added on to it. 

When it stopped the relief on Daniel's face was instantaneous.  He was so excited for it to stop, he looked like he could run a marathon he had so much energy. He was revitalized.  His first race was only a few heats away.  His coach called him down and he jumped in off the block (still no diving) and swam hard.  He is so strong, if we could fix a few things he'd actually be somewhat competitive.  But he took 3 seconds off of his best ever time!  I was so proud and he was SO excited.  Everyone was so excited for him!  His next up was his 100 free and he took 3.5 seconds off of THAT.  It was awesome.  He was so excited.  As always he announced that he WON!  Which he doesn't literally win his heat, but he wins in so many other ways.  I was tearing up sitting there, thinking about him able to sit through an hour long fire alarm. People approached me saying how great he did and "was he even upset"?  I don't know how they can't see that, but obviously he is only making a scene that we can see. Todd was across the pool and heard him a few times yelling out, but our parental radar is hearing it and others aren't paying too much attention. His team mates knew he was upset but understood.  They were happy for him when it was over.  The fact that he regrouped from that and used his energy in a positive way is, frankly, better than a few of his team mates did.  One or two let it get to them. 

It was the longest night.  We got home at 11:00 pm after enduring huge stress.  Daniel got to bed at midnight after his normal routine.  Slept until 11:30 this morning and we are ready to go again.  He is the most amazing person I know.  Today are the finals and we are just going to be a part of the team and cheer them on.  We have dinner out with the team. Usually I'd be nervous about that.  But honestly, right now. I feel like we could do anything.  If we can get through that, we can get through anything.  I choose to see the positives.  I think most people learn the best lessons through the hardest circumstances and I think it is even more true with our kids with autism.  I refuse to react why me.  I actually can't even do it.  I am so happy with what happened last night, I'm looking forward to facing it again today.

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!?! 

Happy New Year; Two Years in the Making

Happy 2012!   I hope this finds your families healthy and happy after the holiday season.  We decided to go "low key" this New Years.  We stayed home.  It's been a busy break with swim practices, so instead of packing up and going somewhere we thought we needed some down time before school started again. 

New Years Eve found us hanging out, playing cards and waiting for the ball to drop.  Daniel was also waiting, although ready to leap into bed after we counted down.  His favorite part is counting backwards from 10 of course.  It is oh so very very Sesame Street!  At about 11:45 he wandered downstairs, already showered and in his pajamas waiting for "the" moment.  He brought his I pad with him while he waited in the family room.  Todd and I were playing cards with our friends when we heard the TV go silent.  We both turned around to look into the family room and then we saw "it".  For those of you who know us, or have read this blog for a long time, you know what "it" is.  "It", like Voldemort, is the thing that cannot be named, said, talked about, make a reference to, anything.  The Belle Tire commercial was on during The New Years Rockin' Eve "with Dick Clark" hosted by Ryan Seacrest (I don't know why that makes me laugh...Dick Clark, please please retire.) 

But for those of you who aren't familiar with our years and years (and years) of dealing with "The Belle Tire guy", here are some old posts for you to read.  Here  I think that should pull up all of them.  I reread a lot of these last night.  Realizing that for the past two years we have been actively working on helping Daniel past this fear.  Really, it's been his whole life, but the past two years he seems to have matured enough to work harder on it.  He is still terrified by the little demon.  This seemingly innocuous little guy has really pissed me off for a long time.  Only because he paralyzes my child and prevents us from going to a lot of places for fear that he will suddenly appear on a screen somewhere.  I have written about "Sensory Perceptual Issues in Autism and Aspergers".  But as a reminder, it explains that "perceptual thinkers can experience thought as a reality. It means that when they think about something, they relive it visually, auditorially, etc and emotionally." (ONeill 1999).  If you have ever seen Daniel react to this guy you'd know he was reliving a nightmare over and over again. 

One of my followers became someone who worked for Belle Tire, because I wrote about them so much, I guess they had to know who this blogger was who kept talking about them.  They feel bad.  They've even written to me, which is nice, but also kind of funny.  But what can they do?  I only wish they could do something.

So back to NYE.  Silence.  Todd and I looked at each other, with that non verbal communication that only 20+ years of marriage can give you.  Todd jumped up and went into the room (we can see the TV from where we were, but not Daniel).  Daniel was looking at his I pad, with kind of a scrunched up look on his face, looking off to the side.  Kind of like when you see something really disgusting and don't quite want to look at it...  Then when it was over, it was over although he was a little upset.  He muted it and looked away.  That's what he did.  What he DIDN'T DO was: yell, cover his ears, run from the room.  None of it. None of the typical for him fight or flight, over the top panic. He simply picked up the remote and hit that powerful little button "mute", averted his eyes and waited for it to be over.  For two years, when we go into restaurants with TVs (that are muted) we have told him "it's safe,  it's on mute", he won't hear "it's" voice and he can look away when it's done.  For over two years.  It has allowed us to slowly go to more places.  He gets a little anxious, but he's been doing it with some underlying panic.  Then on NYE, this happened.  The couple who were with us, both know very well, about his problems with this. We all looked at each other in astonishment.  I'm so glad they knew how BIG, HUGE, ENORMOUS, this was for him and were able to celebrate that with us.  We didn't have a lot of time to do that, because it was time for the countdown.  We had poppers with confetti (yup, loud, but we warned him, and he was fine with it and happy to pull one himself). We counted down, we kissed and hugged and welcomed 2012 together.  With maybe just a little more enthusiasm that we had planned on because Daniel made a huge leap forward that night.  I think confetti and celebration were a perfect way to follow up this growth.  That is why we are always working on things.  It took over two years, and we saw a change right before our eyes.  I'm hoping this is a sign of things to come.  Happy New Year from the Sneathens!

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.

A Day in the Life

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

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

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

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

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

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

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

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

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

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

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