Saturday, March 9, 2013

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'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. 

Thursday, March 7, 2013

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. 

Monday, August 6, 2012

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.

Friday, July 13, 2012

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.  

Wednesday, July 11, 2012

An (In)Ordinary Summer Day

Happy July!  The summer is flying by like it always does! I feel like we are in our routine. We are continuing with swimming club and started the second session. The days of summer are feeling like our ordinary day.

We'll be missing a week of swimming as we head back "up north" for a week, but I am compensating by Daniel swimming 4 days for the three weeks he is swimming instead of 3 days a week.  He was VERY unhappy with me about this, but is doing it.  I believe I heard him muttering something about "dumb" under his breath which I pretended to NOT hear.  This has been happening more and more and it is very difficult for me not to smile as he is basically calling me dumb or stupid (which in his vocabulary is a VERY bad word to say, the worst he has in his repertoire).  The reason it makes me happy is because it is NORMAL for a teenager to think their parents are stupid!  Only the parent of a special needs child is thrilled to see their kids cheat at a game the first time or call us stupid.   It's PROGRESS!!!  Normally I'll act offended and tell him that is NOT OK and make him apologize all while thinking "hurray"!!  I have to stick to the script! 

Yesterday Daniel went to swimming, Zach is in Jr. Lifeguard and loving it.  What else is better for a 100% rule follower than Jr Lifeguard?  He gets to blow a whistle at people and tell them to follow the RULES!  And people have to listen.  Plus he gets to swim, and learn to save people.  That all has little brother Zach written all OVER it.  He is still wearing his whistle, 3 hours after class.  Oh boy.  He did tell me that he can work at the pool when he is 14, in two years.  Not as a lifeguard, but doing other things.  I think you have to be 16 to lifeguard and be certified etc.  Of course he will be by then. He is formulating his plan.  I love that kid.

In the afternoon we were lucky enough to get in for haircuts, which were desperately needed.  Haircuts used to be so traumatic for all of us.  Daniel would cry and scream and fight.  I would do it at home and it would take hours.  Sometimes Todd would hold him down and we'd buzz him.  It was awful.  But he also HATED his hair long, he didn't like when it would blow in the wind almost like it hurt his scalp.  Damned if you do, damned if you don't.  I don't remember how old he was when my friend and hairdresser Kari suggested she try.  She was magical with him.  It wasn't perfect in the beginning, but over time he trusted her, and she even got to where she uses the clippers to clean up the bottom and sides.  Now I get to go in and watch him chat with her, script his haircutting script from Elmo's World and it is so easy.  I never thought it would be easy.  She was a savior.  Shhhh, don't tell her, but I'd pay her A LOT more money than I do, just so I don't have to do it! 

On the way out of haircuts I took a different route because we were meeting my husband for dinner.  A few blocks from the salon I remembered this route took us past the new Belle Tire store.  I have many links to the nightmare that this little logo has brought to us.  We were driving along and Daniel said, "when we get to the store of the tire guy, I will duck my head and close my eyes and smile" (a reference to the Veggie Tales song "God is Bigger than the Boogie man")  I froze.  He has never referred to this without being in a panic or covering his ears.  He just said it like he was talking about ice cream.  From the backseat Zach said "WHAT did you just say?" hardly believing it himself.  Then Daniel covered his ears.  I then launched into my speech (delivered in the most light hearted voice I could) "you don't have to be afraid, it's a LOGO Daniel.  A LOGO.  It cannot hurt you."  My same speech I've been giving for years and years.  But he is reacting less and less to it.  It is obviously working.  He said "the tire guy" without reacting.  He is avoiding him on his own.  I'm not changing my route to avoid passing the store.  It's working.  Slowly, yes.  What isn't slow with us?  But it's working.  We take and celebrate ALL progress.  This is opening his world a tiny bit more.

Then we went to Bed Bath and Beyond.  Daniel has a laundry hamper from when he was about 6.  It is in the shape of a rocket because his room was, and still is, space themed.  He went through a space phase.  Had I known then that I would NEVER be allowed to change his room, I might have done a few things differently.  Live and learn, right?  Well this laundry hamper is one huge mess.  There are wires sticking out all over and it is just destroyed.  I finally said, "that's it, we need a new one." He asked "is it tattered and worn?" (from Sesame Street, "I love Trash" song) and I said (according to script) "it is and we need a new one." He has learned to accept this.  It used to be a HUGE fight.  So we were looking for a laundry hamper and we were in the bed area on the way to the bath area. Daniel said excitedly, "LOOK A PURPLE PILLOW!".  There was a bed with a purple pillow on it that you use to sit up in bed to read or whatever.  I jokingly said, "Daniel is it time to change your room, we could use purple."  I say jokingly, because I didn't think there was a chance in hell he'd let me change his entire room!  And he said "YES, let's change my room and get rid of my rockets on the wall and paint over them!".  I almost fell over onto the floor of Bed Bath and Beyond.   He ASKED for a CHANGE in the most important place in our house to him.  a. He ASKED (in his own way) and b. he is ready for a change and somewhat communicated it to me.  So now, in the middle of summer, I am trying to design a new room for him that is masculine, and has purple and of course he wants it done now.  Not a project I was planning on, in the middle of our busy summer, but one I'm thrilled to do.  But I'm going to make thoughtful choices.  After all, he might not ever let me change it again. 

It's these little moments of progress in the middle of an ordinary day that make you feel that all of the hard work matters. It gives you a moment of celebration.  It gives you something to hold onto when things aren't going well.  It keeps us moving forward.