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. 

Thursday, June 21, 2012

Wow, Luther!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, May 18, 2012

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. 

Monday, May 14, 2012

Happy Mother's Day

 Happy Mothers Day!  Being a mom is one of the most special things in the world.  When Daniel was born a month early there were many complications and we spent the first 3 to 4 of his life separated from him by glass.  He was hooked up to so many machines and drips but when we would sit by him everything would regulate, his breathing, his heart rate, his oxygen levels.  Despite the glass between us he could hear our voices and we could put our hands through to touch his little body but he was protected from us due to his very vulnerable system. The power of parenthood was shown immediately for us.  The fact that your mere presence can have that effect on a baby is mind boggling.   The first time I was able to hold him and we were alone, I made a promise to him. I whispered in his ear that I would always be there for him.  That I would protect him no matter what.  That I would stand up for him and fight for him, as he was fighting in those first precious days.  I didn't know then what was in our future.  I didn't know how much of my life would be spent fighting for him and being his voice and his advocate.  But I think there is was a little part of me, now that I look back, that felt like the fight wasn't just in those first days at the hospital.  I feel like part of me knew it was always going to be more difficult with Daniel.  And it is.  But it isn't.  The rewards are grand.  The love is exponential.  I love both of my kids with all of my heart.  It is just different because they are different.  Zachary is the kindest soul and I love and appreciate everything about him. I can't believe some days how lucky I am that Zachary is my child.   My heart fills with pride and love for him, as it does for Daniel, but it is different.  Not more or less. 

Yesterday we didn't go to any fancy brunches.  That isn't really something we can do.  It was quiet around here with just our family of four.  My mother in law was with my husband's family enjoying their day.  I always spend a portion of my day, missing my mom and remembering the last mothers day we spent together, just days before she died at the too young age of 45, the age I will be this September.  I can't believe it has been 19 years since that day changed my life forever.  Because of these things I feel like I really appreciate how precious motherhood is.  It is the greatest gift in the world.  Yesterday I was surprised with a card from Daniel that he made at school, with his Link (a general ed peer).  It was a huge surpise for me because usually he doesn't keep a surprise.  He'll tell you he has a gift or a surpise because he can't keep it in.  He is bursting with excitement.  But this time he quietly told Todd that he had a something for me and he kept it quiet until Mothers Day when he gave it to me.  Here it is. I just had to share. It is just about the best present ever.  The flowers on front are cut out and glued on.

This is the inside of the card. It is a picture of me, of course.  In case you are wondering those are flowers on my shirt..... :) I wasn't sure at first... There is a tree, a star, a smiley face and a watering can for my flowers.

This page says, if you can't read it, "Dear mom, You are kind.  I can give you three loving kisses on cheeks and nose (this is a quote from a book.  Gotta love that echoalia)  I can thank you for making toast and bacon for breakfast in the morning.  And do you know what?  I love you!!"
The pictures are three pieces of toast and three pieces of bacon.  Precisely what he eats every morning.  An icecream cone, because who doesn't love that?!.   I think it is about the best card I've ever received.  I hope you all had a mother's day filled with love too.

Wednesday, May 9, 2012

Changing Times

Today I am writing this post especially for all of the people out there with smaller children who have autism.  It is unbelievable to me (and such a cliche) to say I don't know where the time has gone.  Daniel is 15 and finishing his freshman year of high school.  It seems like yesterday that he was in first grade and struggling to just stay in a classroom.  He was like a little Tasmanian devil going through the hallways, half the time crying or screaming and unable to say what was so upsetting.  He'd have to go to a room with his para just to calm down and be in a safe place for himself.  If you took the wrong route to school he'd cry for an hour, frustrated that his day was "wrong". He was toilet trained but I'd hold my breath daily hoping there weren't any issues that happened with that at school.  I was so frustrated trying to convince staff of the potential in Daniel, not to just see the screaming, frustrated little boy.  Hoping to keep him in the classroom as much as possible so that he could learn from his peers. 

Now he is wrapping up his first year of high school. My 5'10" tall self has to look up at my baby and he has to lean down for me to kiss him on the cheek.  He is a happy happy boy. He loves to go to school and can't wait to see all of his "friends".  He navigates the insane hallways of the high school, moving through the wall of teens on the way to his next class.  He is finishing his Algebra 1/2 class with an A and looking to Algebra 3/4 next year.  He is finishing his 5th year of band.  People laughed in 4th grade when I said he wanted to be in band.  He plays the baritone. 

Changing routines is still not easy.  It takes consistency and diligence.  But once he adapts a new routine with the improvement in it, he has it forever, until you try to change it again.  Last summer I worked most of the summer to get him to make his own lunch.  He, of course, eats the same thing every day.  Spreading the peanut butter on the bread was difficult for him, so when I say it took all summer of me holding him hand over hand (remember from OT?) showing him the angle of the butter knife, then him doing it on his own.  Then doing the same while cutting it diagonally (of course) in half.  Now he makes his lunch every day that he is home, on the weekends or day off from school. 

We are beginning the process of adult transition and filling out 10 pages of questions asking what Daniel can and cannot do, this is my simplification of the process.  It's a painful process for parents and one I did through Community Mental Health last year while applying for respite money for camp (which I didn't qualify for due to salary, not due to Daniel's lack of disability.  He more than qualified, the family did not).  It is very hard not to focus on how far behind he still is.  But I try.  So I focused on something else.  One of the questions was about making meals.  I happily had a "partial" with the lunch.  Todd and I chuckled about the question if he can "prepare 3 simple meals" because he doesn't eat 3 whole different dinners.  But it did make me think that I could teach him to cook a hamburger.  His staple main dish.  This is of course the point of the process. To figure out what you could work on to help him toward independence.  But as a parent it doesn't always feel that way.

Last night I finished the sloppy joes for the rest of us (it just sounded GOOD) and pulled out two hamburger patties from the refrigerator.  I called downstairs to Daniel and asked him if he'd like to cook his own burger.  He said "YES!".  I'll just repeat that.  He said yes.  So we went through the process with me talking and him doing.  He clumsily flipped them with his spatula while talking about the comparisons to Spongebob and HIS spatula.  We made his "salad" which consists of lettuce in a salad bowl.  I steamed some broccoli, he got out his lemon yogurt. I cut up a pear. (See we have made big progress with healthy sides!)  He flipped and checked the burger while commenting that he really "needed a chef's hat and apron".  I smiled and told him that was a great idea.  I'm beginning to see him as an adult.  It's always hard to let your children grow and become adults. It is REALLY hard when they have a disability. 

Reading has been both easy and difficult.  Easy because as far as I remember he could always read.  He'd read signs as a toddler while driving in our car.  He picked up Dr Seuss books and read along.  He was three and reading 60 page Curious George books.  It was difficult because he wouldn't move forward.  Testing his comprehension and debating "what he understands" is a night mare and a constant fight.  One test shows 2nd grade comprehension, one shows 4th then another day 6th will pop up.  No one knows.  So we insist the school just keeps exposing him.  Adults with autism report they understood much more than they output back.  At school he would read but at home he'd stick to the same books he read 12 years ago.  We periodically would try to push him beyond it to no avail.  Then a few weeks ago, after he finished readying "To Kill a Mockingbird" with his peers in English. (no he didn't understand it, but he read it and apparently answered some questions in class that shocked everyone) So I decided that was it.  I told him, "in our house everyone reads for fun before they go to sleep at night." "I do, dad does, and Zachary does and by gosh so will you."  I told him he would read a chapter ever night out of a CHAPTER book.Not his old books.  You know what he said? He said,  "O.K." Like why hadn't I asked before, of course he will!  He does this.  You can try something with a fight 10,000 times then at 10,001 he says "o.k." like it is the simplest thing in the world.  That, my friends, is why you can't stop.  Don't get me wrong.  We all get tired.  I can't push every day of our lives.  We would all be miserable.  But when I get the strength, when I feel like it's "time" again.  I push again.  Sometimes it doesn't work.  Then one day, it does.  And when it does.  It is not only magical, but shocking. 

Parenting a child with a disability is at the same time the most frustrating thing in the world and the most rewarding.  Jumps in ability are so much more obvious that with our neuro typical kids.  They are under such a microscope, and so are the parents.  I had to have an ongoing conversation with the school yesterday about how I answered some of those questions on the transition form.  It is very frustrating to have people question something you answered that your child has been doing forever independently, but the process makes it happen.  She wasn't saying I was lying, but she had a different answer based on something Daniel told her.  It makes me crazy.  I spent a lot of my morning going back and forth with her about it.  Only to have Daniel make his own dinner, then tell me he wanted to go to his IEP meeting today, then read me a chapter out of his book (it's Disney Fairies. But it's a chapter book!) and while reading he laughed and talked to me about it and I sat in his bed smiling as he read it to me. And it was awesome. So for the parents with smaller children with disabilities.  I know it doesn't seem like you will ever get here.  Those who didn't know Daniel when he was little think he was always like he is now.  He was not. It's hard. It's also the most rewarding thing you will ever do. 

Monday, April 16, 2012

Eating Out

A Diary of a Mom shared a link today that I had to pass on  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.

Tuesday, February 28, 2012

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.  

Saturday, February 25, 2012

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?  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.

Thursday, January 12, 2012

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!?! 

Thursday, January 5, 2012

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!