Saving Yourself

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

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

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

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

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

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

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

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

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

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

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

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

It was Easy!

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

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

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

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

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

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

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

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

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

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

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

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!

No Fear

My best intentions where thwarted in terms of blogging on vacation. I wrote one. As I suspected trying to look back on the whole vacation, my mind is boggled up with so much information I can't keep it all straight. As a friend of mine told me after looking at my pictures on facebook, "it looks like you were on three vacations". She's right. We packed in a LOT of things in this vacation and were moving all the time. My children were so thankful to get home "and do nothing". I can't decide if that is bad or good? I do know that I was ready to sit down in my own house and do nothing, except that I have piles of laundry and suitcases spread out taunting me as I sit. Vacation part 1 is Niagara Falls. . .

As I mentioned the drive went well, as soon as Daniel discovered he could use his Ipod and not get car sick. He'd periodically yell from the back seat, "I'm not car sick!" "I'm so happy I'm listening to music." It all makes so much sense. I love when we figure something like that out, but it makes me want to slap my forehead and say DUH, why didn't I think of that before? Better late than never will be my mantra.

We were so lucky weather wise on this trip. It's like "someone" said "the Sneathen's are here, clear the skies". That "someone" knew Daniel wouldn't be able to take a thunderstorm on top of everything else. The day we arrived in Niagara Falls was gorgeous. I mean GORGEOUS! The day before it was pouring rain and gloomy. People said it was one of the best days all summer and it was there just for us! Egocentric? Possibly. I just felt BLESSED that it happened. We arrived, dropped our things and headed out to explore for the next 4 hours. Here is Daniel in front of Horseshoe falls complete with a glorious rainbow that stays and stays. Daniel's two favorite things, together for continuous viewing pleasure. It's a beautiful place. If you've never been you should go!

During our exploration, we went on the Maid of the Mist. (which you can see over my shoulder in the above picture) Daniel was getting annoyed with the long walk to the dock. It was pretty far, and it was pretty warm out, so we were all feeling it. Luck was once again on our side. We got to the long line for tickets and they opened a new line. We jumped into that line and avoided the complaining and waiting that would have followed.

Our theory is "no fear". We could have worried about how Daniel would handle all of this, but we just forged ahead and told him it would be fine. It seems to work. He was unsure, but we keep reassuring him. We were leaving the next morning so we only had so much time. Daniel had said he wanted to ride on the Maid of the Mist when he saw the video on the internet. Todd and I knew that it would be stressful for him, because as much as he likes the water, he likes to be submerged in the water. He is not a fan of a light mist floating over him, especially with clothes on. He is very very concerned about peoples clothes getting wet. It is very upsetting. We keep trying to reassure him that everything will dry, it's no big deal, but to him it is. So part of me was nervous about his reaction. I was just moving forward with my new found no fear attitude.

We donned our "complimentary souvenir rain ponchos" and waited for our boat.We chose not to run to the top front where you get soaked for obvious reasons. Daniel was quite stressed but probably only we would have noticed. Everyone is too excited about the ride and not paying attention to the kid worrying about his shirt getting wet. He wasn't making a scene, but if you know his facial expressions you could see the worry. It is an amazing view! The power of the falls is remarkable. The boat gets right up to the bottom of Horseshoe falls and stops for a while. It felt like we were inside that permanent rainbow. You could see the colors around you. I could also feel when Daniel relaxed. The air changes around me and he actually started to enjoy what he was seeing. Todd and Zachary ran up to the top, which sort of stressed him again, but I stayed with him and reassured him, that we don't have to worry about them.

It is so powerful for him to see for himself that what we are telling him is true. I think we know what his limits are and are very respectful of that. He needs a push. I know what he'll like. In these times, he learns so much about acceptance. It empowers him to move forward, to take a chance to see new things and not be stuck in his world. It can be uncomfortable at times, but it is so worth it. He is so proud of himself when he does something that is hard for him. Aren't we all? Aren't those the things that help us all grow? The things that leave us feeling better about ourselves. When you are armed with that, anything is possible. Granted, the things I'm talking about are pretty small compared to most families. I understand that our standards are different. We try to work around them. As with any of us, we are doing our best. If you don't have a child like ours in your family you probably won't understand, but there is a fear that comes with it. We are always fighting it. This whole vacation was about trying new things. I knew he was ready or I wouldn't have attempted it. No Fear.

Progress with Fears

Fears. Everyone has them. But for some reason it is the thing taking center stage for us right now. I don't know if we make that happen or it somehow evolves on it's own. However it comes to be, it is here and the problem set forth is in front of me to "solve". It's what I do. Something is presented and I spend all my time thinking about it and trying new things and working it out. Usually, I actually get it done. Think about the bike riding, the baritone etc. It doesn't happen over night, but I WILL make it happen. Maybe it's a good thing I am so stubborn? Maybe it is what I was meant to do all along? It doesn't really matter, because it's what I'm doing now.

Sometimes with Daniel's group therapy they get homework. The week before Memorial Day they got a homework sheet about being afraid. I talked about this in my Belle Tire Cares post. I thought that was funny, not funny ha ha, but funny in that strange 'look how the universe works' way. This past Monday we turned in his homework and this is what it looked like:

I don't know if you can see it. But the top picture is the bee he drew which is too cute for words. The bottom is the gazebo we built as the way to solve our problem. The interesting thing is when I took out this homework to work on, he got very upset, hands over ears yelling no no no. I said "Daniel we'll just talk about bees" (I knew he was afraid I'd bring up Belle Tire) then he yelled, " I don't want to talk about the Belle Tire guy". Excuse me, but that is HUGE. That is the first time those words have ever crossed his lips. Granted he was panicked, but he a. explained why and b. said the words Belle Tire guy out LOUD. I considered that a HUGE step forward. I had finally convinced him we were only talking about bees (hard to do when someone is plugging their ears the whole time) and finished the homework. I stayed true to my word, only talking about bees, which is VERY important, so they trust you. If you break that trust, forget it. It would take so long to build it up again.

At therapy, I pulled her aside to tell her what happened and, GET THIS, she had a kid on the spectrum before who's greatest fear was Belle Tire! I couldn't believe it. She has actually dealt with this before! After I explained it, they went into the group. Daniel shared his bee page during group. No one else did their homework except us (typical) so they all talked for a bit about if they are also afraid of bees. Then that tricky therapist said, "does anyone else have a fear of something else? Maybe something you might see on T.V.?" She said that Daniel's hands flew up to his ears and he said he didn't want to talk about it and excused himself to go to the restroom! I think that is HUGE progress. Maybe I'm easy? or delusional? but I actually think we are getting somewhere. Baby steps. He seems to be dealing with it a tiny bit better. He's still panicked, plugging his ears and refusing to come into the room if the TV is on an unapproved channel, but I'll take what I can get and keep pushing along, slowly but surely. But I feel like the surface has been cracked. Just what I needed. Something to keep me pushing through. Ahhhh progress.

The Secret Lives of Bees

Spring, the refreshing renewal of trees, grasses and flowers. The joy of watching everything turn green after a long cold grey winter. We look forward to it in our house as soon as fall is fading into winter. Especially Daniel and I. We like summer. And while most people like summer, I like summer so much because I find almost no redeeming quality about winter. So when the weather warms up, Daniel starts to spend more and more time outside. He has free reign about going in and out. He's never been "a runner". He knows his boundaries and sticks too them. For this we are extremely blessed. He won't leave our property. But goes in and out of the house sitting on the porch singing, or on the trampoline or swing set. It's very relaxing. Until IT starts. IT is the bees and mosquitoes. . . and boy are they back in town.


I find it amazing how my selective memory seems to work. I can't remember if we have this problem every year and slowly we get him more comfortable with being outside with the little creatures. Or if it is a particularly bad year this year. On Memorial Day is was a gorgeous day here in E.L. and we spent most of the day out on our deck. Our deck is easily 10 degrees hotter than the air temp in the front of our house and on this day it was cooler, so the deck felt perfect. Todd's parents came over and we sat outside talking. The boys were going to eat lunch outside. But as soon as Daniel went out with his food. The bees started flying around. Bees are right up there with his other greatest fear. The Belle Tire guy which I talked about here and here. So the bees are back and with it Daniel's anxiety's have been raised one hundred fold. He was so panicked he spent that whole beautiful day inside. It broke my heart. I know how badly he wanted to come outside but he was just too scared.



We have talked many many times about putting a screened porch on the back of our house. It would solve many problems. For one, our deck gets so hot, once mid June comes you can barely be on it during the day. At night you can't because the mosquitoes get so bad. So the screened porch would really solve both of these problems. My friend and neighbor is having one built as I write this. I am having major porch envy. Last weekend I was at another friends for a BBQ and they have one too. Envy. It just isn't an option for us right now. We don't have the money and with other things looming (like a new roof) it's not a good time. How do we help him deal with his fear of bees? If anyone has any thoughts I'd love to hear from you.



I have tried to find out what it is that scares him, because he's never been stung. We had a talk about it, but he gets so upset at the mention of "bees" he goes right back to that place of panic. I found this segment in the book "Sensory Perceptual Issues in Autism and Aspergers". 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). This is why when we bring up, say, "Belle Tire" he covers his ears and starts screaming because he literally relives the scary moment over and over. It's like a nightmare version of "Ground Hog Day". Same with the night I asked him about why he is afraid of bees. Hands over hears, red blotchy face yelling and crying. I tried to calm him but I want to get to the bottom of why it upsets him. Is it the buzzing? Is it a fear of being stung? Is it the flying around unpredictably? He did get out that it was the buzzing and flying around. I don't like those really loud buzzers either and from a kid who when he was 4 and our magnolia tree was FULL of butterflies, literally hundreds of them all at one time, that "the butterfly wings are too loud" when I asked him to come look with me. Yup. butterfly wings are too loud. Now I think this shows the intensity in which he deals with these sensory issues.

My distress of poor Daniel taking shelter in our house after waiting months for warm weather sent me out for an option instead of adding a $10,000 + addition onto our house. As you know I love a good research project. The next day I made a fairly impulsive buy. Here it is.

Make an on-line slideshow at www.OneTrueMedia.com

Daniel is SO excited about this gazebo as is everyone else. He says he can now "eat on the deck safe and sound, away from bees and mosquitoes". We'll still work on helping him manage his fear, but in the mean time, I think we have found a temporary solution to give us some more quality family time. By the way. This gazebo was purchased from Target, on sale for $193.00. And, no, I'm not getting any compensation for pointing this out (I wish), I'm just trying to pass along helpful information. While I don't generally enjoy dropping $200 I think it was a good deal. In my opinion it's attractive (ours doesn't look quite as good as the Target add with their fancy furniture etc. but it is useful, and not so drastic as adding onto our house. All in all it's a good solution.

Belle Tire Cares

Yesterday I had a comment on my blog from the Social Media Director of Belle Tire. My reaction to this was immediate laughter. I love the fact that they not only found my little blog, but cared enough to leave the following comment:

Hi Michelle,

I've been reading your blog for a while now. (I blog-search Belle Tire on a daily basis.)

Kate was right, Belle Tire's are only located in Michigan and Northern Ohio.

We're so sorry to read of your difficulties with Tire Man. I know that it must be stressful and we hate to have any part of it.

Let us know if there is anything we can do to help.

Thanks!
Kari McLeod
Social Media Coordinator, Belle Tire Distributors Inc.
belletirecares@belletire.com

@Tire_Man
http://belletirecares.blogspot.com/

A few weeks ago I googled "belle tire mascot" to see where I would show up on the google list. The answer is 5th. 5th! My husband had suggested that someone from Belle Tire would probably find the blog based on that to make sure I wasn't infringing on the copy write of their logo or something. What I particularly loved about Kari's comment is that they have been "following my blog for a while" which I had sort of already figured out from my traffic feed. At least I thought that was a possibility. I wondered if it was just to make sure I wasn't bashing them, and I have come to find out that "Belle Tire cares". To top it ALL off the Belle Tire logo is now prominently displayed as a "follower" of my blog! Good thing Daniel doesn't read my blog because if he had, he'd never come back to it with that logo there!

I love how the universe works because on the same day as this comment was left I brought Daniel to his usual therapy on Monday evenings. Oddly enough, the theme was, "what we are afraid of" Ok, that's just weird. Get this, his homework assignment is to "draw a picture of what you are afraid of". Please understand I said nothing to his therapist about this. Partially because last time I brought it up she wanted to do "private sessions" to focus on helping him get over his "Tire Man" fear. I didn't feel up to paying $50 a session and taking the time to get him there once a week. Plus I was pretty sure that after the first session he'd never want to see her again EVER because he'd be so pissed off. So I had put it on hold. For whatever reason I am now feeling it's time and I thought I'd try to tackle this myself. I am not a therapist of course but I sort of "play one in real life".

So we are sitting outside of the therapist's office last night and I was looking at the homework, which is due in two weeks, because of Memorial Day, and read the assignment. I purposefully said in front of the therapist, "oh look Daniel you need to draw a picture of what you are most afraid of".

Daniel says- "I'm afraid of thunder and lightening"

me- "no you are not" (he's picking something he isn't afraid of so he doesn't freak himself out.)

Daniel- (gives in slightly and says) "I'm afraid of bees."

me- "You're right Daniel, you are afraid of bees. It would be a great idea to draw a picture of a bee, then you could explain why you are afraid of them and what you do to get around that. But I'm thinking of something you are even MORE afraid of."

(guns? mass murderers? snakes? Nope, a smiling TIRE!)

Daniel- looks me in the eye and I'm thinking Belle Tire, Belle Tire (I swear he can read my thoughts sometimes) and his eyes get huge and round, hands fly up to his ears and he starts SCREAMING NO NO NO! DON'T SAY IT! (all in front of the therapist)

Therapist- "It's ok Daniel we won't talk about it, go to your happy place, think of something happy."

Daniel- (nervously starts singing) "Sing. . .. . sing a song, make it simple, to last your whole life long. . . . Don't worry that it's not good enough for anyone else to hear. . . just sing, sing a song . . .. (anyone?? Sesame street! That's his go to his happy place song that turns him around!)

Me- heavily praising him for turning himself around so quickly!!! Great job!! Singing is a strategy we've worked on to help him pull himself out of a downward spiral when he feels it coming and he DID IT ON HIS OWN! All part of the problem.

My reactions to all of this are so mixed. I find it fascinating that I had decided to start working on this and all of the stars have come together, seemingly, without me pushing them that way. It must be time. Oh how much easier some things in our lives would be without him fearing seeing that Tire man on tv or on a billboard. How silly to us, not to him, that this guy is so terrifying and standing in his way. How funny and sweet that the company is aware of it and would like to help in some way.

I'm assuming that changing the logo that they've had for what 20 or 30 years is not an option? LOL. I posted this on facebook and got many suggestions on how they could help. Some being jokes, of course. Here are some of the comments:

"I just hope they don't send you a big box of Belle Tire logo stuff!"

"The Belle Tire Man is VERY creepy. I do not react as strongly as Daniel, but that thing is definitely a boggart."

"A possible donor for the sensory room?"

This last one needs explaining. Two of our K - 4 elementary buildings are putting in "sensory rooms" for a place for children with sensory difficulties to escape to during the day. It can be a place to relax. We are hoping to add equipment that would be calming and help them get their neurological systems back in order. My son Zachary and the cub scout troops put efforts in the whole year to get this going. They raised over $800.00 to donate to the school to help this dream become a reality. People donated a lot of time and effort. We also used it as a way to teach the cub scouts about autism with our theme being "How to be a friend to someone with autism". It was a fantastic idea! How wonderful for the boys to give something direct to their school. A friend of mine and I were laughing about the donor idea saying, "wouldn't it just be the cherry on the sundae if Belle Tire would donate money for the sensory room in behalf of Daniel?? Now that would be full circle.

While I do laugh at this whole crazy scenario it is partially out of the feeling that comes over me sometimes of "how did I get here?" Could I ever have imagined that my number one job at one point would be trying to rid the trauma of a logo? That I would spend years helping Daniel master the skills of bike riding? That I would constantly have to try to put myself in his shoes to see what he sees to try to help him move to the next level? That part of my "job" would be committing myself to families and be their representative in our school district and beyond (more on this later)?

Boggart Therapy Part I

Many blogs ago I was talking about Daniel's horrible fear of (cue thunder and lightning) THE (evil) BELLE TIRE GUY! The cute little smiling guy who sends my son into complete orbit. Mama Mara, who I've mentioned often, suggested a "boggart therapy". According to Mama Mara, "A boggart if you are not a Harry Potter freak, is a magical creature that can morph into the thing you fear most. To combat a boggart, wizards use a "Ridiculoso" spell which morphs the scary creature into something comical."
She used it with her son when he had a fear of the KKK. I don't know where he's been hanging out, but none of these fears can be explained.

Because our kids are so visual they get this image in their head and can't get it out. It's like it's in 3D right in front of them. So she suggested changing that visual image. She would draw pics of KKK guys and then show what's under the robes, ie a pointy cone head, ladies underwear, whatever. Trying to make the images comical, or maybe conical as in their heads! She suggested I use this for Daniel. I think it is a FABULOUS idea. You are very creative mama. BUT I've been holding back. Why? Because I know it's going to be a helluva lot of work, that's why. So as usual I try to gear myself up until I'm ready.

Enter the next problem, which is vacation. The last several vacations we have gone on have been to my aunt's house in Florida and so we just don't need to go out to eat much. This fear of the Belle Tire guy keeps us out of many many restaurants. If there are tv's in a restaurant, even if they are muted they keep him from entering. I get a lot of kind souls suggesting we just start trying to bring him into restaurants with tvs slowly but surely. While this is well intentioned advice, I say if that's what needs to be done YOU do it! lol. This can only be suggested by someone who has never seen his reaction to tv's anywhere. Hands fly up to ears, stress begins then escalates quickly to panic and yelling to cover up any POSSIBLE chance that the Belle Tire guy will appear and give his patented throaty "Belle tire". To hear the voice watch this video, that is if you can keep awake through the 1 minute of car alignment talk...


No it isn't happening. Right now trying to get him anywhere near a restaurant with tv's would be like saying "hey lady get naked and jump into the deep abyss, don't worry it's filled with snakes and crocodiles, you'll be fine".

I say vacation is the motivator, because we are going on one end of July. We always go "up north" sometimes for weeks, but again we are at a house, with a kitchen, and a Grandma who lovingly cooks or a Grandpa who grills! If we go out, we order in. It works most of the time, but now we are going to visit our family on the east coast. We'll be staying in hotels for over a week and driving through Canada to get there. We will pack coolers of food and get hotels with refrigerators and microwaves, but there WILL be times we'll need to eat out and I don't want to be stuck in a situation of starving kids and only restaurants with a tv in them with Daniel screaming on the curb. Nope. Don't want to go there! In other words, no time like the present to start this process.

This brings me to the fact that I drew a Belle Tire guy the other night. Here's my drawing:


My thought was I'd draw him as is then Daniel and I could add changes to him to make him silly. High heels, a clown hat, a big giant nose, silly glasses, whatever. I got as far as drawing him and got distracted and left the drawing in the family room. Daniel walked in to talk to me and I totally forgot about my drawing, which was sitting on the table right next to me. So in he walks and I swear it looked like he ran into a glass door! His hands shot to his ears, he fell backwards laying on the ground screaming "he can't talk he can't talk!" Which in Daniel speak means he doesn't want him to talk. I have to admit, I was almost laughing, which just sounds really really mean, but it is such an extreme reaction, it struck me funny. I was keeping a straight face, but was trying to get his attention. I was careful not to lean over him for fear he'd kick me in the gut, but was yelling over him, "IT'S JUST A DRAWING IT WON'T TALK!". He eventually heard me and started to calm down. I think we've determined it is the voice that freaks him out?? So I don't think I'll be changing that drawing any time soon?? My Plan B is now to maybe get him to look at my drawing and KNOW it won't say anything. Then we'll start making him silly. For now, I'm taking a few days off and calling it session I of "scaring the living daylights out of my child" complete.

Someone please tell me there are no Belle Tire's on the east coast. Please.