Swim Season

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

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

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

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

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

The Wahl Custom Shave System

My husband and I continue to say "he has a beard, he must be really smart" and start snickering, taken from http://sneathenfamily.blogspot.com/2011/01/funny-friday.html this video.  The ridiculousness of all of it just strikes a chord with us.  Obviously, the fact that someone has a beard, does not make them smarter than you.  In the video, if you haven't seen it, the Special Ed director is telling a parent their school psychologist is smarter than her because he has a PHd.  When the mom says that she also has a PHd he follows with "but he has a beard."  Tt is also funny (to us) because beards have long been a topic of conversation in our house.  I am not sure why, but Daniel loves beards.  In the same way that he yells out "look a little yellow car" or "look a red car" or "look a motor home" or "look a (insert emergency vehicle here)" he yells out "look that guy has a beard!"  The obvious difference between all of these things is that a motor home doesn't turn and look at you with the expression of "yeah, so what?" on it's face.  And if the guy has a really loooong beard.  Forget about it!  It's his FAVORITE. He gets so excited he can barely contain himself.   You would think that ZZ Top would be his favorite band, but I haven't introduced that group to him, yet.

Although I can hear Daniel now, walking around singing "Sharp Dressed Man" whenever he is feeling particularly handsome...

Yes, Daniel loves a beard.  When Todd has missed a morning shave, Daniel has loved to rub his hands on the stubble and talk about his whiskers.  I wish I knew what the draw was, but I do not.  Come to think of it, having hair just growing out of your face might just seem silly enough to draw his attention.  Why does that happen?  Why do some people have it and some don't?  All possible questions going through his mind. 

With conversations on beards he is SURE to start scripting about "Wahl's beard and mustache trimmers".  He knows entire ads about these things.  Now THAT, I know where that comes from.  So I'll digress for a moment.  Back when he was about three years old and things were rapidly falling apart in our lives, haircuts became a huge huge problem.  Of course Daniel has always been a kid with the thickest, fullest head of hair on the planet.  At 6 months old he lost all that baby fuzz, it just fell out one day.  I swear to you that weeks later he had a full head of hair.  This caused us to start getting haircuts by his first birthday.  At first it wasn't a problem.  He'd go and sit in the car at the kid hair salon that had video's over head playing Barney.  He'd get his sucker and be a happy kid.  Then, as with everything else, one day it just changed.  He wouldn't go.  He was scared to death, he'd go into an absolute meltdown kicking and screaming, fight or flight.  I had no idea what to do with him.  After numerous tries from both my husband and I and several instances of slinking with a screaming kid unsuccessfully out of the kid salon, we gave up.  I went and bought a clipper set.  Did this solve my problem?  NO.  But it did save us public humiliation and we shaved him at home.  Don't get me wrong, it wasn't necessarily us demanding he have short hair.  Not only did he hate haircuts, but he hated having long hair.  This is what you'd call a vicious circle of hell.  At the time we didn't understand that his sensory system was out of control, that the clippers probably DID actually hurt.  We didn't know he had autism and what that meant.  So, and this pains me to say, we held him down and cut his hair with clippers.  He would scream and fight and it was HORRIBLE and exhausting. 

Along with those clippers I purchased, came an instructional video.  I don't remember the details on how it started, but he started watching this video and of course, to this day, he remembers every word of it.  It was a rather old video and he still starts quoting about "the flat top" or the "fade" haircuts.  All of the possibilities with the "Wahl custom shave system!"  He scripts on and on and always ends with "Wahl makes it easy".  He says it every time we go to get his haircut or mention that he needs one.  We are actually going today after school.  I am happy to say that he now goes to my (wonderful!) stylist and successfully gets a very nice haircut!  It DOES get easier!

So one day he saw a commercial for the beard and mustache trimmer.  Well, that was IT.  Since then he says that someday he WILL have a beard AND get to use the Wahl beard and mustache trimmer.  Could anything possibly be better than that!?  I have heard it for years!  This weekend, I was sitting next to him at Zachary's basketball game.  I looked over at him, in profile and tried to brush something off of his chin.  I gasped.  Really, I gasped! Because I realized what I was brushing away was ATTACHED.  In fact there was more than one.  There were MANY long whiskers on his chin.  I could see a shadow over his lip.  He is growing facial hair.  He asked me in a very annoyed way what was wrong when I looked so shocked.  I told him he had whiskers on his chin.  To which he simply said "I'm getting old.  Now I can get a Wahl beard and mustache trimmer!"  He got a very self satisfied smirk on his face and said, "I want a beard".    At least he'll be smart.

It's Not You, It's Me

I was having a "conversation" with my Aunt yesterday.  That is in quotes because it was in our usual way that we converse, through email.  I had updated my Facebook status the night before that I was at the middle school with Daniel.  She was inquiring about why we were there on a Friday night (especially before a long weekend).  The answer was it was a middle school "Activity Night".

Activity Night consists of several things.  First and foremost is the DJ in the large open lunch room.  Complete with flashing lights and large speakers.  This is the center of the evening.  The lunchroom has a lot of windows to the hallway with separate doorways, which allows a good set up for having other games in the hallway.  They have Foosball, ping pong and cornhole.  I linked cornhole so those of you who do not live smack dab in the middle of a college town and experience tailgating 8 weekends a year can look it up and not wonder what they are making available for these teens!   They also have the gym open for basketball, although I have never made it to the gym because Daniel goes for the dancing. 

Yes, that's right.  My sensory sensitive, autistic son, prefers to hangout in the lunch room with the LOUD music, the flashing lights and masses of teens jumping to the beat of Katy Perry.  I say jumping because there seems to be a lot more of these large groups of kids jumping in unison than actual "dancing".  Not that I'm expecting waltzes or anything, but I don't seem to remember groups of jumping.  I'm getting old.  He has been to all but one activity night since he started at the middle school last year. (ours is a 7th & 8th grade school). 

Last year I was a volunteer at all of them, because I knew the mom who was in charge of gathering the saintly mothers who gave up a Friday evening to stand guard around the halls so children can't steal off to other parts of the building or to watch the dance floor and gym to make sure everyone is doing what they should be, or even volunteering to sell pizza, pop and candy to the always hungry teenagers.  I usually took one of the positions of the dance floor since that is where Daniel prefers to be.  It also allowed me to move around and keep my eyes on him.  Although this year, I do not know the person in charge of volunteers and she seems to be tapping into her group of friends to work the evening, since I know not one of the adults on site.   I have been doing a lot of reflection about how these nights make me feel.  Frankly, it's not all that pretty.  But I am nothing if not honest, so here it goes. 

I spent that whole day of Activity Night, griping, snapping and having a huge knot in my stomach.  In short, I'm on the brink of a panic attack.  I actually do not understand this at all.  I don't know why I do this to myself and what I want to do is say "NO you are staying home with me in the safety of our house".  But safe from what?  I'm not sure I really know. 

Maybe it has something to do with him growing up, but I don't really think that's it.  Maybe a very very small part of it, but not much.  I sometimes say I want to keep my eyes on him not because of what he will do, but to protect him from being teased.  I'm not sure why I'm afraid of that, because we have been really really lucky.  I have had no reports of him being teased since second grade and that was one incident on the playground.  Those kids were all taken into the Principal's office and talked to.  I don't know what was said, but that principal said she was confident it would never ever happen again.  And she was right (oh to be a fly on THAT wall) We have built up a large and very faithful group of kids around him.  So far it's worked.  Maybe it is the unknown.  There are a lot of kids in the school that fed from other schools. Kids he hasn't been with since 1st grade.  But I don't think that's it either.  Again, maybe a very very small part. 

Will he get overwhelmed with the stimulation?  That has never happened in this scenario.  I think we can safely say that after 8 activity nights it is not going to happen.  He leaves the room and goes into the hallway when he needs it quiet. 

Is it that he has ZERO understanding of money?  When he wants to buy a snack he doesn't know how much to give or how much he should get back.  He might walk away without his change.  He might cut in the line and cause a problem.  Also never happened, but I do usually coach him before he wants a snack. 

Is it that he doesn't always know when he's "done"?  He won't know when to say when and call me if I wasn't there hovering like a helicopter mom?  Maybe. 

I watched some of his "friends" go out of their way to say hi to Daniel and he very enthusiastically greeted them in return.  It pains me that he can't sit and hang out with them and have a conversation.  He just can't do that yet.  He'll end up quoting Elmo and Barney and Sesame Street.  That makes my stomach hurt for sure.  It's hard to watch.  But it doesn't seem to bother anyone but me.  Daniel seems perfectly happy with the interaction he receives. 

So what is it?  What is the problem?  Well I finally decided that the only problem is ME. It is totally MY issue and  I need to get over myself.  I need to stop the panic attack and let it play out.  Actually I DO do that.  I keep all of the turmoil going on inside of myself.  The only way you'd know is if I snap at you because I am at the end of my rope.  So that's what I do.  I suck it up and go.  This time since I wasn't working I brought a book.  I sat in the corner and read in the dark room.  Sometimes Daniel would come sit by me.  I realize this doesn't look "normal" but honestly, not much about his situation is "normal".  The kids are used to me being around.  I thought the book would be a buffer so I'm not staring at what everyone is doing.  I did receive two comments from adults who wondered how I could a.) see in the dark and b). concentrate among the banging music.  Neither was a problem.  Like Daniel, when I am totally overwhelmed and in sensory overload I HAVE to block everything out around me.  It was actually the most focused I've been reading in a long time! 

Near the end of the night, Daniel looked tired and he was sitting by me basically waiting for the clock to read 8:30.   A girl from his class came over with some pizza.  She set it on the table, then said "Daniel, do you want to dance with me?"  He didn't hear her (because he is blocking everything out too!) so I repeated it to him.  I saw his face change from exhaustion to excitement.  He SCRAMBLED up to his feet and yelled "YES".  Following her out to the dance floor.  I looked over the top of my book but could only see the top of Daniel's head over the crowd.  I couldn't see them dancing together.  I restrained myself from running out there and taking a picture on my phone (I would never do that, but I admit the thought ran through my head!) I left them alone and went back to my book.  It was only then that I realized that the knot that had been in my stomach all day was gone.  I silently patted myself on the back for overcoming my own fears (yet again).  That I just let Daniel be Daniel and let him have the experience.  Maybe someday soon, won't even go in and just drop him off.  Maybe. Someday.  One step at a time please.

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)?

What's the difference?

Something as big as the movie outing doesn't come around every day for us. Oddly, this weekend, the very next night, Daniel was invited to a birthday party. Let me preface this by saying, this is not exactly a common thing. It is one of the sad facts about being "different". I've written several times that Daniel has the best peers. Kids who really care about him. But when it comes to hanging out or going to parties, it doesn't quite extend that far. Some parents get very worked up over this. I understand it though. I really do. When you can barely carry on a conversation, it makes it tough.

I have found in talking to other parents with kids on the spectrum, it seems we have a higher than average rate of parties. I would say Daniel averages one a year. Not an outstanding showing, but I've found lots of kids who have NEVER been invited to a party. Perspective. Now one a year sounds outstanding, doesn't it? As the kids have gotten older it seems that a lot of parties revolve around sleep overs . This makes it even more difficult and it makes sense that he wouldn't go. Although one year his friend *Jim* invited him to a sleepover. I brought him to the earlier party portion then left before the sleep over part started. We weren't the only ones to get out before the overnight craziness began. Believe me, if the earlier part of the party showed what was to come, I wouldn't have wanted him there.

This invitation was from a girl who has been in Daniel's corner since 1st grade. I'll call her *Mary*. That's the grade that he started school with these kids. She is a beautiful, "popular" girl that everyone loves. She has always been a champion for everyone. For years they were always in the same class together. Put that way as a set up, of course, knowing that she would always help him when needed. That's just the kind of girl she is. Her mother told me a story yesterday about a few boys who had been teasing a girl on line. One called her a name. Something very hurtful. *Mary* told them all off and said that if they didn't apologize and stop doing things like that, they wouldn't be allowed to come to her party. One of the boys wasn't there.

The party was held at our community center. During the first half they all got together and swam for an hour, then went up to the party room. There were 30 kids invited. I was fearful of the noise level getting Daniel very upset during this portion of the party. (Not to mention the adults) So I stuck around. I'm the only parent, of course, who still does this. No one seems to pay much attention to it though. They are all used to Daniel having someone with him. It is accepted as "normal". I think I feel more awkward about it than anyone else.

The tables were set up in a huge rectangle. As with most 11 and 12 year olds the room was divided boys on one side, girls on the other. Except for Daniel he was on the "girl's side" I don't think he was really paying attention, he just sat down, then it all filled in around him. *Mary* ended up right next to him. The dad of the party jokingly said, "what are all of you boys, except Daniel too scared to sit by the girls?" This got a nervous laugh out of some of them. Then as expected out of pubescent boys some of them started throwing grapes. Daniel got a bit upset by this, because, you know, you aren't supposed to throw food. Clear cut rules like this are very upsetting to him when being disobeyed. I was on the other side of the room, trying to be as inconspicuous as possible. I was about to walk over to try and relax him, when I saw *Mary* lean over to Daniel and whisper something to him ever so quietly. I would bet I'm the only one in the room who even saw it. It was so sweet and thoughtful. Then she turned to the boys and said "stop throwing food NOW". I love this girl. The best part is, they stopped.

The kids hustled through their food and cake and ice cream, because the next portion was the "dance party". I wasn't aware of this part of the plan. She brought the ipod, the docking station, and a strobe light and a lighted ball that turns, sort of like a disco ball. The lights went out, the music turned on, "Louder", are the calls from the kids. I hold my breath and see what's going to happen next. "Louder, turn the music up", says another. I take in my breath a bit more. All of the girls sans one or two are in the middle of the room, giggling, dancing, and singing loudly to the music. Some of the boys are sort of circling the circle. Some are staying way back and watching. Daniel wanders over to the lights and for a few moments is captivated by the strobe effect. He wanders around, really not looking too different from the other boys his age. The sound doesn't seem to be bothering him, which is allowing me to start exhaling a bit. Then he walks over to the outside of the circle. I can see him watching them dance. Then. . . . he starts to dance. It was a bit goofy at times. But one of the BEST things about autism, is the joy of not caring what anyone thinks. I think we could all use a bit of that couldn't we? I whispered to the mom, "he is the definition of 'dance like nobody's watching'". She said, "he's got some moves". And there he was dancing with his peers. Completely and totally enjoying the music and the company. At that moment, not being any different from any other 12 year old in the room. It was beautiful.

After a while he came and sat down by me and said, "I'm kind of tired from all that dancing". The other parents were starting to show up, so we decided to go. He yelled out, "see ya later everybody", they all yelled "bye Daniel, we're so glad you came". He thanked *Mary* for inviting him, her parents too. Then we walked out into the cold cold night.

The whole way home I was smiling. I was also realizing that there may be a lot more dances in our future with me lurking in the shadows, making sure he doesn't go into sensory overload. Passing myself off as just a chaperone. The other parents there will also be making sure their kids are behaving as they should be, and keeping their eyes on them while they enjoy the dance. We'll both be watching them grow and mature. There really isn't much difference.