We Did it!!

The pediatrician's office didn't call me back that day.  I had gone to Walgreen's in the evening after voting in the Michigan primary and dropping off the DVD "The Girl with the Dragon Tattoo" at the video store, just to "see" if miraculously the Valium was there waiting. It was not.  With a sigh I decided I'd call back in the morning and start over.  Instead, the nurse called ME first thing in the morning.  Relieved that I wouldn't be starting over (and cursing Dr Israel for ya know, taking a VACATION! (how dare he!)) The nurse said the Dr. was concerned about drug interaction.  When I assured her that Daniel was on no medication and that they weren't putting him under (HENCE ME WANTING THE VALIUM) she went back to the Dr.  I know they have to be careful, but sheesh.  This time she called me back to say it was being called in immediately.  I kept sending mental signals of (get me TWO) one for me one for you...ha ha ha.

I wrote Daniel a simple social story the night before and left it on the computer keyboard for him to read first thing in the morning since that is where he immediately goes.  I explained what would happen and how great I KNEW he'd do and like I usually end these things I told him, if he did a great job we'd go get ice cream after.  Nothing works like a bribe, I mean "reward". 

I was starting to feel like who needs the Valium, he can do it!  I was feeling strong and confident.  I had wondered aloud the evening before to my neighbor (a PA) how Valium would affect him.  She said, "I expect he'd sing a lot".  hmmmm. Sounds like usual!  I was also curious how the Valium would affect him.  In group situations he has had very high anxiety lately.  I can see the anxieties building and how hard and distressing it is for him.  We have discussed that it "may" be time to explore something to ease this for him.  So the wonder was strong in my head.  I decided to go ahead with it.  It can't hurt to take one pill and I'd hate to be in the middle of it kicking myself for NOT doing it and making it harder on him.  So 40 minutes before, I gave it to him.

We were driving to the appointment.  There were roads closed due to construction (thank goodness Todd told me this, nothing like getting him upset by coming to a road closed sign!)  So I was driving a "different way" as Daniel says. Daniel's amazing sense of direction and memory kicked in and he was wondering where we were going.  He noted this is how we went to Jennifer's house (someone he took music lessons from TWO YEARS AGO.  Except he was asking me very calmly and happily?  Hmmmm two cheers for Valium.  Then he started singing!  and singing and singing.  Two points for my neighbors good call!

He charged into the office happily, singing "Hi diddily dee, an actors life for me..."    which if you read this post that I linked was right before disaster struck on vacation.  I literally stopped in my tracks hoping this wasn't foreshadowing.  He took his two "rides" in the chair up and down.  Remembering that 4 is up and some other number is down and some other number lays him back.  Jenny lets him do this on his own and it's his routine.  I never even remember that this routine will happen, but Daniel and Jenny do, so there you go!  She starts rubbing numbing gel around the tooth and we wait.  She has her finger in his mouth so he won't suck it off.  And he just STAYS LIKE THAT, chatting about her vacation and his.  He's just laying there.  Seemingly, fairly happily.  She puts more on.  We wait.  She is wiggling it and wiggling it.  Trying to loosen it and talking to him in the kindest voice.  I love her.  Really, I think I'm in love :)  It's such a relief to find someone who "gets it".  After what felt like a long time (and still no anxiety showing) the Dr comes in.  He is touching and wiggling and poking.  Jenny and I are right there telling Daniel how AMAZING he is.  Daniel did ask if it was "taking a long time".  As Daniel describes it now, "then Dr Hartman took out the BIG PLIERS"  (which is exactly what it looked like).  He grabbed the tooth and started twisting and then POP out it came!  Daniel said "FINALLY!  At last it's gone!"  I exhaled.   It was bleeding, they put in gauze.  There was clapping, cheering and joyfulness.  

He didn't like the gauze, but didn't like the bleeding either.  We took some gauze home in case it started bleeding again and went out to the car.  I was a big geek and brought my camera.

with a hunk of gauze and blood Daniel says good job!!

look at my "chocolate chip on a regular cone"  my favorite!!

I have a giant hole in my mouth!

And by Daniel's request, he wanted me to add this video! How cute is that? This is the only one I could find on You Tube that didn't have their own child in it or wasn't edited obscenely. These people have a messed up TV! lol. But the song and the intention are right! I'm so relieved this is done. I was exhausted after it was over. Oh, and they did give me two Valium. One in case of an emergency for mom?

Back to Life.....Back to Reality.....

You know that song..."back to life, back to reality..."  I'm dating myself here. But it's by Soul II Soul in the 80's.  That first line keeps running over and over in my head.  I am facing a rather unpleasant issue this week and it's making my head hurt.  I decided to face up to it yesterday and I called the dentist for Daniel.  He has been blessed (as have we) with pretty much perfect teeth.  No cavities thus far (he's almost 14) and this is with not having them cleaned for YEARS.  They are straight, spaced well.  Nice.  Thank GOD.  His very last baby tooth became loose months ago.  The. Last. One.  We are almost there.  The golden ring is in reach.  We've been riding this crazy carousel ride round and round with the dentist and we are on our last circle the ring is there, we tried to grab it and the damn thing got STUCK.  Literally.  The darn tooth refuses to let go.  The adult tooth is almost in.  It's in front of the baby tooth.  The baby tooth is stubborn.  And it's stuck.  And I'm not happy.  Not one little bit.

We have worked so hard at the dentist.  We have spent years.  Yes YEARS, mastering the cleanings with our ever so patient and wonderful Jenny the hygienist.  The dentist, Dr Hartman is a young guy, and so very very patient with Daniel.  This spring we got our first complete set of X-rays!  They all celebrated.  He hasn't been able to do the bite ones, so we tried the full head x ray. You stand at a huge machine bite down on a guard and the machine actually circles your whole head.  We have the X ray in his room.  They printed it out for him.  They are wonderful and know just how to handle him.  He calmly does cleanings after years of practice.  He gets no sedation.  Never has.  We chose to take the long slow road, so that someday he could just walk in and do it.  We accomplished it and I'm very proud of that.  I think it empowers him that he can do it without any help.  He let's people put instruments in his mouth and scrape!  That can't be easy!  But he trusts them.  They have earned that trust.  But now. This tooth.  GAH!!!

During the last triumphant exam they said if the tooth wasn't out by July 4th, to call and set up the extraction.  Well, I waited until August 2, but who's counting.  The thing will not let go. I thought I should get it done before school starts.  I called on Monday and they said "you can come in at 4:00 today" and I panicked!!  "I'm not ready TODAY!!!" So it is tomorrow at 2:00 pm.  What am I scared of?  I'll tell you.  This one thing could undo years of work.  He might not want to go there again.  It might panic him and take him years to get back to this place we've worked so hard to get to.  They cannot put him under there.  I think it's because he is a minor and they are not pediatric dentists, I'm not sure.  But I don't know if I'd opt for that anyway.  In my opinion he might see that as much of a breach of trust as just getting it done.  So today I am preparing.  And I'm literally giving myself a migraine with worry. I can feel that tingling starting on the right side of my head like it does. 

I just hung up with the phone from a conversation with someone at the Dentist office.  As I was asking questions about what the plan is so I could prep Daniel, she said, "I totally understand, more than you know".  Apparently she has a son who is now in his 20's who has autism.  What a relief.  I know the others would understand but she understood every word.  So the plan is:

1.  He will have the tooth pulled in "Jenny's room" where he normally gets his teeth cleaned.   This is not procedure.  That would normally happen in the "Doctor's room".  It is too keep him in familiar territory (or should he be in a different room so he doesn't associate it with Jenny's room?) 

2.  Jenny (super hygienist) will be there.  Because he trusts her and she always seems to know what he can handle and what he can't.  She always says the right thing.  (Or should we get a "mean hygienist" so he doesn't relate any of this to her?)

3.  They can use nitrous oxide to relax him (or will he feel claustrophobic with that on?)

4.  They will put on a topical numbing whatever you call it (or will the taste and smell make him crazy?)

This is all me arguing with myself.  Trying to decide what is right for Daniel.  I argue and argue with myself.  This is what I do.  Until I finally have to just DECIDE.  There is no way to know what is correct, I just have to go with my gut based on past experiences. 

Talking to the office I said do not even think about a shot.  Don't even mention the WORD.  He is not scared of anything more in this world than a shot.  That will totally undo him FOREVER.  They said "good to know".  So if it can't be done with the above we'll have to go somewhere else where he can be put under. 

I then called his pediatrician to ask for a prescription for a Valium.  "A" as in just one.  He has done this before, but I never used it.  Unfortunately,  our pediatrician is on vacation this week so it has to be ran past another doctor.  I called the nurses line and laid out the scenario.  We have lots of friends who are doctors, so I hear about people trying to talk doctors into prescriptions for things, so the whole time I was trying to convey that I just wanted ONE to get us through this appointment.  I almost said two so I could get through it too, but I thought the humor might have been lost on the nurse and then I wouldn't get anything!    It's too bad our pediatrician is gone because he would do it in a second he seems to realize I'm not (too) crazy and trusts me.  We have built up a great relationship even though he doesn't always agree with some of my decisions.  But he does appreciate that I listen and have an intelligent conversation with him before I tell him no :)  But basically he knows I'm doing my best. 

So that's where I am.  Waiting for the pediatrician to call me back.  Preparing myself mentally.  I'm going to write a social story so Daniel knows what to expect.  I'm not in Charlevoix anymore.  Where my biggest decisions seem to be which beach to go to or what to have for dinner.  I'm here debating with myself about what will make this as successful as possible.  I'm back to life. Back to reality. . . Just so you have that stuck in your head too, here is the link.  http://www.youtube.com/watch?v=jLHMAFfXYNY&feature=related

Fuzzy Moon

At the end of our vacation week in Charlevoix is what I like to call the "Groundhog Day" portion. Just like that movie when Bill Murray keeps reliving the same day over and over again!  It is the same with the ending of Venetian.   It is the same every year! The kids love it, and I'm sure you can appreciate the fact that Daniel LOVES to do the exact same thing each and every year.  The Groundhog day part starts with the carnival on Thursday.  The good news from that fiasco was that Zachary went back later in the day with his cousins.  Daniel did go back on Friday with his dad for a while to get another chance and "finish" his carnival time.  He was very excited to do this.  I was not pleased that the 20 tickets they had to buy on Friday cost $5 MORE than the wrist bands on Thursday.  Carnivals are expensive! OYE!

Friday is the night of the first fireworks.  Yes I said first.  This is being written by a girl who does not enjoy fireworks or parades.  And this is all we do for two days!  LOL.  I try to keep my chin up, but each year, I'm finding that more difficult to do! I try to be a big girl, I know that it terms of problems, this isn't a very big one!   Friday night they are shot off over Lake Charlevoix.  That was a very very warm evening for northern Michigan and we were able to bring boys swim suits to the beach.  They swam until about 9:00 pm (in Michigan it stays light until 10:00 pm in the summer), so by the time they dried, changed and got settled in, it wasn't too long until the fireworks started.   Most people are surprised that Daniel loves fireworks.  My only thought is that the visual sensation way outweighs the loudness of the experience.  He actually does ok with loudness if he knows to expect it.  It's the surprise loudness that doesn't go very well.  He obviously knows that fireworks will be loud, so it's isn't a problem.  But he loves to yell and cheer for the beauty of the lights exploding in the sky!!

Saturday was the parade. It starts at 11:00 am.  Since this is small town Michigan, it is the same parade every year. Although this year it was a bit shorter.  This was also dampened by rain.  Daniel was tense during it, but had an umbrella and a chair for a front row seat (thanks to his Grandparents who bring chairs down early!)  I came right at 11:00 (delaying as long as possible!) and the rain was just starting, so I was able to grab a few umbrellas.  I took cover with Zachary who part way through looked at me with his big brown eyes and said "are you enjoying this?"  To which I could only answer in all honesty with "not really".  "Me either!" he replied. LOL.  I guess he inherited my anti parade gene?

The interesting thing came later that evening.  We were in the park by Round Lake again, waiting for the finale for Venetian week.  They have a boat parade after dark (so 10:15) the boats are decorated with lights and props and music and parade through the water in front of the park.  This, I must say is a better "parade" than the other!  While we were waiting Daniel looked up at the nearly full moon. It was sort of hazy behind a cloud.  He said "look the moon is kind of fuzzy".  Which he often says in this circumstance.  When we agreed he said.  "when we were watching fireworks in Charlevoix before  when the full moon was fuzzy"   (I knew exactly what he was talking about because he's talked of it before.  I believe it was the first experience he ever had going to fireworks)  Todd asked, "yea, how old were you?"  Daniel answered, "I was three".  Not very shocking, but he is right.  He was three years old.  I remember because we were at a different beach than we usually go to, and Zachary was an infant, which puts Daniel at 3.  It will never cease to amaze me the way he has information filed up there. 

"fuzzy moon" over Round Lake

 I can't even remember the other context, but when he brought up another vacation memory Todd asked "how old were you then?"  To which Daniel answered "I was 10".  And I can only say, I'm SURE he is right.  Some day I hope we can figure out or at least have a better incite into how his mind works!  It never ceases to amaze me!

We Can't Control the Weather....

Our vacation continued with beautiful weather in Charlevoix.  We spent the next several days, going to the beach, taking boat rides, grilling amazingly fresh fish, and in the evenings heading downtown to listen to music in the open band shell in the park.  This is actually my favorite part of our weeks there.  It has the wonderful small town feel, it's relaxing and, well, sort of perfect. 

Daniel and I at the bandshell with Round Lake in the background

The boys anxiously await Thursday.  Thursday is THE day for them.  It is "arm band" day.  The carnival comes to town during this week of Venetian festival and Thursdays you can buy an arm band for $15 and ride as much as you want ALL DAY long.  It is highly anticipated, year in and year out.  The carnival starts setting up earlier in the week, of course, and there are regular "checks" on their progress.  Zachary and his cousins would ride down on their bikes and come back to report what rides where being put together.  "They have Crazy Dance again", they "don't have Gravitron! why not?!" It's ENDLESS.  As a parent I am not a fan of the carnival.  It usually means a hot day, in a small area, with way too many people amongst well, a carnival....I get it though.  I would have been the same way.  The positive is I don't have to RIDE (most of the time) and the kids can do it together. 

I have had several comments from those who have seen my pictures that they are surprised Daniel enjoys these rides.  I would be interested to know from other parents if their autistic children feel the same.  Daniel LOVES the spinning rides and roller coasters (as long as they don't go upside down).  As soon as they start something stimulates in his brain and he chats and laughs and talks the whole time.  It's the same as when he is swinging.  It's fascinating.

The day started ok.  It was a very cloudy day, not big white fluffy clouds, but grey fuller coverage.  This is ideal for ME in that it isn't so hot hanging at the dirty carnival all day, (especially since we had a very late adult night out the night before!) but for Daniel it means one thing THREAT OF RAIN.   He gets very agitated with this especially when there is something important (to him) going on.  His entire body is on high alert and concerned about the rain.  He talks about it and perseverates about it. all. day. long.  He asks "is it going to rain?" approximately 457,000 times.  Then usually answers himself with our standard parental answer, a whimsical sounding, "we can't control the weather......" .  This answer started coming from us years ago when he would be crying and screaming at us to "MAKE IT STOP RAINING!"  As exhausted, frustrated parents we would try to continue our good natured attitude with answers that invoke the feeling of "everythings ok", even when it clearly ISN'T.  We try to let him know things will happen again, and you can get another chance. It's a tough sell to someone on the spectrum. Although Daniel handled it very well the tubing day (see previous post).  That was raining all day, but you see, the difference is, he didn't know what he might be missing because he had never done it before.  In terms of the carnival, he looks forward to it ALL year.  He is still talking about "Arnold Amusements Inc" today.  (possibly the only child who takes that away from the day). 

We finally start walking down to the carnival with Daniel skipping ahead singing "Hi diddly dee, an actor's life for me".......Even if your child isn't obsessed with Pinocchio like mine, you might remember that song from the movie.  If so, you remember this is when Pinocchio is merrily headed off to school. . . right before disaster strikes.  ahhhh. foreshadowing.  I should have seen it.  But then "I can't control the weather" so what was I to do?  So I've given away where this is headed.  Cloud covered + high anticipation = disaster.  You got it. 

The four boys (Daniel, Zachary, and southern cousins Connor and Clayton) were enjoying the carnival.  They were riding The Tornado:

                                                                          Crazy Dance

and the classic Tilt a Whirl

And then I felt it.  A rain drop. Just one or two.  It was honestly barely spitting.  It wasn't enough to end anything.  The boys were back in line for The Tornado and the stress level was building. At least for Daniel and I.    I was trying to talk him down and it seemed to be working.  They got on the ride and one thing lead to another and Daniel was starting to freak out just as the ride was starting.  I was yelling for him to relax as he was screaming at the other 3 boys (for basically breathing wrong) and he was pounding on the ride.  I was giving my best even mom glare, imploring him to relax and enjoy the ride, begging him with my eyes to see that it was ok.  He was still riding.  Hoping he would magically see that the only thing ending his day was HIM.  But he was gone.  He'd gone over the edge.  I felt hopeless.  Daniel had slipped away and I couldn't get him back.  Every time he came around his eyes were locked on mine.  He knew it too.  He'd lost control, threatened those around him and he had that look in his eye.  I couldn't even hear the madness going on around me anymore, Daniel and I were locked together, which probably stopped him from hitting himself or whoever else was in reach. 

When they exited the ride, Zachary was scared (he thought he was going to get punched) and embarrassed (in front of his cousins and the rest of the carnival) and the damper on the day was much more than a few rain clouds.  I told Daniel he was leaving.  Which only escalates him, but he couldn't handle it anymore.  Todd pulled him away while Zachary sobbed in my arms.  I told Zachary and the cousins that they could stay and all I got was a sad, pathetic, "we are just going to go home now".  Which absolutely killed me.  Daniel's meltdown had taken them all so far down that they didn't even care anymore.  It broke my heart. into. a. million. pieces.  Suddenly I wanted to stay at the carnival and have them enjoy it more than anyone else.  But it wasn't meant to be. We all walked home.  This time with no singing, no excitement.  Just me fighting back my own tears for the disappointed kids.  Including Daniel.  Usually my posts are very upbeat and show the brighter side, but to have a bright side, usually there is a dark side looming about.  Thursday we had it. 

Pure Michigan

We are back from 9 days in northern Michigan. We go every year, sometimes many times a year and I am always a bit surprised at the beauty. It seems to sneak up on me time and time again and take my breath away. One of my friends was making fun of the "Pure Michigan" ads on TV. But I get it. Especially in northern Michigan. It is pure and lovely. I am usually feeling a bit cranky before we head up there. I don't know if it's the packing or the driving or just negativity, but as soon as I sit down on that beach along the Lake Michigan shoreline, I am once again sucked in to it's beauty. I'm relaxing and wouldn't want to be anywhere else. Can you blame me? Look at this vision!!

I'll start our journey on the blog after we spent our first days on Lake Michigan beach. We had made plans to go to our friends lake house about 40 minutes east of us on a lake that I have heard about a lot but never been to. It is a very large inland lake (4th largest in MI) that does in fact make connections all the way out to Lake Huron. Daniel was very unsure of this day trip since we have never ever gone there before. He does not like to leave the area and perseverates about "how far" things are and becomes quite agitated. I, as usual, like to push him to show him that IT'S OK! It won't kill you AND you might even (gasp) have fun!!

We were not starting out very well, since not only were we making him leave the Charlevoix area, but it was also very dark skies, and even raining. These two things have a tendency to rock Daniel's world (more later in the week on this). There is nothing worse to him than a threatening sky. I don't know if it's the thought of plans changing, the barometer changing or a combination of both. What I do know is he's MAD. So we started this adventure with two very big strikes against us.

We arrived at our friends (fantastic!) house in the rain. We came prepared with movies, portable DVD players and lots of snacks. Everyone actually settled in quite nicely despite the rain. They were watching the radar closely looking for breaks in the weather so we could go out in the boat. The plan was to take my kids tubing for the first time ever. My thought was that Daniel would love this as he loves speed, he loves roller coasters, he loves water. It seemed to make sense. My only hesitation was that when we go out in his Grandpa's boat he does not love the spray off the water. Sometimes it's ok and sometimes it isn't. Would being on a tube in the water make the spray ok? Or would it make him really angry? Only a trial run would tell us the answer to that.

Zachary and his friend (a girl from his class) went first. This way Daniel could see how it works. Daniel immediately had to move to a different seat in the boat so he "wouldn't get sprayed". This made me nervous as he was not relaxing into the trip. Zachary was on for quite a while, his friend fell off once (which was probably a good thing for me) We took the opportunity to show Daniel it was ok if you fell off. You just climb back on!

Here are Zachary and his friend having a great time!!!

We decided it was time for our turn. We swapped places and Daniel and I were ready to go. One of the instructions was to "lean back when you start". As you can see in these pictures, he got the "lean back" part, but seemed not to understand that "when you start" was only at the beginning. He was leaning back the whole time. It doesn't take a detective for you to see by the look on his face what he thought of the experience. . .

His face and his entire being was PURE JOY. The whole time. He laughed and laughed. That laughter that is contagious, because it comes from a place of such honesty. It was contagious because I couldn't stop laughing the whole time either. There is nothing more wonderful as a parent as knowing your child is having the best time of their life and you helped them experience it! Pure Michigan. Pure Joy! Thanks for the day to our wonderful friends!!