Thursday, August 5, 2010

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?

Tuesday, August 3, 2010

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.

Saturday, July 31, 2010

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!

Thursday, July 29, 2010

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. 

Tuesday, July 27, 2010

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!!

Thursday, July 15, 2010

It's Worth It

I have been so lax in my blogging!! Summers tend to whirl by so quickly I find myself in September wondering what just happened. We have been spending our days with friends, at the local pool, traveling for weekends throughout the gorgeous state of Michigan and of course with Zachary's baseball. Todd was the coach this year and that has also kept us busy. Daniel is pretty good about the games, but this season we finally figured out that it is helpful for him to bring his Ipod along to the games. That way he can listen to music that he loves and not be scared by sudden cheers from the "crowd" of people. It works. The down side is it keeps him more separated from people who he normally would engage with, but at least it keeps him from getting angry.

We had our end of the year baseball party at our home on Monday. 10 families RSVP'd "yes" to it, which brought the total number of people to 40 for hamburgers and hot dogs on the grill. A number that I initially found a bit staggering! The good news for us was we had a game at 7:00 so everyone had a time they HAD to leave by. We prepped Daniel for this many times. I knew it would be crazy here, but he had his room to escape to if he needed to, which he did. He of course came out for FOOD, because he is 13 (14 this fall) and if you all have a teenage boy you know that there is no such thing as "enough" food. He is always hungry. Always. He has grown 4 inches this year and is showing no sign of stopping. The Keens (shoes) I bought him at the beginning of summer are size 13 men's. While these are expensive, I decided they served multiple functions, they can go in the water, so they are good for being on a boat, on the beach, riding a bike or walking around. They have good support, which he needs too.

Back to the party. . . at the end of the party, it got a bit hectic as everyone was trying to round up their children to get to the game. Daniel, of course, was in the middle of it all and watching it and feeling a bit overwhelmed. I wish he could know to pull himself out of these situations, but he can't quiet do it. I could see him escalating but I was also trying to be the hostess and say thanks for coming to everyone and see you at the game and keep my own ball player moving. One of the moms was being particularly "challenged" by her son, who was not listening and trying to shove as much sugar into his body as humanly possible before leaving!! :) She was talking to him in the stern mom voice, not yelling, and he was not responding. Daniel was watching all of this with the utmost fascination. She finally said to her son "look at my face and my look, what do you think it means?" (I paraphrase, but it's close) and DANIEL said, "she's feeling embarrassed of how he's acting". I completely (inappropriately) laughed out loud. But he was right! She was angry with him, but she was probably mostly embarrassed that he was not listening to her AT ALL. I looked at my friend Jodi (who is a follower here) and said "WOW, that was a major social cue he just picked up on!" I was totally impressed.

I had to apologize to the other mom for laughing, but if DANIEL can pick up exactly what she was thinking and trying to communicate, I think it's fair to say that her child knew exactly also, but was trying to ignore her. I see over and over that Daniel is very intrigued when children are ignoring their parents and it makes me cringe a bit, because I think that possibly he doesn't know that it's possible to just say no! I really don't want that to start!! I have heard him say "did he just say "no" to her?"..... to which I respond "he did, but that is not ok to do to his mother!!" I have to keep my creds as a parent!

Daniel's social group has worked a lot on facial expressions. They look at pictures of situations and interpret how a person is feeling. I guess, it is paying off. Which is again, just in time. Whenever I start thinking that I'm going to take a break from this therapy something generalizes to our life like the one that took place in my kitchen and I realize, once again, it's worth it.

Thursday, June 17, 2010

An Exclamation Point!

We are in the first week of summer vacation. This is always a very tough week for Daniel and I BOTH. He is transitioning to a completely different schedule (or lack thereof) and well, so am I. We'll start with me. I just went from exercising for myself almost daily with friends, to... not. I went from working and going into an office when I chose to, to... not. I went from quiet most of the day to....not. I now have to adjust to the constant chatter of Daniel and to Zachary wondering "what's next". I get sensory overloaded. I never used to know what that meant, but life with an autistic child has given me great incite to myself. I need the quiet. Lots of parents are going through the same thing I realize but don't have the label for it. It takes me a few weeks to not want to scream at everyone to stop talking. I said "want", I don't actually do it. As the non autistic person in this story, I have the strength (most of the time) to "keep it in my head".

Daniel struggles. I remember the days when it would take a good 3 weeks until he'd transition to the summer schedule. Just when I'd think I couldn't take it, he'd settle in. That time frame has shortened, but the days he struggles, he really struggles. We spent Monday and Tuesday this week with Daniel yelling for a minimum of 2 hours. Slamming doors. Just being angry. When I very very nicely gave him suggestions of things we could do together or he could do on his own. He yelled "I CAN'T TELL YOU TO SHUT UP"....well, I thought, I think you just did....

The weather was sketchy. When school went away, so did the sun. It was bordering on chilly and the sky was threatening rain. The pool was out. I have one child that you have to fight with to get him to do anything and another who spends 4 hours at a basketball camp and then wants to know what's next? Opposites. It's hard for me to balance. I always figure it out. But for some reason it always takes me a while.

Yesterday, Daniel, told me "I won't be angry today" and it was actually much much better. I don't know which came first, if he made a conscious effort to not be angry or if it was his way of telling me he was feeling a bit better. Either way. It made me happy and more importantly,he seemed to feel a less stressed.

This morning I saw a missed text from my neighbor. Her boys are Daniel's age and twins. They walked home with Daniel this year and have been pretty inclusive with Daniel. They are used to him and Daniel's constant scripting. The Sesame Street talk doesn't seem to faze them. In fact they have reported an amazement of Daniel's vast knowledge of every single character. Their mom called to tell me that the boys were having some kids over tonight to sit around the new fire pit, roast marshmallows, make s'mores and "hang out" with about 9 kids. They wanted to invite Daniel. There would be loud music, but they didn't think that would be a big deal, as they've seen him at the "activity nights" at school and at another neighbors garage dance party. He's good with it. The concern seemed to be it might be a long time for Daniel. The mom wanted to make sure Daniel was good around fire. He is. He LOVES a fire. It is very calming for him. In fact we converted our wood burning fireplace to gas this year so we could turn it on at will. He loves it.

The only other concern of the boys is that neither their mom nor myself be anywhere around them. They know I'm always lurking around in these situations. I have agreed to stay away. The only other concern is it will be a long evening, but they live across the street, I am pretty sure when he's "done" whether it's an hour or two, he will be thrilled to be included and the time will be well spent. I gave the thumbs up to mom, and she said she'd have one of the boys text Daniel an invite, since that's how everyone was invited. . . Yes you heard me. During my absence from blogging Daniel got a cell phone. The time had come. With him getting more independence I felt better that he could contact me if he needed to. I also wonder if he can connect to some of his peers this way. Let's face it a one sentence text with time to process the information has to be easier for Daniel than a face to face conversation. It's worth a try.

I went back to making my breakfast and sort of forgot about what was going on. I didn't expect a teenage boy to even be up at that hour, let alone to text Daniel quickly. As I was eating my eggs, Daniel came bursting through the door from the basement. He said very excitedly, and slightly out of breath, "I have to get dressed!!" I was somewhat confused, but noticed him clutching his cell phone in his hand. I asked him why he needed to get dressed and he just held out his phone to me. I asked if he had received a text and he said "yes". I took the phone and read it. It said, "Hey Daniel, this is _________ and I was wondering if you would like to come over at 7:30 for some s'mores and brownies" (they SO have Daniel figured out!)

I explained that it was at 7:30 tonight, and he was in fact, not late. He relaxed a bit and said to me "I want to go". I told him he should text him back and let him know. Daniel took his phone and typed out "I would like to come over tonight thank you" Then he looked up at me and very sweetly asked, "how do I put exclamation points on this?" I think that I melted. Right then and there. He wanted to express his excitement. I could tell he was excited, but I don't think many other people would have figured that out from how he looked. But in that one sentence, he wanted to show his enthusiasm. With an exclamation point. How. Cool. I showed him how to do it, and he sent it off. He was out on the trampoline later, while I was weeding. He said "I'm so happy I feel like dancing". His funk is gone. His anger has dissipated. With the invitation from two boys who thought to include him. They flipped his switch as we like to say. I'm sure they have no idea how much it meant to him. But for us, it was !

Friday, April 30, 2010

What the warm days bring....

I have been finding it more and more difficult to find time to blog. I have things that come up and find myself "writing" in my head, but don't actually get it onto the computer. My work as an advocate has picked up, tis the season, IEP season that is. I know the feeling all too well. Spring always seems to bring up my own anxieties. It may not even be about school, but there always seems to be a combination of stresses that bring out mini panic attacks.

I love the beauty of these spring days, the warm sun finally showing itself after a long winter. But those high 60 degree days with spring flowers blooming also remind me of how much my mother loved those days. It was during these kind of spring days that we also found ourselves in the hospital with her. It was 1993, the year that she died. I remember one of the days my husband and I left the hospital for a few hours. We were driving through the beautiful neighborhood surrounding Blodgett hospital, the sunlight flickering through the trees. The wide boulevard with huge homes flanking either side. It was jarring after spending days and nights at a vigil by my mothers bedside. I already knew that she wasn't really with us anymore, but it wasn't quite "over". I was in a haze from lack of sleep, only 25 years old, and knowing that this would be last time of seeing my mom who was only 20 years older than me. I'm an only child so we had a particularly close relationship. I remember the feeling more than anything. The confusion over feeling the sunshine, the warmth, the rebirth of trees and flowers, but the loss of my mother at the same time. I said aloud, "this is her favorite kind of day" while looking out the car window. Words that I think every year and cause the heaviness in my chest. The toxic combination of loss and panic and sadness, that I often wonder if it will ever go away. It seems to be compounded by the stress of planning for another year of Daniel's school, the crazy schedule at the end of both children's school year, and the promise of summer. What I can't figure out is why I don't see it coming. What can I do to prepare myself?

I have finally thrown down the gauntlet and started exercising again. Not only have I been carrying around an extra 15 pounds, but the feelings that I carry start causing pain in stress points in my back and shoulders. I remembered back to 5 years ago and a Dr. had talked about fibromyalgia possibly beginning. He talked about exercise being a great way to combat the stress and pain. I jumped into it completely and started to feel better, physically, than I had in a long time. When I exercise I do it all or nothing, much like everything else for me. I don't have much middle ground. I can already feel some of the pain lifting from my back. I need to keep it up, but it is definitely taking away from other things, like writing that are also therapeutic for me. Today I chose to stay home from exercise and write this. I didn't have any idea what I would write about when I sat down, sometimes I'm surprised at what I start typing. The exercise needs to continue. It is a great stress reliever.

Writing this also helped me come to a conclusion about summer. Yesterday was the last day of Daniel's Kinesiology swim class. He had a wonderful coach this semester. J, I'll call him. He taught Daniel the breast stroke, they swam LAPS! It's so good for Daniel to get that physical exercise. With the extra anxieties he has, I know that we need to continue the exercise for him too. Maybe it will help him even out his system also. But we all know how difficult it is to get our kids to do this sort of physical exertion. I'm thankful that swimming is a way for Daniel to do this. After swimming yesterday, J, offered to continue to work with Daniel through the summer, either swimming or LIFTING WEIGHTS! My first word was "interesting". He thinks it would be really beneficial for Daniel. His body is so huge and strong, but he could use more toning. I can see how it would help his swimming and possibly help him get more in touch with his body. If anyone could do it, it would be J. They really bonded. After writing this I decided that I'm definitely going to take him up on his offer. I was explaining to Todd and Zachary last night what J's idea was. Zachary looked at me and said, "that's what we need, Daniel to be STRONGER, if he hit me he'd kill me". He was joking, sort of. He doesn't hit Zachary but he will scare him and be aggressive. Zachary noted that Daniel hit his own leg in the car yesterday so hard he yelled out "OUCH!!" afterward. What would happen? Would the added strength be a positive or a negative? Would it help his channel some of his own discomfort and anxiety or make him even stronger and less able to judge his own strength? As usual, I won't know until I do it. That's the way it is with everyone, isn't it?

I can only look forward to summer, hope our plans for next year work out, that Zachary's changing schools next year will be all that he hopes it will be. That the transition into summer will slowly take away the heaviness in my chest. That the spring rebirth continues to bring a new year of hope.

Friday, April 16, 2010

It's the Little Things

Thursdays tend to be hectic for us, schedule wise. Yesterday didn't change any of that. But at the end of the day I had one of those moments that makes you remember just how far you have come. It astounded me.

Our usual schedule is this: Before my first stop I pack up two swimming bags, one for each boy, complete with towel, suit and goggles. I make a snack for each of them and bring a drink. Pile it all into the car and go pickup Daniel in my car at his bus stop. Once I have him, I drive to Zachary's school. Then we drive to MSU to Jenison Fieldhouse for Daniel's swimming. Sometimes my husband picks up Zachary part way through Daniel's swim or sometimes I leave mid swim drop Zachary off at a different location and rush back to get Daniel before he finishes. Then when all is said and done we go to dinner. It is a carefully choreographed dance that needs precision timing to pull off. But it works for us.

I was tied up at the post office, literally. I could not get out of the parking lot. (Happy tax day!) I admit this is my own fault by waiting until this time to put my state taxes in the mail, but it is what it is. I was panicking thinking I wouldn't get to the bus stop on time. I barely made it. Daniel got in my car, I asked how his day went and he said very calmly and matter of factly, "I was a little stressed in computers today."

me- "Oh, I'm sorry, what made you stressed?"

D- "something disappeared from my screen" (still calm and not reliving it before my eyes like used to happen. He'd be back in the moment and be reliving it. I believe it has to do with how his memory works.

me- "I know how frustrating that is, I get upset when that happens too."

And that was it. We drove to Z's school and got in "the line". At some point Daniel usually starts escalating and worrying that he'll be "late for swimming". We do this EVERY week and every week he worries and frets and stresses about how many cars are in line. He began again and I reminded him (as always) that we don't have to be to Jenison until 4:00 and we have at LEAST 20 minutes. I remind him to look at the clock. But this week, he calmed down.

Next phase, we arrived at Jenison fieldhouse and waited for his MSU student to arrive. And we waited. And waited. I asked the professor if he had heard from Daniel's guy, he had not. Daniel was pretty patient. He looked at me and said, "is Josh sick?" Which was a great question. I said I wasn't sure and how about he go change and wait on the bench in the pool area. (this has never happened before) We went to the pool. I was chatting with my friend and looked down (I'm in a balcony) and Daniel was quietly sitting on the bench, by himself, holding his goggles, waiting. It was 4:15 by this time. No Josh. I yelled down to D and told him he was doing a great job waiting. Then I yelled to the teaching assistant and suggested that maybe???!?! he wasn't coming and to get Daniel in the pool with someone else. He did, although it took 5 more minutes.

It crossed my mind that many things had interrupted his schedule and now he'd be swimming with a different coach which would mean a different routine in the pool. I tucked that thought away and resumed my chatting and waited for the anxious yells to come. But they never did. Not once.

After swimming he came out dressed and said, "why didn't dad pick up Zachary?" who was standing next to me. I said Zachary was really tired and didn't feel great and was skipping swimming today. This alone, in the past, would have sent him through the roof. He would have cried and been "worried" and said he missed it etc etc. Nothing. We were walking to the car and he said, "now we are going to Spartys" a cony place Daniel loves, and I said, "nope we are going to Olgas that's where I told dad we'd meet him". Nothing. Just an "ok".

It was only then that I thought of the huge number of things that went "wrong" on that day. Previously any one of those changes would have set him off to the point that he would have had a terrible night and never recovered from it. But he endured all of them, in stride. These are the little things that make it so difficult for families with autism. Life happens. But when it does it can be so upsetting for our kids that they can't take it. He was having a good day, but I realized in that moment how far we have come. I was thankful that all of the work we've put into helping him deal with his days has paid off. We aren't done, but it was so satisfying to know that HE felt more relaxed and able to deal with the changes. The daily things we say to him to help him through the stress are working. He's maturing, he's dealing. It made for a pleasant day. It felt....normal. It was nice to flash back and see how far we had come, once again. It made me smile.

Sunday, April 11, 2010

Different not Less

Those are the words that rang throughout the new Temple Grandin movie currently playing on HBO. It is On Demand, if you have it, until May I believe. I will watch it again and again. I will show it to my 10 year old. Maybe even to Daniel if I can get him to watch part of it. That would be interesting. I have had the pleasure of meeting Temple Grandin once and watching her speak twice. For those of you who read me who do not have children on the spectrum I'll briefly explain, but I recommend you somehow watch the movie. If you are near me, come over we'll watch it together. But only if you don't mind me crying at odd times. I don't think the movie is sad at all, but it continuously moved me in ways that surprised me.

Temple is a woman with autism, obviously. Not Aspergers, autism. She is in her 60's now which puts her at a time growing up when no one really knew about autism. This makes her story even more powerful. They show Temple's mother (who I have also seen speak) being told it was mom's fault that her 4 year old wasn't speaking and wasn't bonding to other children. She is a very strong and smart woman but the fact that they all rose above this still amazes me. Temple now tours the world talking about her autism and because of her autism can tell you things about her childhood and the way her mind works that is FASCINATING. I have always been interested in her because she is so similar to Daniel. There are certainly areas that are different, but through the movie there were times when Todd and I would both start chuckling at the smallest thing because it was DANIEL. Or I would say what Temple would do next because I knew what Daniel would do. I can't wait to watch it again and again.

Todd and I both met Temple years ago. I'll guess 6 or 7 years ago. She was speaking in Ann Arbor and we drove over to see Temple in the morning and her mother in the afternoon. It was an amazing combination. The child's perspective in the am, the mother in the pm. We were sitting at a large round table as you are at most of these events. We were in the front. After Temple finished it was lunch time and she sat at our table since there was room available. Besides Todd and I everyone else at our table were "professionals". They all immediately started asking her questions. All at once. I remember thinking, what is wrong with you people? You know she has autism right? I use the sentence "I have met her" loosely, because she was sitting next to Todd and when all of the questions started she turned toward him to block out the clutter bombarding her and said, "what do you do for a living?" He answered, "I'm an engineer." Then everyone else was gone for her at that lunch. She talked to Todd the whole time. While everyone else made the mistake of overwhelming her sensory system, Todd was a life line. He was an engineer, she could talk about that. And they did. It makes me smile just thinking about it. No one else was very happy, but really, it was there fault!

Back to the movie. I thought Claire Danes did a wonderful job portraying Temple. The few times I've seen her, her accent, her movements were all there. When Temple would come across something that was upsetting to her or would set her off (seemingly for "no reason" to an outsider), they would flash to the pictures she was seeing in her mind as a way of explanation. It was really well done.

Temple has her Ph.d in Animal Science. She has designed over half of the systems used for cattle in slaughter houses in North America. While this seems an unlikely topic for a movie, I found it very interesting. She loves animals and is completely in tune to them, which they show throughout the movie. It is partially that love that inspires her find a more humane way for them to be slaughtered. Her rationale is they are here, they will be food and we should respect them for it. She does yet she also has the disconnect of the cattles final outcome. Her respect of animals reminds me so much of Daniel. There is a scene where she walks into a horse stall, the horse is going crazy, rearing up and very dangerous. Temple walks up to it and calms it down. She walks into cattle and sees how they move. She lays in the middle of the cattle looking toward the sky like Daniel does laying on the trampoline or sidewalk staring at the sky. She brings calmness to the animals and they return the favor. I have seen Daniel do the same thing with animals. He has no fear, just calm understanding. Lucky for Temple she spent summers at her aunt's farm and this helped her tremendously. Watch the movie!

Most of all, when Temple speaks of the things her mother did for her that changed the course of her life, (not institutionalizing her as recommended, for one) my heart pulled. She knew that had her mom listened to the Dr's her world would have been totally different, but she had never expressed that to her mom. Instead she has a doctorate and helps people all over the world with her public speaking and her books. I had an experience last week talking to a mother for my job that showed me with a few changes in fate how different Daniel's life could be. I am working as an advocate and this woman's story tore me apart. I felt like her son and mine were so similar and yet the point he was at in comparison to Daniel's was very difficult for me to hear. I cried when I hung up the phone. I cried for the mom, who was at a loss of what to do, and frustrated with her school system. I cried for the son, who is being cheated from his potential. I cried for our systems that are still in place in 2010. Temple, born August 1947 (the same year as my parents) somehow overcame that, but we still have some of the same crap going on today. There are still some schools who don't know how to handle the children who are different. Different not less. The children aren't incapable. You just have to take the time to understand them. Figure out what makes them tick. People did that for Temple. Her mom, her aunt and a teacher and mentor. We have given Daniel these opportunities and he has many many people in the schools that know what he can do. It was hard for me to see the similarities and the differences. I guess that was why the movie was emotional for me. I could see the differences but also the similarities with Temple and Daniel. It gave me hope. It also tore me up. But the message that our kids are Different not less, is the most important thing to draw from it. Please watch it and give me your feedback.

Thursday, April 1, 2010

Unexplainable Moment

Setting: an evening in Michigan. The first day in the 70's. The kids played outside all evening. Things are winding down and Daniel is in his bedroom, on the 2nd floor playing with his things and going through his nightly ritual. Zachary is getting ready to go to his room. We are in the family room on the 1st floor. He comes to me and says he doesn't like his book he is reading. He is looking for something different. Todd suggests he look for something in Daniel's room. I was a bit hesitant. Daniel does not like books out of order in his room. In fact he knows if anything is out of place, despite the huge amount of things arranged in there. Instead I asked Zachary if he'd tell Daniel for me to get into the shower and we'd figure out something else.

Zachary goes upstairs, delivers the message and goes to his room. Daniel gathers up his things and on the way to the shower, opens the door to Zachary's room.

Daniel- "Zachary, I am taking a shower, DO NOT GO INTO MY ROOM."

Zachary runs down the stairs to me with an amazed look on his face.

Zachary- "mom, you won't believe this, I think Daniel read my mind. He has never told me to stay out of his room, it's like he KNEW that I wanted a book out of there."

I have to say, it kind of gives me chills. I can't imagine he heard the conversation, he was upstairs on the other end of the house. The vents in that area don't lead to his room. Zachary was stunned, amazed and confused....what do you think?

Tuesday, March 23, 2010

The Good, The Bad, and the Ugly

I seem to barely be keeping my head above water. For me stress seems to come with MIGRAINES. So that is one thing I've been fighting. Migraines they make me lose entire days of time, which puts me further behind, which makes me more stressed. You see my problem here. . . So here's a little update of some good, and not so good things from the past week.

Good: Daniel's MEAP scores came in the mail. MEAP is the statewide achievement test here in Michigan that everyone takes (except for you IEP savvy people who take the MIAccess,) Daniel took the MEAP only in math this year, because we thought that would be the most appropriate test for him. Testing him is not always easy, and he gets accommodations for it, like more time, a different location etc (write those in the IEP folks!). But still he usually doesn't do well. I know that the testing doesn't always show his true levels of achievement, but the scores can be gut wrenching to see. They usually get glanced at and filed away, far away, so I don't have to see them. It's easier to go to my happy place of denial that way. But not this year! He went from a 4 (not proficient) last year to a 2 (proficient for 7th graders!) this year. This is in comparison to all 7th graders in Michigan!

Bad: In Daniel's Resource English class there has been three parapros available to assist a class with very high needs. One was just pulled from the class to be put into another class, and it was Daniel's long time parapro.

Good: I had a very good conversation with the special ed. director. This was after talking to teachers, vice principals and principals. She understands my concerns and has assured me that if Daniel starts showing frustration and falling behind (after making so much progress!) that they will reassess the situation. I have known her a long time and I feel confident this is true.

Bad: Daniel was screaming on the bus last Wednesday and hitting himself because the natives (teens) were restless and acting like caged animals. i.e. hanging out the windows, arms flailing around similar to chimps at the zoo reaching out through the bars. This, not too surprisingly, stressed Daniel out. The bus driver was trying to get the kids under control. They wouldn't listen (and refused to raise the windows?!) which made Daniel even more upset. The vice principal was called out and he had to RIDE THE BUS WITH THE KIDS. Daniel recovered part way home since the bus was SILENT (a "request" from the vice principal). I then received an email explaining the situation from the vice principal.

Good: This lead to a brain storming session about giving Daniel something to concentrate on while on the bus. If he is in noisy situations (like a sporting event his brother is participating in) it helps for him to have something else to concentrate on. Like his "DS" (Nintendo DS). When I asked him what would help him on the bus he answered "my DS" which was immediately shot down by me. I fear him losing it or kids would want to see what he is doing and hang over his shoulder. This would NOT make him happy. During my conversation with the special ed director. She immediately offered up an MP3 player for him to borrow. We loaded it with music from Fantasia and so far, he is ONE HAPPY BOY! It has worked like a charm! It is very relaxing for him and the music makes him happy. Now he can ignore the caged animals if he so desires...

Bad: A friend let me know that her daughter reported that she witnessed some kids harassing Daniel in the hall and frustrating him to the point of him getting upset.

Good: She stepped in and stood up for Daniel

Bad: They didn't listen

Good: This led to topic number 3 with the Special Ed director and she was very upset about it. It seems that is it is being taken very very seriously by the school and we are working on it. When I had dinner alone with Daniel last Thursday we had a conversation about his morning routine. (an entire conversation!) When I got to the spot where I thought the harassing was occurring I asked him if people ever bother him. His answer. "Sometimes". Which makes me think that it happens with some regularity.

Bad: While talking to the special ed director about this I was crying the ENTIRE time. In my defense, I was also in the middle of a migraine day and was not handling anything very well. It was an ugly cry too. Not a few tears, but all out crying.

Good: She was extremely kind, especially when I asked if she could please just ignore my crying and continue on with the conversation. She was very sympathetic. We have known each other for many years (long before she became our special ed. director.) I have always felt a connection to her and I think that is reciprocated. She immediately called the social worker at the middle school to get to the bottom of this issue and delivered the MP3 player to come home the same day!
I talked through this with my friend afterward. (crying again). This is the friend who's daughter stood up for Daniel to several kids. This girl has the self image and strength as a 7th grader to do what is right, for someone she cares about. Not only is she amazing, but her parents are too, for raising such a child. I am starting to sound like a broken record but I am very lucky to have them in our lives. As I was crying to her on the phone, and complaining that I can't stop crying when talking to someone like the special ed. director about an emotional issue, or in a meeting in front of people and she said something that made me pause. I'm sure I will never ever forget it . She said, "You cry the tears that he can't cry for himself and you get the job done and make it a better world for him."

Wow. What a powerful statement. I said, "that's beautiful and I'm stealing it from you". Which I am! That is honestly the most lovely thing I've ever heard anyone say. I wrote it down immediately so I'd get it right. I'm glad I did because I only remembered the "you cry the tears that he can't cry for himself part". I had completely forgotten the last half about making it a better place for him. I guess I had forgotten that part, because in terms of that, what choice do we have as parents? In my opinion, that is why we are here, and I know that I will always do that. Sometimes when we are having a hard time with Daniel, I think back to about 5 days after he was born. He was a very sick little boy and was in an incubator for several days receiving oxygen and medicine. It had been a long week, but we knew at that point he was in the clear and recovering. I was sitting in my special room at the hospital for mom's whose children are sick and still admitted after the mom's are released. They give a bed to you and you can stay in the hospital to be close to your baby. I was holding him in that room and looking into his face and I clearly remember promising him that I would be there for him always, I would be there to protect him and help him with everything, that I would do whatever necessary to help him. It was a different feeling than with my other son. It is almost like I knew that the hard part wasn't over and it was going to be a long long road with Daniel. But I have kept my promise to him from that day. I always always will, through the good, the bad and the ugly.

Tuesday, March 16, 2010

Spring in Michigan

We can feel it. The promise of green leaves, flowers and sunshine. After a long cold winter and a very snowy February, spring is in the air. We went from very cold temperatures to the 50's everyday. Which, if you live in Michigan, sends people into a spring frenzy. Some people stopped wearing coats when it was 48 degrees! I say SOME because I do not fall into that category. I am the person who is shivering when it is 75 degrees. Nevertheless, the sun is welcomed with open arms.

Last week the warmer temperatures fell in a week that gave us two half days and one full day off of school. On Tuesday, the first half day of the week, I was trying to paint my laundry room in preparation for a delivery of a new washer and dryer (yeah me!) Only to be met with requests to get the bikes down (they are hanging upside down from the ceiling of the garage by the way, not an easy task). This then leads to "my tires need air" and "can you come on a bike ride". My painting stopped needless to say....

Daniel went on at least 5 bike rides last week. He whips around our neighborhood a MILLION miles per hour. Zachary can't keep up! And at one point when Daniel went FLYING over a rogue patch of ice Zachary reports that he was fearful of Daniel wiping out. Of course Daniel went over it without missing a beat and Zach slid and crashed only to have Daniel continue on at full tilt, with Zachary left yelling "WAIT, WAIT, WAIT!". The next time they went out I loaned Zach my Blackberry in case of any accidents. (yes, I know where that is leading....) Daniel was blissfully in heaven. I found myself thanking God for that Bike camp nearly two years ago. It totally changed our lives. Not only does Daniel get more exercise, but I think he feels ALIVE flying around the neighborhood at warp speed.

The feeling of spring continued last night after Daniel's group therapy of speech/social skills when he was feeling particularly anxious. He had worked really hard and kept all of his scripting in his head for an hour. He was upset at how difficult a game was (and the pace of others playing it). He kept it in. Then when we got into the car, he needed to get it OUT. We arrived at home and he had his usual chocolate chip cream on a regular cone (NOT SUGAR that would be unacceptable on so many levels to him) he requested to go on the trampoline for the first time of the year. In the spring it gets flooded in that part of our yard, but for the first time the ground wasn't under water. We gave him the green light.

Todd and I were watching him jump with joy (literally) on the trampoline. Flying through the air. It still calms him right down. (If you have a child with austims and you don't have a giant trampoline, I recommend you go out right now and BUY one). That anxiety was filtered through his legs and into the air instead of at a slamming bedroom door. It was exhilarating, even from the kitchen window. Then he did his next favorite thing after the jumping, he lays down and watches the clouds float overhead. What a relaxing and enjoyable feeling. To exert the frustration then lay down and watch the light clouds overhead. It relaxes me just thinking about it. That is the payoff in Michigan after a long winter. It makes us think of what is to come in the next months. The beautiful Michigan beaches, the Great Lakes, and for Daniel, laying on the trampoline at dusk and waiting for the bats to fly overhead as the sun drops below the horizon. I can hardly wait.

Wednesday, March 10, 2010


English Language Arts. Is it an art? Where does that come from? According to the American National Council of Teachers of English, the five strands of the Language arts are reading, writing, speaking, listening, and viewing (visual literacy). Put into perspective with a person with autism and the definition might was well read "NIGHTMARE".

I have heard the reports for years that Daniel's reading comprehension is at a 2nd grade level. His word recognition is always at least at grade level, sometimes higher. He has always been able to read the words, it's the understanding of the words that hasn't been so great. We have been focusing on Daniel's math for quite a while, he does better with one "push" at a time. The math has really clicked. He is working in a class that has a slower pace, but same content which is perfect for him. He is thriving. It is amazing. He is working independent much of the time and it is beautiful. He has A's. In PRE ALGEBRA. It is mind boggling. Now what? I say great, what about English? Will I ever be happy? There is always something to tackle. This 2nd grade comprehension really kills me. I mean how are you supposed to keep up with science when you can't understand the content of the language being thrown at you?

I have felt that he comprehends more than we know. Standard tests are, of course, not always the way to go with our kids. Daniel is in a resource English class this year. This is a new direction for him and for us. We really wanted to get him working on his comprehension to see what would happen. A lot of his academic goals are around ELA. I have been asking questions of the teachers and have been told, "he is fully participating, he is answering questions, he is "getting it"". How can that be when they are reading 7th and 8th grade books? I know he can read the words, but actually answering questions? That seems, well, unlikely. Don't get me wrong, I have confidence in his abilities, but it's going to take a while, right?

Last night I met with his case worker (who Daniel hugged upon their first meeting he loved her so much) and his English teacher along with yet another Michigan State Univ. intern. I love when the interns are at our meetings but wish I could crawl in their heads to see what they think of this crazy mom before them!? It seems that Daniel's most recent comprehension test put him at a 50% level for SEVENTH GRADE comprehension. Which I believe cute case worker said is average proficiency. 7th grade? That's the grade he's actually in! Is that possible? He has been tested other times this year and the last time it was at 6th grade. Now it's at 7th grade? She started at a 2nd grade level, he was at 90%, 3rd grade 80% + etc. It all made perfect sense, with each grade level up he went down slightly. BUT he is at a SEVENTH grade level. I have to keep repeating it to wrap my brain around it. They are using a different method of testing than they have in the past. It is more suited to him, and they think more accurate. We think that Daniel's verbal language difficulties have prevented him from showing us what he knows. This is not earth shattering, we knew that on some level. But I didn't expect that. Not at all. How incredible.

I was so happy. I am so happy. But as I think back and realize I didn't show it at all. They must think I'm an ice queen! But part of me wasn't um, well, comprehending the whole thing. His ELA teacher said, "I know you are concerned but he's doing incredibly well". She must be thinking I'm crazy since she has seen all of this growth. They ask him a question, he answers, (correctly and appropriately) I think she must be wondering what I'm concerned about. So I then explained that Daniel has been (on paper anyway) at the same reading level for freakin' ever. When he started ppi (pre primary impaired) (preschool for those with special needs) after the first day the teacher said, "can he read?" and I was all,"yeah". Completely oblivious to the fact that not every 4 year old can pick up a book and just read it. He'd been doing that for over a year at that point. I didn't know at the time that this was called Hyperlexia. The linked site defines it as a "precocious ability to read words far beyond what would be expected at an early age and/or a fascination with letters and numbers. These children have barriers with language acquisition and communication."....later it goes on to say, "Hyperlexic children follow a similar pattern of development. First words developed about 12 - 18 months, but approximately half of the children lose gained words and do not begin to regain them until after age two." It goes on to talk about how language is primarily echoalic and "chunks" and even whole conversations may be used in conversations. This is exactly what Daniel does. In fact the above all sounds exactly like they are speaking of him.

Speaking with my friend (thanks Amy!) I realize that my lack of enthusiasm regarding Daniel's excellent news, and my constant "what should we focus on next" is pretty much a self defense. I am protecting myself from celebrating because I know very easily today I could get a call that Daniel has banged his head so hard on a wall that he cut himself, or that he because so frustrated because someone did something like walk out of a room. I take my successes as I do with the frustrations, with a grain of salt and hopefully with a little tequila ;)

I am thrilled with his progress and I don't take it for granted for one second because I know there are many families who will not get this fabulous news. Because Daniel is who he is, we can continue to push him forward. He can slowly emerge from his shell. We are seeing a crack in that shell. I didn't know if I ever would. I am so proud of him. He is an amazing child.

Friday, March 5, 2010

The Conversation

Scene: A cold Monday evening in Michigan. Daniel's weekly group session. His therapist was working on conversations between the boys. Daniel is quite a bit older than the other boys but his speech is much more impaired than theirs. Despite their young age (and Daniel's giant body in very small chairs) their speech helps pull him "up", in my humble opinion. The therapist sets up a conversation between Daniel and a boy I'll call Sam. The subject; Mackinac Island, Michigan. There is more about this magical place here. The therapist has helped them with canned beginnings and transitions, well for years in Daniel's case. I was listening to this over a speaker while in the waiting room, I could not see them. I also do not claim to have 100% recall (as IF!) so let's just say the "spirit" of it is correct.

Daniel- Have you ever been to Mackinac Island Sam?

Sam- Yes, I have, have you ever been there Daniel?

D- Yes

(thought bubbles over their heads)
what's next??
do I continue?
when will it be 6:30?

D- There is a Grand Hotel there. Have you ever stayed in the Grand Hotel?

(are we seeing the scripted parts? and transitions?)

S- No, I've never stayed there, have you?

D- Nah.

S- I've ridden bikes all around the island. Have you?

D- No, I rode on a carriage ride. (thought bubble- it's a LOT less work that way)


D- Do you like the ferry?

S- What fairy, what do you mean? (this is an example of a huge problem with speech and conversations for those on the spectrum. Homophones are very confusing. I believe Sam was thinking of fairy of the Tinkerbell kind)

D- A ferry like the Arnold Transit Company. (this is seriously what he said!)

S- oooooohhhhhh.

D- Where did you sit? Do you like to sit on top?

S- Oh, I sat on top and I thought it was sort of creepy!

D- I sat on top. And I sat on the bottom, inside, when it was raining.

Then a lengthy conversation started about the seating on the ferry. By the windows, in chairs, outside, inside. I have honestly never heard such a long exchange. I never heard the therapist interrupt or interject anything. She might of been gesturing to continue, but she didn't say anything. By this time I was laughing out loud. Part of it was it the joy of hearing my oldest son, at age 13, engage in the longest conversation I've ever heard. Part of it was the autistic idiosyncrasies that were in there and were, in my opinion, adorable.

All parents "really" don't know if their child will grow up to get married, be able to hold down a job and live independently. Let's face it there are a lot of deadbeat 40 year olds out there letting mom still cook and clean for them. No one thinks that will happen to their child. But parents who's children are not special needs, do know that they can converse with their child. They know that their child will be able to appropriately express their needs. Those parents know that they will be able to talk to them about their hopes and dreams, and often take it for granted. We don't all get to do that. And when your child is particularly challenged in these areas, it's almost as you don't DARE to hope for it. You work at it, you try, you encourage. But if you hope too much, will it be more difficult if it doesn't happen? I suppose I try not to think about it. I am a "put one foot in front of the other" sort of girl. But in that dark, dank, depressing waiting room that evening, I was laughing and crying by myself. Then the therapist walked out at the end of the session to talk to me and her jaw was LITERALLY hanging open. She was shocked. And thrilled. And amazed. That is the really amazing thing about raising all kids. You never know. You really never do.

Friday, February 26, 2010

My "Hose" in Band

Yesterday morning I emerged from my meeting at the middle school a very happy mom. We all know that isn't always the case, but when it is, it feels good. Really really good.

Flashing back: when we were setting up Daniel's IEP and schedule last spring I was very focused on getting him para support during lunch. We had dropped it back in about 3rd grade when he sat with "his girls" in our safe little elementary school cafeteria. He continued to be independent during this time. We had had a few minor incidents over the years, but honestly, not much more than MOST kids experience. Middle school lunch sounded like a nightmare to me. It was a new huge place and he wouldn't know half of the kids. I wanted him to have support and also thought that the person with him, could help him find appropriate people to sit with and maybe even facilitate some conversations. I got what I asked for.

What I gave up was support in band. I know. Really? you ask? I know you are thinking I was nuts. Maybe I was, but I was blinded by the lunch room, and actually I had some good reasons for giving that up. One being that his para did not go into band with him in 6th grade. She would check in, she would go get him if he needed to leave, but really, he was pretty independent. So I went along with it. What I DIDN'T take into account was that band was going from 2x's per week to 5 x's per week. The size of the class doubled and they went from 1 percussionist to 4. Had I KNOWN that I wouldn't have made that decision. IEP tip #1: this is why it is a good thing to have the general ed teacher there when a decision is being made about a class. Had I heard that, I wouldn't have agreed to it. Hind site is 20/20.

Rolling forward. A few weeks ago the last thing happened. I keep calling it "the hose". What does a hose have to do with anything? Read on. My cousin and her husband live in a cute house. It is "cozy" and they bought it as a couple with no children. They now have 2 growing boys and a dog. There isn't much room left. The tightness of the space kept building and building. One day the husband bought a hose. He couldn't find a place to put it. There was not an inch to spare, he proclaimed, "that's it! we have to move!". Is the fact that you have a hose with no home a big deal? No. But it was all of the things leading up to it and the one thing that pushes you over the edge. For me I wrote a note in "the notebook" to Daniel's para asking what music they should be practicing at homeand she sent me back a list. I had NONE of the music at home. He'd (again) been practicing the wrong songs for over a week. That music was my hose. I snapped and said "that's it" we need some help. Was the fact that we didn't have the music a huge problem? Not really, but it pushed me over the edge.

I constructed a very long email, outlining all of the issues and problems Daniel has faced this year in band. Tip #2 a calm fact based email describing all of the difficulties he has had this year. I explained the ways we have tried to overcome those difficulties and how they haven't worked. I explained the impact to not only Daniel, but his peers in the class. I explained that it is no reflection on the teacher, she has done her best, but it's too much. Lastly, I asked them to consider giving him para support in this class. Calm, cool, emotionless facts explaining the problem in detail.

I am explaining these tips because I have been working as an advocate now for almost 4 months. The mistakethat I see parents make is that when "the hose" happens they fly off the handle and make a huge deal about "the hose" when it isn't the hose at ALL. This gets you no where with the school district. They'll tell you "it's just a hose".

The school district had someone collect data, there were discussions. The Special ed director observed a class (guess what happened THAT day? Correct, best day of the year! I suggested to her yesterday that she should be there EVERY day :) I had honestly expressed my concerns that he escalates so much that he may hurt himself or go after someone else. You would think I set this up, but he did grab an adult for the first time since the beginning of 3rd grade, while we were in discussions about this, proving my point nicely. We discussed the hormones and how they are affecting him, I explained how he has gone backwards in some areas (physicality) because of it.

So yesterday morning I sat at a table with the Special Ed Director, the Principal, the Special Ed teacher who handles his case, the band teacher, and the AI specialist from the county (and an intern; I love when they get to see how a meeting SHOULD go) and little old me. My husband asked if I was intimidated. No. Not at all. It is my job now after all, but I have learned it is WAY different when it is someone else's child you are talking about. Plus, I think our district really does a great job (IF you present it right)of working through things. These four months of working as an advocate has left me a bit stunned at how some other districts operate. To be fair, it leaves me a bit stunned at how unable and inappropriate some parents are. But yesterday they genuinely understood AND they gave him support during band. So I'm giving the school props where they deserve it. In a super super tough economic climate, when money is no where to be found they chose to do what is best for the STUDENT. What a novel idea! I'm very very pleased. For now, my hose is just a hose.

Friday, February 19, 2010

Yoo hoo, Good Neighbor!

This is why we practice. You have to be prepared ahead of time. I have recently discussed all of the practice with Daniel staying on his own for short spans of time, and our fear when he wouldn't answer the phone.

Wednesday the need arose to quickly leave the house. Zachary was supposed to stay at school for art club. It was the first day back after a 5 day weekend. I had reminded him several times about art club, sent him a snack for it, and still he forgot. This is not like him. He usually reminds ME of these things, but on this day, he jumped on the bus and came home. When he walked into the door I wondered allowed what the heck he was doing home and told him to get into the car, so I could turn around and bring him BACK to where he just came from. Daniel was on the computer in his post school bliss. Making him jump into the car for a frazzled ride to the elementary school would NOT have gone over well. So I grabbed the home phone, called it (so my cell was the last one on caller id) handed it to him and said I would be back in about 20 minutes. He knows the rules. Only answer if mom or dad calls, don't open the door, etc etc. He happily complied. I left.

I pulled into the school only to have my cell ring. I looked down to see my husband's name. I hit ignore. (sorry honey) I wanted to run Zach in to make sure everything was ok with art club and it didn't get cancelled or something. Then my phone rang again. Neighbor Laura. I answered in case there was a naked 13 year old running through the snow or something. There was not (thank goodness) We had a short conversation and hung up. My phone rang AGAIN from Todd. I ignored. (sorry again honey). I dropped off Zach and started to wonder if Todd had a problem or if he somehow knew this madness was happening. So I called him back. Only to have him say, "I didn't call you". It was at that moment that I realized on my cell phone under our home number it says "Todd" instead of "home". (it no longer does, I changed it right away) and my dense self didn't realize it was DANIEL trying to call me.

I then noticed the little voice mail icon on my Blackberry. I called my voice mail stuck somewhere between panic and confusion. Daniel wouldn't leave a message would he? He never has. He has only ever called me once before. If I were more technologically savvy I might be able to download the voice mail to my computer and then to here, but I am NOT. So I can only TELL you what it said, which really detracts from it, but it just said this, "I love you" (think of Barney saying I love you...that is the same way he said it, an example of scripting but using it appropriately and in context). My heart melted. How sweet is he? Calling me to show he can (again) and just telling me he loved me. I called him, I was already driving home by then. I heard him answer, and after a moment of silence he says "YOOOOOO HOOOOOOO!" in a very goofy, high pitched, sing songy way. We chatted and I told him he was doing great and that I got his I Love You message. He was very proud. I could "see" it through the phone. We hung up.

Driving down my street I saw Laura, who had called me earlier. I stopped and we chatted. I told her I was sorry I was abrupt on the phone but was getting bombarded with calls and explained the situation. She understood of course but then shared a piece of the puzzle I didn't know. . . before she called my cell. She called my home phone. Daniel answered it and said, "Hi mom!" Laura answered, "it's not your mom, it's Laura from down the street". At that moment panic must have set in, because he is not supposed to answer unless it's from myself or Todd, so he just hung up on her! Kind of an "oh crap, I'm not supposed to talk to her, so I'll just hang up as fast as I can and then maybe no one will know and it will have never happened" hang up. Which is why she called my cell, to make sure I was indeed home and Zachary and Daniel weren't in a bad situation. I still laugh when I think of Daniel realizing he'd answered the phone and hanging up on her! I am also very grateful to have good neighbors looking out for us and having my back as well as my children's. And also don't mind if they get hung up on occasionally...