Self Advocating

It seems that for years we (when I say "we" I mean our family in conjunction with speech therapists and teams of people!) have been trying to get Daniel to tell us what he needs.  Now it seems that is all he is doing and it can be a little much!!  Working backwards.  Yesterday he had swimming.  It was his first swim with "Tuesday girl" since she came extremely late and sent him into a melt down (see previous post).  He was very anxious before going yesterday which I didn't understand until we arrived at the lobby of the pool where we meet the coach every week.  45 minutes earlier he was kicking the wall with his bare foot (very hard) and screaming at me.  This was in reaction to me telling him that perhaps it wasn't a good idea to bring his I Touch into the bathroom in case he dropped it in the sink or toilet.  (I was speaking from experience by the way).  The melt down took me by surprise until we went into the lobby.  I saw his face light up and he said, "Hello Tuesday girl, I'm SO glad you aren't late!!"  To which everyone in ear shot laughed.  They have all been commenting on Daniel's outstanding ability to say EXACTLY what he needs.  But when does it become too much?  He needs to still be able to handle a "no".  That is the tricky part. 

Regarding the I Touch above.  He loaded a new application an "app" for those who know this sort of thing.  It is Tom the Cat.  My friend Jodi had it on her I phone this weekend (more later) and Zachary saw it and downloaded it.  He showed it to Daniel and now Daniel is totally obsessed. Here is an example of Tom in action.


     

You can pet Tom and make him purr, feed him milk, punch him (yes) and the kicker? You can talk to Tom and he repeats everything you say, in his voice. This is like Daniel's dream. But then the realization came that his Touch doesn't have the microphone. Todd broke the news to Daniel with trepidation, thinking he would have a break down. Instead he said. "You can go to the store and get me a microphone". Excellent problem solving indeed, but we happened to be in the middle of a severe winter storm and in the process of getting 15 inches of snow. We weren't going anywhere. When Todd pointed this out to Daniel he said, "What do you mean you won't go?" Again. Excellent job expressing yourself. Three cheers! But um, no. It's difficult NOT to do it because you are so happy he being so clear in his needs. But part of you is thinking "you aren't the boss of me kid!". It's a tough balance.

Just so you know the "end" to that story, Todd did go out the next day and after searching all over we discovered that the headphones that came with his Touch had a microphone built in. So we had them all along, we are just not technologically advanced and didn't know what it was! So all is right with Tom, except that he has it all the time and even wants him to go to the bathroom with him. . .

Still working backwards, now we are to Friday/Saturday. We went on what I can now say is annual ski trip since this was year two. We packed up our entire existence and went 3 hours north with 5 or 6 other families. Friday night we all went tubing. SO much fun. I call it "lazy mans sledding" because you get a giant inner tube, hand the handle to the tow rope operator, plant your butt in the tube and he puts it on the tow rope and it drags your lazy butt up the hill, where it pushes you off to the top of the run and you go down the hill yelling with glee! I love it! It's perfect for me! All the fun with no work!! Because of all of these things, Daniel loves it too. He does NOT like going backwards down the hill, but he settled in and we did our best to keep him forward, by Todd hooking their tubes together so he could control it a bit. He had a blast. There was swimming and eating and socializing. He loved it.

But this year, Daniel wanted to ski. Of course he thinks he'll just slap on skis and swish down the hill with the Wallace and Gromit theme song in his head.



There is a point in one of the movies that someone is skiing with this song playing, so that is what he thinks. We of course know this will be a nearly impossible feat. But he wants to try and all be damned he was advocating that he was going to ski!

Saturday, we rented skis for him. Size 13.5 men's ski boots, beginner skis. The whole thing. After a lot of wrestling around in the snow he FINALLY got the skis on. When it takes 20 minutes to get him to properly put his boot into the binding, you know this is going to be hard. He was very frustrated. So was Todd (the primary teacher, yay me!) Daniel was ready to get on the magic carpet and go to the top of the bunny hill. Todd told him "no". He had to learn to walk around, "skate" around, snow plow "make a pizza" and stop. This was very frustrating to Daniel. He was ready in his mind. He had the skis, he had the theme song, let's GO! So there was a lot of Daniel complaining and asking to ski and Todd saying no. Then Daniel would get in Todd's face in frustration. I don't know how long this went on, but at last we called lesson 1, quits. Daniel and I went back to the room. Todd went skiing down actual hills with Zachary and Daniel said he was trying again LATER. Yup. After that, he wanted more. Like I said, when he makes up his mind. Look out!

All be damned, later on, he did it again. This time he got the skis on quicker. Todd literally pulled him around with Daniel in a crouch, so he could get the feel of it. He could walk around, he could turn around. He fell a few times and the world didn't end. Todd helped him up and they did it some more. He never got to the hill. He couldn't "make a piece of pizza" with his skis. Sometimes it's just hard for him to get his body to do what his mind wants it to. Or he doesn't understand (bad receptive language) what you are asking him to do. It has got to be very difficult, to have someone explaining something to you and you don't get it. He now simply says, "I don't understand" and we try it a different way. He is self advocating.

I think he did really well. He had two mini "lessons". We made progress. I am sure that sometime in the future he will be going down that hill, humming the theme song in his head, more likely out loud. I know he'll do it because he didn't give up. I can see the determination. I can't wait to see it happen and I'm even happier that I don't know how to ski either which makes it officially not me as the teacher!! ha ha ha! Todd was amazing!

I can understand his frustration in all of these instances. He is telling us what he wants which is what we have been asking him to do. Then we are telling him it will be different. It is frustrating. But it's called living life right? Autism or not, you have to learn when things are appropriate. I am so pleased we are having this problem. You get what you ask for and you dig in deeper.  You keep working.  Along the way, hopefully you enjoy the ride.  It's not the lazy man's way, but sometimes the harding the work, the sweeter the reward.

Progress and Powerless

Just when things are moving along nicely.  . . Friday, Daniel had an Activity Night (again!).  I went and worked concessions.  This gave me the opportunity to stay out of Daniel's way, yet be there for him if he needed me.  Without any prep he came and checked in a few times.  Once to tell me he was going to the hall to play Foosball, another to go to the bathroom (which tends to be what he does to take a break and find somewhere quiet).  Once he came and bought some M & M's.  It was good.  A few times I glanced out of my concessions room when there was no one there asking for Coke or candy or pizza.  I could see his head over the group, a whole head taller, jumping with the rest of the kids, arms in the air, dancing with the beat of the music.  He was having a blast.  I couldn't see who he was with and it didn't really matter.  He was having fun and I wasn't stressed.  Progress. 

On the way home I asked him who he was dancing with, to which he replied Emma (who I know and love) and "my new friend Nora".  (not her real name)  I hadn't heard this one before.  I was curious, as mom's tend to be, so I emailed my friend to ask if she knew who this girl was.  She did, and assured me of her sweetness.  It made me happy to think that he bonded with someone new while rocking out on the dance floor.  Monday he came home from school and as we were talking about his day he was reaching into his pocket.  I asked him what he had, since he rarely has anything in his pocket.  He pulled out a small little card and said "My new friend Nora gave me a Valentine with a sweet treat attached".  Yup, the small little Sponge Bob Valentine had an Air Head attached.  He seemed pleased.  Being an 8th graders they don't all exchange, so I hadn't even thought about it.  It can be hard to read his feelings in these situations.  I believe he was happy to receive it and be thought of, but he tossed it on the table, where it still sits.  I have brought up a few times how nice it was for her to think of him and give him a Valentine.  He agrees.  But that is as far as it goes.  But still, it's progress.

Today he had swimming.  His Tuesday girl wasn't there when we arrived.  Unusual, but it is only week 3 with her.  We waited in the lobby while Zachary bounded up the stairs to the balcony where we watch and he eats his snacks and plays with his I Touch.  Daniel looked at me with some concern and asked where she was.  To which I replied with a big smile that she would be there.  While in my head I was screaming HURRY UP, because I know we only have a few minute window before he starts to stress.  Swimming is very important.  Any time lost in the pool, causes more stress.  So we waited.  He asked me again.  He told me he was "getting worried about her".  I assured him she was fine, just not there.  He asked me again.  I suggested he ask the Professor if he knew where she was.  (Ha! getting him to perseverate on someone else!)  But also I was trying to get him to problem solve and make sure she hadn't called in sick.  The Prof had no answer.  Daniel decided he'd "go wait at the door".  THIS was new? I let him.

Other coaches were coming in.  I could hear him quietly saying "she'll come", and "she'll be here", hoping in my head that it was true.  Although I was losing faith.  Quickly.  I could see him starting to deteriorate.  Nothing too obvious, only obvious to me.  The Prof. went to the locker room to set up a back up coach.  He came back and said, "give it two minutes and we'll  have him swim with the T.A.".  I sort of knew that it would be two minutes too long.  But I kept quiet.  I'm not sure why.  A few years ago I would have stepped in and solved it all.  At Daniel's age of 14, I know that doesn't always help him.  So I smiled and tried to reassure him, and waited. 

The T.A. came out and introduced himself to Daniel.  Daniel politely shook his hand and replied (sometimes these rote responses are helpful) then Mr. T.A. said, "we get to swim together today".  Six simple words.  But this slow climb to the top of the cliff sent Daniel over the edge.  He started yelling.  And jumping. And flailing his arms. And stomping his feet.   Did I mention yelling?  It is quite a site to see a 205# 5'10" "boy" doing that in the lobby of Jenison Fieldhouse on MSU's campus.  I smiled.

I smile because my facial expression is the only thing he can see in a fit, so if I'm not upset, it throws him off.  I think it may make other people think I'm a lunatic.  Or that I'm brave.  Either way, it is something I've trained myself to do, despite what I feel like inside.  He fell to his knees.  Mr. T.A. said they'd have a great swim. Daniel said through his tears, "I WON'T swim with you! Only Tuesday girl!!" (he said her name, but you see what I'm doing).  WOW.  That's new.  (they sometimes surprise us).  This time it wasn't about the swimming.  It was about swimming with HER.  Interesting.  This also proved to be a more difficult situation to get out of.  I smiled and assured him, he'd have a good swim (yeah right! I'm thinking  DISASTER!) still smiling.  "Go ahead Daniel, you can do it".  He got up and (still yelling) marched into the locker room.  The place I cannot go.  Men only.  MSU athletes abound.  I. can't. go. in. there.  Powerless. 

So I went upstairs.  Filled in my friends and waited.  He came out of the locker room, changed, face extremely blotchy.  Mr. T.A. came over to where Daniel was sitting.  I couldn't hear him, but he seemed to be encouraging him.  He gave him five, but Daniel was on the edge of the cliff.  Then, as if in slow motion, I could see Mr. T.A. about to pat Daniel on the back.  You know... a "way to go" back slap.  I felt like I was in the Matrix. It all felt slow motion.  I stood up and started yelling, "don't touch him! don't touch him,  DON'T. TOUCH. HIM" then smack. On the back.  Zachary and I recoiled waiting for the back lash.  Daniel's head turned with a jerk, as if to take a giant bite out of his arm as it lay on his back. But he stopped (just) short.  Zachary said, "Oh my God I thought he was going to bite him".  To which I replied, "He was.  But he didn't."  Note to those working with kids with autism, WHEN A CHILD WITH AUTISM IS AT THE EDGE OF THE CLIFF... DON'T TOUCH THEM!!!!  Is that clear enough? 

Then something amazing happened.  Tuesday girl walked into the pool area.  With a huge smile plastered on her face.  (Good girl).  She helped him with his goggles (and he got REALLY in her face) a warning.  His way of saying, "Tuesday girl I'm PISSED".  Then they jumped in.  And did he swim?  Yes he did.  He swam harder and faster than I've EVER seen before.  He did new kicks with the kick board.  He dove for rings in the 10 ft (which he had refused to do with her until this week).  As if he was proving how great he was.  It was incredible.  Then once he looked up at me and waved.  I waved back and he yelled, "MOM, I'M HAPPY AGAIN!" Which is what he always says when he is totally over it.  "ME TOO" I yelled back. 

After, in that same lobby of Jenison Fieldhouse, where an hour before he was on the ground yelling, Tuesday girl asked how our Valentine's was, and he told her about his Valentine from Nora.  To which she said, "I got one from my parents".  In a dejected sort of way.  Maybe next year Tuesday girl.  We said our good byes, and as she was walking away Daniel  yelled out, "next week, BE ON TIME".  I love that kid.

Keeping Connected=Overcoming Distress?

Sometimes it's the little things.  I was talking with a friend the other night and she said her daughter, who has babysat for us, mentioned how easy Daniel is compared to some other kids.  I take that as a compliment for sure!  What people do not realize, and never will, is the effort that goes into that.  What they also don't realize is all of the planning and work and encouragement it takes for a seemingly "normal" day to look normal.  What it takes for it to be a day without Daniel biting his hand so hard he leaves bite marks that stay for a day, or that he doesn't pound his head with his own fist.  How much we have to set up a situation for him to be successful.  The down side is that then they think I over worry.  I know I don't.  Only Todd and I truly know how much it takes to get Daniel prepared for something.  We are able to leave him with other care givers because we know he is comfortable in that routine.  Preparation can be as simple as a quick social story, or as complex as years of working him into a situation.  My Aspie from Maine blogger talks about it beautifully in her most recent post.

Many of you know about Daniel's fear of the "evil Belle Tire mascot".  It has paralyzed him from going to restaurants or being anywhere that has TVs playing.  He lives in constant fear that this mascot will appear on the TV and send him into a panic.  We still don't know the back story of that fear, we just know it exists and it plays a huge part in where we can go as a family.  I have written about it a lot in my blog over the past few years. In fact one of my followers is from Belle Tire.  They have even written me apologizing for the fear it causes Daniel.  I appreciate the sentiment, I just wish it helped Daniel in some way. 

Last week I made a trip to the Detroit area (home of Belle Tire!)  to celebrate my cousins 40th birthday.  While I was gone Todd took the boys out to dinner.  Somehow he got Daniel to go to a new place.  According to Todd he didn't really DO anything, he just gave him a choice and Daniel chose it.  This is why you never give up trying to make changes, because just when you think you know the answer.  They surprise you!

Just to see if it was a fluke, we went there, all four of us, last night.  After Daniel's Tuesday swimming we usually all meet up at a local cony island "Sparty's".  Daniel loves Sparty's and I do too. But I'm a little burned out on it to be honest.  I love how they treat Daniel there.  The cook sees us walk in and immediately puts Daniel's burger on the grill.  He knows what Daniel will order and he starts it immediately.  They also still allow him to order with the waitress, even though they know what he'll say.  It's good practice for him, and they seem to love his routine and good nature he brings in every week.  But Sparty's may be missing us.  Last night we went to another local restaurant.  It's called Crunchy's.  It's a tiny little "dive" (which I say as a compliment and with love).  Todd and I spent MANY hours in this place before kids.  It is also a bar, but has a pretty good menu and some of the best burgers in town. 

Why have we not been there before?  Because there are TVs everywhere!  And I mean everywhere.  For such a tiny place there is nowhere in the entire place that you can't view a television.  This is because it is a college establishment and they want the crowds who go to watch college sports.  Todd and I have known each of the owners of this place.  Why the change?  Why did Daniel decide it's OK?  Well, I think because Todd told him 'it's safe' and he trusts him.  Over the years he is more calmly learning to accept when we tell him something is safe. We stay connected to him and give him encouragement to help overcome his fear.  Tied into overcoming a fear is of course a reward.  The reward here is that Crunchy's has a PINBALL MACHINE.  Daniel loves pinball.  So the fact that after his order is placed he can play pinball is a big deal.  Zachary is thrilled with Crunchy's, he loves the burgers (he has good taste) and Todd and I are happy to be back at a place that we have always loved. 

So last night after we told our waiter what we wanted for dinner, I pulled two dollar bills out of my purse, one for each boy.  They slid out of the graffiti covered booth that the local college students have "decorated", each with a dollar in hand, in search of the change machine.  Todd and I sat back as the quarters dropped into the pinball machine and he looked at me and said "this almost feels like a normal dinner out".  We were both relaxed and so were the boys.  I could tell Daniel had no anxiety despite feeling under the weather.  To those around us, they would probably not think twice about it.  They might think it's easy for us to go out for a burger and fries.  They would of course be wrong.  It has taken years and years for that to happen.  He was 3 the first time he freaked out and refused to go to a restaurant because of TVs.  He is 14. So when people think Daniel is easy to be around, I am flattered.  Because no matter what it looks like, if we weren't constantly working with him, he'd never go somewhere like this.  Our  progress may be slow, but it is progress none the less.  We are giving him the tools to manage in the world and the best part is he's taking them, when he is able to. 

Aspie from Maine compares her story of riding a bus to a quote about floor time "If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” ..... “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.” (Melissa Fay Greene, New York Times, 17 October 2008).  I love that.  It amazes me that I came onto my blog today to write about going to this restaurant and Daniel keeping engaged and calm only to read this post.  They are really both about the same thing.  And I get it.  I know how hard it was for Aspie to do what she did.  I've observed it with Daniel for 11 years.  Hurray for staying connected!