Wednesday, February 23, 2011

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.


Amy said...

M: Also check out Rex the talking dinosaur. Joe is totally obsessed with both Tom and Rex.

Michelle S. said...

Ok we will! It will give us some "variety"

Anonymous said...

hi michelle! just stopped by to say hi and i'm thinking of you!