Wednesday, February 24, 2010

wows and woes...

We are still forging ahead with the communication dilemma...the great news is, Mas knows exactly how to navigate around on his iPod, and when he pushes something, it's always an appropriate item. The not so great news is, he is getting increasingly frustrated with the scrolling, (instead of less frustrated) and we are wondering when to throw in the towel and go back to the expensive dinosaur device.

We are still going to give it some time, and hopefully we can train him to get the proper 'touch' so that it won't scroll on him when he's trying to tell someone something. Lastnight I managed to completely redo his setup so there are no second pages on the device whatsoever, so that if he scrolls, it will automatically bop back up to that page, and not go down to another page. We are praying that will be a boon to his training. Luckily, the Proloquo2go forum has proven, once again, to be full of very intelligent, helpful people, and there have been suggestions on how to make this work. It's so cool how the internet can be such a helpful tool!

15 is headed on a vacation for a week for her Robotics competition. (Oh, the technology this family embraces!) There are 8 kids from her school and she is the youngest. She is more in the "watching and soaking things up" stage than the building stage at this point, but she is definitely learning a lot and we think she will learn even more at the competition. It's great for her to see there are a lot of options out there for her someday career...

I managed to watch about 15 minutes of the Temple Grandin savoring it and saving it for when it's quiet around here...which is fairly rare! I love the way they depict the snapshots of the different sensory things she is encountering...and also how the squeak of the marker bothers her, how intriguing the ceiling fan is, etc. I have read two of Temple's books and have a couple more in my "ready to read" pile. She is truly a stellar person and also an example of how the right type of upbringing brought out the best of her abilities. She could have just as easily not accomplished much at all, or spent her days withering away in a home somewhere....very interesting stuff.

Well, as choppy as this post is, that is how choppy our week has been. Just a non-stop fun show of carnival-like activities...seems we are always running in opposite directions. I am trying to stay true to my self-promise to post more often, even when there are no Grand Events taking place to report on. I guess there is always something going on with everyone, if we look hard enough.

Monday, February 22, 2010

he walks the line...

The above photo is of Mason catching the opening song for Curious George...his favorite thing ever! We don't always get the tv turned on right at 7 am, but I have been trying to remember to do that in the midst of making oatmeal, doling out meds, packing his backpack, etc....this smile should remind me to get it done on time!

In the spirit of "independent transitioning", I have a great story for you.

The van driver brought Mas into the building today and the secretary called Mason's room. There was no reply. Mason took off for his room. The driver decided to "tail" him and make sure he got there. He stayed back quite a ways and watched. Mas turned two corners, made his way down a long hall, made the next corner, and when the driver turned the last corner to see if Mas went to the room, there was Mason's backpack sitting outside the room, and Mas was inside...completely by himself!

How cool is that?

In every other respect, today was a Monday...just a non-stop barrage of Mondayish things...walked on ice covered with a light layer of snow this morning, which made it incredibly slippery. I went 4 miles, and I counted 8 steps that were on dry sidewalk. (Long walk.) Even the dog was slipping! We are trying to stop Mason's iPod touch from scrolling, so that when he pushes a button, it will respond and not scroll. When it scrolls, it does not speak what he pushed, so it is extra frustrating for him. Even the school sent a note home today that they are seeing him get frustrated with that part of it.

I talked to his speech therapist, and apparently the iPods at school are all able to have their scrolling disabled...but ours is not. She even went so far as to place our iPod by one of the school iPods, did the exact same sequence of buttons, and the school one stopped scrolling and ours did not! (Sigh!) I called Apple and talked to someone there for awhile...quite friendly and concerned, but unable to help. They say it's a Proloquo2go issue, so they suggested we go to them. I have a post on the forum that will (hopefully) yield at least a few suggestions as far as what to do...

I did actually restore the iPod to factory defaults, (gulp) which essentially wiped out everything on the iPod, and then I reinstalled the Proloquo2go program....still, no change. I tried turning the scrolling on, then powering the iPod down, then powering it up, turning the scrolling off, and powering the iPod down, and turning it on again...still, no change. I installed the latest updates for iTunes and for Proloquo2g0...still, no change. I even prayed! Here's hoping we are able to figure it out. I love technology, but not when I can't figure it out! I hate to wave the white flag with the iPod/Proloquo2go option already, but it may happen if we can't get the scrolling to stop...which is too bad, since Mas has had some great moments with it this past week.

He is going to opening (30 minutes, first thing in the morn) with a higher-functioning class, which we have been trying to get them to do for some time. (After working with a PACER representative, we found out enough to know that they had to try him in there before they could tell us he wasn't able to do it.) Luckily for us, he is rocking in there! He is sitting in his chair...not getting up until he's called on...performing his task in front of the others and then going back to his seat...pushing, "Hi, my name is Mason!" when they introduce themselves each high fives when other students ask him for them...having the other students chant, "Mason, Mason he's our man; if he can't do it, no one can!" (The tears are flowing even as I type that.) It's pretty heady stuff to think of your 12 year old non-verbal son perhaps making friends for the first time in 12 years...friends his age, that is. It warms the heart. Once we stop the iPod from scrolling and he has 100% success when he pushes a button, I anticipate many more Grand Moments for Mason in the area of communication.

Yesterday, while he was in the higher-functioning classroom, he navigated to the "friends" page and pushed, "fun." Today, while back in his old room, there was someone screaming and he went to his "feelings" page and pushed, "I don't like that"....repeatedly. Pretty damn cool. It's hard to ask for anything more for him at the moment. Here's hoping he keeps up the good work and shows them all that he has a lot of untapped potential, and that he will eventually be able to spend more and more time with the higher-functioning kids. Here's to advocating for your children....HUZZAH! It pays off, even when it seems like it never will.

Tuesday, February 9, 2010

Color My World

It has been a rough winter so far, as we haven't really had a full week of school in quite awhile. Yesterday and today marked two-hour late starts, (again) and most days are fraught with worry over the roads and Mas traveling an hour one way to school...then, back again that afternoon. I think I echo many people's sentiments in town when I say, "I can't wait for this winter to be over!" The color of this winter? White.

Mas and I made Valentine's this weekend. It was exhausting work. First, I found some cardstock paper, so it would be tougher and less likely to rip. Then, I pulled out the twistable crayons. (Best invention in the children's craft world....ever.) Next, I let him choose which colors to draw with. Then, he would inevitably turn the crayon over and draw with the wrong side, (the plastic-capped end) and then look at me to see why it wasn't working....then, I would turn the crayon over for him, and he would move his hand from the "correct" position to the upside-down hold and it would be wrong again! He would color on one page, and then try to get up from the table...he would throw crayons...he would stick the crayon in his nose and laugh...he would stim on the crayons...he would stop and "snort"...he drew on the table...he eventually only wanted to draw with my magenta Sharpie and had no interest in the crayons. It drove me crazy! ;o) But, he had fun, and we eventually colored enough pages so that I was able to craft them into heart shapes for his staff.

It in no way echoed the drawing times that I used to spend with Riley. They used to be creative, fun, and relaxing. This was messy, exhausting, and at times, frustrating. But, it was also his own little event, he beamed while he was actually coloring, and we were able to craft valentines out of his OWN drawings, which is worth so much. It was a good reminder for me that experiences have to stand on their own, and not be compared to similar experiences. I guess that's what all mothers are striving for. People often ask me what is the toughest part about raising Mas. That's easy...always having to be alert. You can never relax; if you do, you might have a blue table or crayons all over the floor that the dogs will eat or things will get broken and he will get hurt or he will let himself outside and walk into the street...the list is endless. All of the anxiety involved in being on "infant-like alert status" at all times for 12 years and counting will definitely take its' toll...and will most likely shorten our life spans some amount. But, I guess it will be a very colorful life...never boring, to be sure.

Here are some photos to enjoy that probably say more than my words ever could! (Note the messy shirt: weekends are sometimes designated "anti-bib" times...I can't imagine always having to wear a bib around my would drive me batty!)

Wednesday, February 3, 2010


Well, we survived yet another IEP. After researching ABA, DTT, reading another Temple Grandin book, reading polymicrogyria journal articles, printing out IEP suggestions, crossing our fingers and praying, it is over. As such, it went fine. Although those meetings are not as much fun as going to our daughter's Parent-Teacher conferences, this one was pretty decent by most standards. We are fortunate that most of the people involved this time "get him," so we don't have to waste a bunch of time telling them all the things he can do, because he has already shown them what he can do.

We are still working hard on making the Proloquo2go work for Mas. We really want it to be his primary device, but I'm not sure if that will happen or not. It may be too early to tell. He is a little shy about using it, but we brainstormed some options yesterday that may make him more apt to try it out. Somehow, he keeps bringing it back to the opening screen, so someone has to come over to him and push the owl button to get back to his grid with his words on it. That is kind of a problem that we have to work out. He is also setting his finger down too long on the buttons, and then it will try to scroll, but will not speak the word. Lastly, there is no "click" sound on this device when he pushes the button, so that will be something he has to overcome. I consider these all to be minor problems, though...just a matter of teaching him how to get past that.

It is amazing technology, when you think about it, that is available for Mas. I am reading a Helen Keller book and also another Temple Grandin book right now, and it makes me wonder what it must have been like to be mute 50 years ago. I can't imagine Mas never having his speech device. What if he had never gotten one? The parents back in the day must have really been up against it, to deal with their child while having absolutely no idea what the child was thinking or feeling. I say, hats off to them for surviving it. I suppose that's why so many children like Mas ended up being placed in institutions back then, as I would think the tantrums and frustration levels were really high if there was absolutely no way to communicate. Makes us appreciate the fact that we have the technology that we do.