Utter Autism

January 23, 2014

Too Big, Too Late

Let me take you back 12 years. Adrian was 5. They used the PECS system, where picture icons representing items or ideas are used to help non-verbal children communicate. But they also dabbled in sign language and Adrian would sometimes use that. All the while the speech therapists continued to work on his vocalizations trying to make that a productive way for him to communicate.

Even when Adrian was 5 we knew none of these methods were going to be ‘the’ answer for long term communication. Being techies, my husband and I looked to our home computer for help. We wrote a program that would offer him the pictures and play back recordings of us saying the word. He loved it and did use it. But even with a laptop, it was hardly convenient or portable. Though it did help us convince the school that Adrian could handle one of those fancy communication devices which more or less did the same thing.

Adrian had 2 different communication devices over the span of nearly a decade. Each took an insane amount of time and effort to get for him. Each lasted less time than it took to get through all the red tape to obtain in the first place.

A few years ago he added another tool to his communication toolbox. Writing. But like with the PECS system, technology has the ability to make this skill a better communication tool.

For years now I’ve handed Adrian my phone to type out his message. It’s convenient and effective. But I don’t believe the usefulness of such a device stops there. You can access everything from a sign language dictionary to pictures and icons. You’re a click away from programs that can easily turn words into audible sound. They’re more versatile, more portable, more functional than the fancy communication devices he’s used in the past.

So we set out again to try to bring more tech tools into Adrian’s capable hands. Funny how technology has changed so much… but the red tape has not. The school first insisted on a professional evaluation to determine if he could use a communication device. Uh, duh.

The red tape goes on and a year later Adrian gets an iPad on loan from the school. But after using it with him for one weekend I’m really wishing I’d pushed the evaluator harder towards a smaller device. While it’s certainly more portable than the devices he’s had in the past, it’s still a lot to tote around everywhere you go. And I look at my smart phone which can do most of the same things and wonder if it’s not a better choice.

The justification for the iPad over a smaller device for the evaluator was based on the fancy communication app that has 80+ buttons on a single screen. So it can’t work on a device smaller than an iPad.

But… do we even need buttons with icons at this point? The dude can write! Heck, teens his age are known for being able to text faster than most of us can type on a regular keyboard. Is finding the proper icon through pages of 80+ really going to be faster for him?

My conclusion? No, it’s not. Especially at the cost of the portability and ease of use.

I understand the how the speech therapists and evaluator think. There’s this idealized image of the student who uses these fancy communication devices and apps to speak whole sentences while their communication partner patiently waits. I too once imagined that’s how it would be for Adrian. Perhaps for younger kids that still not a bad way to try to go.

But Adrian is 17 now and he’s lived all 17 of those years learning the fastest, easiest method to communicate his needs to many different people in many different circumstances. He’s already developed skills to get his point across. He doesn’t need a device or app to come in and save the day. He only just needs one more tool that will supplement and augment what he’s already able to communicate.

While the fancy communication apps with icons are perfect for the younger set who haven’t learned to read or write, they’re just not the best choice for someone who can simply type out a few words to get their point across.

I plan to meet with the speech therapist to discuss all this in the coming weeks. I’m willing to give it a shot and see what she can do with these new tools… but I’m pretty sure I already know what the end result of all this will be.

The iPad will be a great tool in school, at a desk. But the residential staff and Adrian will balk at using it out in the real world because it’s just not practical. I know cause we’ve been there, done that.

But I’m less concerned about that now. I bought Adrian an iPod Touch for Christmas. It’s in a tough Otterbox case with a lanyard so he can easily carry it around his neck. And he does carry it. Staff reports they bring it on all their outings and he takes it with him where ever they go. I put the notepad app in a prominent place and recently loaded an app that turns text into speech. Once the staff and/or Adrian discover how helpful those are when he needs to say something… he’ll have the technology tool he needs for the real world.

January 16, 2014

Seventeen

Adrian just turned 17.  That’s still a little unbelievable to me.

He was home for his birthday weekend.  We took him to his favorite mall where he rode his favorite elevator.  We bought him birthday cake and sang to him.  He blew out the candle and opened presents.  It really wasn’t all that different from any other birthday. 

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Except the fact that when the weekend concluded, he went back to his residential school.  He no longer lives here with us.

But he’s seventeen now and it just feels ‘right’ to have it that way.  He’s not a little kid any more.  He’s a young man who has really grown and changed in the short time he’s lived away from us. 

I was reminded of that this birthday weekend when Adrian used his communication program to ask for a cheeseburger… right after we’d taken him to a restaurant where we’d ordered him chicken fingers.  Because he always wanted chicken fingers.  They were his favorite. He hardly ate anything else.  But it’s not that way now.  He eats many different kinds of food and he loves different things… and I forget that he’s not my little boy who loves chicken fingers. 

So the next day we went and he got his cheeseburger and I took a picture of him eating it… mostly because we still have such a hard time believing it. And then I took him back to his house.  I put away his man-sized jeans in his drawers and as I did he showed me pictures he took on his new iPod Touch of when he went to Dave and Buster’s with his housemates.  I didn’t know he took pictures with his iPod Touch.  I didn’t know he went to Dave and Buster’s.

When he got impatient waiting for me to hurry up and finish refolding his clothes he signed ‘ride’.  I put on my sad voice and told him that no, our ride was finished for the day.  The staff chimed in and told him not to worry, they’d be going for a ride to play laser tag as soon as his housemates finished their lunch.  He smiled at her.

Adrian kissed me goodbye and went back to his computer.  He never walks me to the door.  He’s happy to stay there.  He’s happy to be back in his house.  He’s comfortable with me not being there.

Cause he’s 17 now and it’s natural for a young man to want some independence from Mom…. and a cheeseburger 🙂

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February 13, 2012

Moving To An Alternate Reality

It’s no secret that these past couple of years have been very difficult with Adrian.   But you’re a parent. You suck it up and deal with it.  So we did.

But then Adrian began asking to go to school… as soon as he got off the bus in the afternoon.  And he’d ask to go to school all evening. And first thing in the morning.  And all weekend long….

It sorta hit me all the sudden one day that his message wasn’t just ‘school’.  He craves the structure, the predictability, the schedules, the activity, the constant attention,…    I realized that we just can’t offer him what he needs here at home and it’s a big part of why things can get so rough around here.

So I began investigating residential schools.

Now, stop right there.   That’s such a simple statement to make and yet it was an unphathamable thought right up until my epiphany.  See, we’re do-it-yourself parents.  We’ve always been heavily involved in Adrian’s education – we don’t rely on the school to handle it all.  I’ve driven him to school myself for the past 13 years.  We homeschool our other 3 children.  We just aren’t in the habit of handing over our kids or any part of their education to anyone else.  No matter who else is involved, it’s still our responsibility.

This was a huge step for us.  After looking into it all, making some visits, speaking to some experts and thinking hard on the idea for a bit… we came to the conclusion that it was undeniably in Adrian’s best interest to pursue this.

Just a few short months later, the process is moving ahead.  There’s still the potential for a hiccup here or there, but chances are pretty good that in a few months time, Adrian will be moving to a residential situation at a school not too far away.

*GASP*

While I really don’t want to count chickens before they hatch, I’ve also come to the realization that I do need to spend some time considering what this all means – what things will look like and how we will live.

Because, folks, this will change EVERYTHING.  It’s nothing short of moving to an alternate reality…. and if I don’t spend some time getting used to the idea, I may very well have a breakdown when it happens.

May 29, 2010

Don’t Write Him Off

It was only about a year ago that I sat in Adrian’s IEP meeting and suggested to the occupational therapist that we should concentrate our efforts on Adrian’s typing skills and confine his handwriting practice to improving his signature.

It made sense.  In all these years, Adrian’s never shown any interest in writing things by hand.  He’s shown little improvement in his handwriting skills for all the time and effort put into it over the years.  We have the Dynavox, he uses some sign and he’s typing on the computer… why continue to pursue writing?

Leave it to a teenager to set out to prove Mom wrong.

In this one short year Adrian’s gone from not writing a word more than the occupational therapist required… to writing all the time. 

It started with his teacher and speech therapist working on functional vocabulary words.  They had him typing the words on the Dynavox but when he showed interest in writing them by hand, they went with it.  Now it’s become his preferred method of doing his vocabulary. 

In school they keep paper and pen handy for him, encouraging him to write to communicate.  At home we use a whiteboard when we’re out.  And I just installed a chalkboard in the kitchen close to where he sits so he can practice there as well. 

It’s just another example of how he can still surprise us 🙂

December 14, 2009

A Year Later….

It’s been a whole year since I last posted here.  It’s been a very difficult year.  With puberty in full swing we’ve had issues with increased aggression and changes in medications.  At 5’7″ and 180 lbs. he now towers over me and can easily out muscle me.  There have been more broken windows, broken appliances, broken doors, broken beds… 

And yet the news isn’t all bad.  He continues to type words on the computer and in his Dynavox.  He’s discovered Google and YouTube and regularly types in long lists of keywords to find things to watch and see.   He’s picked up a few more chores (aka living skills) including filling the dishwasher, putting away his own clothing and even becoming independent in toileting. 

The latest report from his speech therapist:

I also wanted to fill you in on the reading and writing program that I started him this year.  Both myself and his reading teacher have been working with him on it and it’s been a huge success.  I put together a literacy binder that has pictures of functional every day objects and corresponding words.  Some of the categories include; food, leisure activities, numbers, shapes, household objects, appliances, etc.  We have been gradually increasing pages since the beginning of the school year.
He began by using his keyboard to type in a word, listen and match it to the corresponding picture.  We then moved to showing him the word and having him match to the picture.  He is now able to type many of the words when shown only  the picture.  In many cases, he is able to type in just the beginning part of the word.  This has given me a great opportunity to work with him on using the word predictor feature on his device.  He’s really starting to catch on! 

All good news.  After a rough time at camp this summer we were thrilled to find that his return to school went spectacularly.  The staff seems to be a perfect match, clearly ‘getting him’ from the first day.  It’s awesome to see the looks on their faces when we drop him off at school.  You can tell that they’re genuinely happy to see him and his eyes twinkle with reciprocal affection.

I’m grateful to have made it through what I hope will be the worst of this transition period into manhood.  And I’m looking forward to the coming year and all the progress he’ll make.

December 7, 2008

What’s That Say?

I have  a five year old who’s learning to read.  He’s constantly pointing to words and wondering, “What does that say?”  It seems Adrian has similar curiosity but without the ability to ask us to read it for him, he’s left in the dark. 

In the past I’ve set Adrian up with his Dynavox and given him items with words on it, like a cereal box or books or a magazine, so he can type the words in.  But this has always been an activity I’ve initiated. 

Just the other day, for the first time, Adrian decided to try this technique himself.  He had a screen cleaning cloth he’d been looking at and I guess his curiosity about what the tag said finally got the better of him.  He typed the words in and listened as the machine told him it said ‘Scotch Brite’.  

He smiled, satisfied that he now knew what those words said. 🙂

November 5, 2008

Signing His Life Away

Adrian’s picked up a new habit.  If he finds a pen laying about, he’ll pick it up and sign his name to the nearest piece of paper.   We find mail on the counter with his signature.  He’s branded notebook after notebook.  And there isn’t a to-do list in the house that hasn’t been blessed with his autograph. 

While I’m happy to see him getting so much handwriting practice in, I can’t help but worry that someday he’ll be making his mark on the wrong dotted line! 😛

June 20, 2008

Thanks

Verbal manners are one thing we’ve always tried to teach Adrian.  He’s pretty regular about asking for things using a verbal approximation, the sign or the button for please.  But thank you is always required a prompt. 

Until the other day.  For the first time, Adrian thanked me for making his drink.  Without a prompt.  Without so much as a glance in his direction.  He looked me straight in the eye and signed, “Thank you.”

Now I’m the grateful one 🙂

May 9, 2008

Our First Steps to Writing

I started with a whiteboard.  Adrian didn’t have a lot of hand strength and quickly gave up on writing with a pencil or crayon because it took too much pressure to make it write.  He enjoyed markers because they wrote with even the lightest touch.  A whiteboard let us erase errors easily and made the whole thing portable.

I had planned to use our collection of wooden, magnetic letters to be an example he could follow in forming the letters.  Instead we stumbled upon a highly motivating activity!  Adrian LOVED to write the letter and then place the magnetic letter on top.  A matching game of sorts.

I could form a word with the magnetic letters and he would eagerly write each letter and place the magnetic on top.  He aimed to make his letters about the same size so the magnet would match.

With this set up Adrian wrote words all the time.  He wrote ‘chase’ over and over again to play his favorite game.  He wrote ‘dance’ so he could have his turn dancing with mom in the kitchen. He wrote ‘cookie’ so he could eat his favorite treat.  In this way we increased the words Adrian could sight read and worked on his handwriting skills at the same time.  And best of all, he enjoyed it! 🙂 

 

March 9, 2008

Can’t Weight to Get on the Treadmill!

Adrian’s weight has become more and more of a problem over the past year.  His 11 year old male appetite is huge. But most of the foods he eats are limited to foods high in fats and carbohydrates which easily packs on the pounds. 

We’d been considering ways to cut back and had already made some changes. We swapped out the sugar drinks for sugar-free, switched from white to whole grains and tried to limit the treats.  But even with these measures, his weight was still climbing faster than we wanted. 

He gets quite a bit of activity in a day walking on the treadmill, riding the bike and doing heavy work throughout his school day.  At home he’s rarely ever sitting down.  His energy seems almost endless.  But knowing it’s going to be difficult to make further changes in his diet we decided we’d try to increase his daily activity level here at home. 

He got on the treadmill Monday afternoon right after school.  We’ve got two treadmills so I did my workout on the other.  After 30 minutes I was done for the day.  Adrian was not.  He stayed on that treadmill for an hour.  An hour!  Non-stop!  And not just walking either.  He played with all the speed levels. Pumping it all the way up to 10 and running till it slowed back down.  When the hour was up I had to force him to quit.  

It’s a relief to know he enjoys this and it won’t be a struggle to get him on that treadmill a few times a week.  Along with a few other minor diet changes, we should be well on our way to getting his weight back under control.

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