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. 

Image

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 :)

Image

December 28, 2012

The Difference a Year Makes

“He’s being medicated multiple times a day and put in the shower (our ‘safe-room’ when he’s out of control) multiple times a day. I must take him out for a drive at least once a day.  Some days when he’s particularly out of sorts and he’s already had more meds and another shower we’re driving multiple trips totalling an hour or two.”

That’s what I wrote here just a year ago.  When I wrote it I could not have even imagined where we are today.

Adrian has been in his residential school placement since April and doing very well there.  He’s always happy to go back.  He seems comfortable and happy.  We love the staff and they seem to love him.

We’re still playing with the medications, looking for just the right combination… the biggest impact for the least amount.  This last one we tried seems to be helping quite a bit.  We were able to have Adrian home for 2+ days at both Thanksgiving and Christmas.   He was pretty calm and we had no major incidents.  It was a relief considering that we’d had single night visits before which hadn’t gone that well.

 

There’s still much to be said about this whole process.  I often think about how I need to sit down and write about it all.  Part of the problem is finding words to describe the complicated reality of it all.  The other part is the fear of being misunderstood.  A year ago, I’m not sure I could have understood myself.

But the more time goes on, the more confident I feel that we made the right choice for Adrian… and for us.  The change has been overwhelmingly positive for everyone.   I’ll start the new year remembering what a difference a year can make… and with hope things will continue to get better and better.

July 13, 2012

Phone Home

Thanks to the miracle of technology we’re able to video call with Adrian in his new home.  Skype allows us to see and hear him as well as send typed messages.  The staff today helped Adrian call us and type some questions and answers.  Here’s the conversation:

 Adrian: hi mommy

Carol: hi Adrian!

Adrian: how are you

Carol: We are good.

Adrian : how was your day

Carol: we had a great day.  How was your day?

Carol: school?

Adrian: tis today

Carol: nice haircut!

Adrian: i had a fun day in school

Carol: it’s hot outside

Adrian: i went swimming

Carol: yay! swimming is fun

Adrian: we are eating pizza tonight

Carol: you LOVE pizza!

Carol: what kind of pizza?

Adrian: pepperoni

Carol: cool! yummy

Adrian: what are you guys eating tonight

Carol: echiladas – I know you don’t like those haha

Adrian: i,m going go play outside

Carol: goodbye

Carol: We love you!  Have fun!

Adrian: i love you

 

We’re so glad we can keep in touch with him this way :)

June 10, 2012

Vexing Visits

It’s another home visit weekend and Adrian’s here hanging out with us.   But I wish I could know exactly how he feels about that.  Before he moved out, it was just what we did.  There wasn’t another option.  Now there is.

When the alarm went off Saturday morning for me to go pick him up, I was having a bit of a nightmare.  In my dream our family drove to Adrian’s residence to pick him up but he wasn’t there.  He was with his housemates and classmates at a theatre.  So we drove over there and I ran in to get him.

But it was the dress rehearsal and Adrian was in the show.  Adrian was calm and happy, participating and following the instructions staff gave him.  Was I going to take him away from that?

As dreams do, I skipped to the next scene where they were having a dinner after the rehearsal.  I remember trying to use my phone to call my husband and let him know what was happening.  They were all waiting in the car.  But Adrian was enjoying his dinner, interacting with staff and having a good time.  How was I going to take him away from that?

Turns out real life isn’t that far off from my dream.  This Saturday Adrian’s house had plans to go to the zoo.  He was coming to our house instead … but is that what he would have preferred?  We just don’t know.  Adrian isn’t at all reliable about answering such questions.

At his residence he’s calmer.  He uses far less medication than when he lived here with us.  When we go there to take him out for a few hours, he’s always good.  It’s not until he’s back here at home for a while that the aggression pops up again.  Why?  I don’t know for certain.

What I do know is that we’ve somehow got to balance our visits with the other opportunities Adrian has now.  We need to find ways to spend time with him that minimize the aggression and stress and maximize everyone’s enjoyment.  One possibility is that we could pick him up on a Friday night for home visits and bring him back Saturday early.  That would reduce the ‘down’ time at home that seems to breed the behavior problems and also make sure he’s home to go on whatever weekend excursions his house has planned.

It may take us some time and experimentation to figure out that perfect timing, schedule and frequency of visits.  But I’m confident we’ll eventually find a way to regularly enjoy visits with him.  :)

 

May 6, 2012

Speaking of Adrian…

It’s been over a month since Adrian moved into his new residence.  And for over a month now I’ve been thinking I need to write something about it.  But each time I tried I failed to find words.  There’s so much to say and I don’t know how to say it all.

This weekend is Adrian’s first visit home since he moved.  Somehow the familiar chaotic rhythm of having him here makes it easier to sit down and start typing. Go figure :P

In general, the move went very well.  I don’t know that we could have asked for better.   His first few days were a bit rough as he learned the new routines and how to communicate with the staff.  But that all worked itself out very quickly and he was soon back to the baseline he had here at home…  Perhaps even better in some ways.

I could go into detail about how well the staff deals with things when he does present them with a bit of a challenge or I could report how Adrian has won hearts by sticking up for the staff when other students present challenging behaviors.  I could tell how Adrian’s already eating and drinking things there – of his own free will – that he would never eat or drink here at home or how the staff tells us all about all the sign language Adrian’s taught them.  I could go on with the cute stories of how he and his new roommate connect over xbox games or explain how incredibly calm and happy he was when we went there and took him out for dinner.

But really, to me, the thing that says it all best is how Adrian behaves when we leave him there at his house.   In the past, when we’ve had issues at school, Adrian doesn’t hesitate to let me know things are not well there with his body language and vocalizations at drop off.

When we drop him back off at his house, he’s comfortable and happy.  He’s made himself at home.   He kisses me and vocalizes a ‘bye’ and then goes off to do his thing… not even caring to watch us leave.

So yeah, Adrian is doing great.  And that means the rest of us are doing pretty well too.  :)

April 1, 2012

But Why

“But why does Adrian have to go?  Why can’t he just live with us?”

That’s the question the 8 year old asked me yesterday.  I gave him the answer he’s heard me give a hundred times now, to practically everyone I talk to.

He needs more structure.  He’s wearing poor Mom out.  They’ll help him with his behavior and learning new things.

And all those things are true.  But as I thought about it, I realized there’s still lots of why questions under all those answers.

Why don’t I have enough time, energy and patience to keep this up?

Why is he built to need more structure, attention, activity and intervention than I can provide?

 

I don’t have answers for these.  Only God knows.  But honestly, I’m satisfied with that. :)

 

March 28, 2012

Time to Pack

When we go on a Disney Vacation, I start packing weeks… ok, ok – sometimes months in advance.  Yeah, it’s crazy.  I spend weeks packing for a trip that usually only last about a week.

Adrian goes to his new residence, potentially for years, starting next week.  I have yet to pack a single thing.

Part of it is all the red tape involved.  You sorta have to pretend like it’s not going to happen while you’re waiting for the next problem to crop up… or else suffer emotional nausea from the rollercoaster.  Even now, the last step (and last potential for a problem) happens less than 24 hours before his move in time.  As much as we don’t expect anything to go wrong, you just don’t know.

Part of it is that it’s just so hard to imagine that it’s really going to happen.  How do you pack your kid to go live somewhere else?  Sure, I’ve got a list that includes socks, underwear, pants and a coat… but no matter what I add to that packing list, it doesn’t seem right or complete.

Probably because it’s missing us, his family.

March 25, 2012

Moving.

After the usual red-tape roller coaster, we’ve got a move in date for Adrian at his new residential school less than 2 weeks from today.

I think my daughter said it best when she told me about a discussion she had with someone about Adrian’s move.  “Mom, I was smiling and crying at the same time.” Yeah, that about sums it up for all of us here.

It’s happy.  We really think Adrian will appreciate all the extra activity, attention and structure of his new home.  We think that having a new set of folks look at him through fresh eyes is going to mean gains in academic, self-care and behavioral skills.  We think that the change it’s going to make in our household, especially for the other kids, is going to be life changing.

But it’s also sad.  We will miss Adrian.  We feel badly that we couldn’t single-handedly provide everything he needs to be as successful as he can be.  It’s a decision you wish you never had to make, even if you know it’s the right one.

We realize that neither the smiles nor tears are going anywhere any time soon.  In fact, I’m fairly certain that this transition will be easier for Adrian than any of the rest of us.  It’s going to take us months to reimagine a different way of living – without Adrian here.

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.

Older Posts »

The Shocking Blue Green Theme Blog at WordPress.com.

Follow

Get every new post delivered to your Inbox.