Utter Autism

May 31, 2007

It’s Here! It’s Here!

Well, our Dynavox V arrived!

I’m relieved, excited…. and frustrated!  Since the UPS man pulled up, I haven’t had more than two minutes to look at it!  It figures I would have 3 dental appointments and a VBS meeting to attend right after it came. 

Today should be better 🙂 

So far I’m pleased with what I’ve seen as far as hardware goes.  Dynavox’s new V and Vmax are very similar to the device we had for him before from Gus Communications.  It amounts to a small tablet PC.  Originally we avoided Dynavox because we didn’t want to be restricted to Dynavox software.  There are other good programs we were using on our PCs and we felt it was better to offer him every method of communication and let him choose which to use.  With the Dynavox V, for a fee, they open the ‘computer part’ so it works just like a tablet PC or laptop.  We can install any other software we find that might be helpful to him.

The software looks ok too.  Although, I’m not sold on the pre-programming.  I suppose for most folks it works out to at least have the framework done for them.  Maybe I’m just a control freak, but I like to start from scratch and have control over aesthetics as well as content.  The pages seem visually overwhelming to me.  I can’t seem to make sense of the color coding, irregular button shapes and odd choices for vocabulary placement. 

Still, we can change it all if we want to!  Now I need to get down to doing just that.  The documentation that came with the device was very light.  For the most part they expect folks will be looking stuff up on the computer, either on the website or in the help files.  So that’s what I’ll be doing today….. I’m gonna need a BIG pot of coffee 🙂

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May 27, 2007

Swing, please?!

We roasted marshmallows in our backyard last night.  Mmmm.  They were so good!  Adrian prefers his cold.  Fortunately, he waited till we were almost finished to start eating them so I didn’t have to keep his hand out of the bag.

Afterwards my husband played with the kids while I used the opportunity to clean up the house.  It was funny to watch him.  He was simultaneously pushing the boys on the swings and playing catch with the girls.  Later they played tag.  Adrian usually spends most of his time outside just playing in the dirt so it was good to see him enjoying it all.

Apparently he really enjoyed it.  Today he kept trying to use sign language and vocalizations to get my husband and I to go out and push him on the swings.  A few years back, when we first purchased the swingset, we taught Adrian the sign for swing.  He’d even use multiple signs – push, me, please, swing, more….

We moved two years ago and he hasn’t asked to be pushed on the swing since the move.  The yard is fenced now so close adult supervision is not necessary.  The swingset is also located at the back of the yard.  I don’t think Adrian enjoys the feel of the grass on his feet (the kid hates to put shoes on) so he seldom makes the trek back there.

Still, that just goes to show you how much is locked up inside that brain of his. I guess ‘swings’ are definitely going on his device when it arrives 🙂

May 24, 2007

It’s on the way!

Good news from the speech therapist today!  Adrian’s Dynavox is on the way!

Long story, short – we waited years to get Adrian a communication device, school district finally purchased one for us, we moved, left device behind, more years of waiting, and now…. now, finally, we’re about to get Adrian’s new device. 

I’m used to putting the whole affair as far in the back of my mind as possible.  To think about the fact that he could communicate so much more, but be without the tools is maddening.  I have, more than once, broken down in front of people trying to explain my frustration.  It is to me, my biggest failure in advocating for Adrian.

Even after we finished the paperwork, even after the order was placed, I wouldn’t allow myself to think about it too much.  That frustration just doesn’t serve me well in dealing with the day to day things. 

 But now… now, it’s going to be here in days.  Now I find myself thinking about all the time I’ve wasted. I should have been designing screens, activities and layouts.  I could have been considering vocabulary, brushing up on my programming skills or taking pictures and video to use as graphics and motivators. I shoulda, coulda….

On the other hand, the reality is that without knowing when exactly the device would arrive, much of it would be just a guessing game.  Things change so fast. Kids grow so fast….

Yes, they grow so fast and we’ve wasted enough time.  As soon as this thing gets here, everything else in my life will go on hold while I get Adrian’s voice up and talking… he’s been on hold long enough.

May 23, 2007

Sibling Day

Yesterday was sibling day at Adrian’s school.  The girls went in and spent the entire day there.  They had a ball. 

It’s amazing to watch the siblings beaming with pride as they walk in with the students.  Each one I saw yesterday had a look that said, “I’m with her/him!” 

I like the idea of a day that celebrates siblings of kids with disabilities.  There’s challenge and strife, but also value and virtue in the role of sibling to a disabled person.

May 20, 2007

Disastrous Day with the Dinos

Grandma has been visiting this past week, something Adrian always enjoys. 🙂

We drove her to the airport, found ourselves in NY City with time so we decided to take the kids to the Museum of Natural History.  We’d taken the kids there before with semi-success so we figured it was worth a shot. 

It was lunchtime and since Adrian didn’t eat anything at the museum cafe last time we opted to try to get something else beforehand.  Pizza is his favorite food so it seemed an easy choice.  We went into the pizza place, ordered and sat down.  Then Adrian had a melt down.  He yelled and screamed but I did my best to keep him calm while we waited for the pizza.  We thought he’d be ok once the food was ready.  But he wasn’t.  The pizza came, he smelled it and then screamed all the more.  I finally had to take him out and walk him in circles while hubby packed up the pizza and the other three. 

We headed back to the museum.  By the time we got there Adrian was calm, so we sat down on a bench and tried to finish lunch.  Adrian finally ate some, after dissecting it and trying to wipe off the tomato sauce.

Things looked ok to give the museum a try.  Hubby chose to start with the dinosaurs since the other three love them.  Unfortunately, I think that was a mistake.  There’s something about the tall ceilings or the big dinosaurs that get him going.  It might not have been so bad except that it was pretty crowded and the flailing limbs, running and loud vocalizations were not appreciated by the other patrons.  Upon trying to remove him from the dinosaur area, he threw a fit which apparently qualified us as one of the exhibits judging by all the people looking at us.

Feeling sympathy for Adrian’s siblings who were so excited about a museum visit, I told the hubby to just take the other 3 and I would take Adrian and go walk around in circles somewhere till they were finished.  But hubby hates splitting the family up as much as I do and so we decided instead to simply give up and go home.

I don’t like to ever call things impossible with Adrian. There are varying degrees of difficulty and we usually weigh that against the potential benefit for the family, deciding if it’s worth the trouble or not. I’d like to think that we can always find ways to make things work when we need to.

If I can just prepare enough (Skittles), think of everything (including Skittles), be in-tune with him (at-one with the Skittles), enter at the right time, exit at the right time, distract at the right time (with more Skittles), feed him at the right time (more Skittles),…….   If I can just get it all right, then we can do anything, …..right?

Ok, so there is a learning curve involved.  As much experience as I’ve got, there are still things that throw me (like the pizza today) and things I forget (like how the dino-room makes him want to get up and go nuts).  Occasionally (like today) I forget how important preparations (and Skittles) are to a successful day trip. 

Will we take Adrian back to the museum?  Probably, someday.  But next time I’ll be prepared (I won’t forget the Skittles!) 

May 14, 2007

Hope for Change

This post on Autism Vox yesterday reminded me that there are those who see little or no value in those with disabilities.  They would be content to simply deny them life and not have to worry about them any more.  I don’t think words can adequately express the sadness I feel thinking about that.

Yet, it reminds me that all hope isn’t lost.  In Adrian’s 10 short years I’ve seen him literally change the lives of people all around him.  My son doesn’t speak a word, yet somehow he manages to speak directly to the hearts of those around him.  It’s nothing short of amazing.

There was a young man who, after serving as the aide on my son’s bus for a few short weeks, changed his career plans and determined to work with disabled kids.  He credited his decision to my son. 

The woman who drove Adrian’s bus for those few short weeks begged for a photo of Adrian.  Years later a woman we’d never met approached us.  She knew Adrian by name.  Turns out, she was the sister of the bus driver and recognized Adrian because all these years later, the bus driver still had Adrian’s photo prominently displayed in her living room with the rest of her family photos.  She still regularly talked about her experiences with Adrian and how she missed him.

Teachers and aides that have worked with Adrian, even as much as 7 years ago, contact me regularly to find out how he’s doing or ask that we come to visit.  One even considered proximity to Adrian when considering where to buy a house.  I kid you not!  It’s just plain weird sometimes.  I just can’t explain how this kid who can’t even speak can create such strong bonds with folks over such short periods of time…but he does…. all the time.

That’s where I find hope.  It may be easy for some folks to simply slap labels like ‘disabled’ or even ‘disposable’ on our precious kids….. until they meet them.  The one good thing about their being more and more diagnosed with autism is that there are fewer and fewer who haven’t met someone with it.  I don’t think my son is alone in his ‘gift’. I think our kids have the ability to reach out and change people’s perceptions and understanding….one person at a time.

May 13, 2007

Just in time for Mother’s Day….

I found this great post on Adventures in Autism.  It speaks about some of the things that we didn’t know, and the doctors couldn’t tell us, when our children are first diagnosed.

To a certain extent I understand the sense of loss and hopelessness that many people say they’ve experienced upon hearing their child has a disability. But I can’t claim to have really ever felt those things myself. 

Both my husband and I knew that autism was the probable diagnosis whenI walked in to the developmental ped’s office that day.  When he finally uttered the word ‘autism’ I couldn’t help but smile.  Finally we had the diagnosis which allowed us to get services and start doing something to help him.  The doctor gave me a funny look and said, “I don’t think you understand.  This is serious, there is no cure, it’s lifelong…..”  I told him I did understand and that I was just glad to finally have the diagnosis in writing.  Still, I’m pretty sure he thought I was either ignorant or nuts. 

The representative from early intervention had been at the appointment with me and as we walked out she told me she’d never seen anyone take a diagosis so well.  I had to explain that the way I saw it, autism was just part of who my son was and without it, he wouldn’t be the same boy that I knew and loved. 

Eight years later, I still feel that way.  There are plenty of times I wish things (communication, sensory input, etc.) were easier for Adrian, but I don’t ever wish for the autism to just magically leave….. he wouldn’t be Adrian without it.  And, in case you haven’t already guessed, I adore Adrian.  Today I’m extremely thankful I get to be his mom.

How to stop a tantrum in one easy step

One of the few things that will calm Adrian down when he’s gone off in a tizzy is water.  In the winter we’re left with little choice but to put him in the shower till he calms down.  He’s always had a preference for cold water, especially when he’s upset.  It seems that somehow it helps him.  When he’s in the shower upset, I’ll often fill a cup with cold water and splash him.  It always stops a tantrum in it’s tracks and brings on the giggles instead.

Now that the weather has warmed up we don’t need to tax our indoor plumbing anymore.  I simply put him outside and throw a bucket of cold water on him.  It’s interesting he’ll immediately quit the tantrum and start giggling even before the bucket is filled.

This year I’ve stumbled on a great way to keep the giggles going.  I saved an empty laundry detergent container (the kind with the spout) and filled that with water.  Adrian’s tantrum ended with the first bucket I threw on him but he and Bee have been out there playing with cups and water guns for an hour now, laughing the whole time.

May 10, 2007

How our communication journey began

Filed under: Forgot to pick a category — Carol @ 9:32 pm

 Our journey into augmentative and alternative communication (AAC) began in earnest when our son was just 4.  It was clear to me that his difficulties with motor planning and fine motor skill would make it impossible for sign language to be an effective means of communication. We needed an alternative method. 

PECS were big right then and his preschool program used them regularly.  While they helped him communicate in school, we didn’t have an extensive library of PECS at our disposal at home.  Such systems were costly.

Speaking with Adrian’s teacher and speech therapist about my frustration they suggested the speech therapist could make a communication book for him which could go between school and home covering a range of topics applicable to both locations.  “Wow! This is gonna be great!”, I thought. 

Months later the speech therapist presented me with her finished product.  It took everything in me not to laugh or cry or both.  It amounted to a spiral bound notebook with laminated cardstock pages and a total of 5 laminated PECS attached with Velcro.  I had waited months for her to put this together for us and it was worthless. 

There have been several moments since my son’s diagnosis where I’ve realized that it was up to me, not the ‘experts’, to change things.  This was one. I went home and immediately began work on a communication book.  I used digital photos and simple drawings instead of fancy PECS. 

In the end I had a book which covered important, daily requests such as diaper changes and potty breaks.  It gave him a range of activities to choose from including blocks, figures, trains and animals. Other pages gave him choices for computer games, movies, arts and craft materials, foods and drinks.  Wanting to expand his ability to communicate more than just needs and wants, I included pages with pictures of family members so he could ‘start’ conversations about them.  A page of ‘feelings’ gave him the ability to say he was angry, sad, happy or surprised. 

 It’s true, Adrian used the book independently mostly to ask for things he wanted but he would participate with us when we looked at the family and feelings page.  It was a beginning.

May 7, 2007

To get a voice (The ins and outs of AAC) continued….

When you think about where a child spends most of his time, it seems rather obvious that home would be the single most important place for a child to communicate. Yet evaluations for assistive technology rarely (if ever) take place in the home.  My experience has been that these evaluations take place in the school setting.  While communicating in school is important, there is a completely different type of communication that occurs in school versus the home environment. School communication revolves around a student being able to respond to demands put on them by teachers.  Spontaneous communication is limited.  The act of learning assumes that the student will be doing a lot of listening, not talking.  In your average classroom, the teacher stands in front of the class and teaches. The only communication given, or tolerated in some classrooms, is answering a question asked by the teacher after raising hands and being chosen to answer.  School is not a place that naturally fosters independent, spontaneous communication.  No, that would be home, where for much of the time the child is self-directed, communicating with family members about things that they choose.  Yet despite this rather obvious fact, AT evaluations, programming and use almost always revolve around school, not home use.

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