Utter Autism

August 16, 2011


I think to post here almost every day and yet when I finally get a moment to sit down I can’t bring myself to write it all.

Things have been rough with Adrian these past couple of months.  I’m tired.

The aggression seems to come in waves – worse for a week or two then suddenly a day or two without too much trouble.  Far too often though we find ourselves out of meds for the day, out of energy to deal with an out of control teen and out of ideas about how to make it better.  There’s new holes all over the house. I’ve replaced the cardboard coverings on many of them over and over.  I’m weary of being pinched, pushed, slapped and spit upon.

Then there’s the newest problem.  Running.  Many years ago Adrian was a runner.  We eventually broke him of the habit at home by taking him to the mall and letting him run away.  The doors were few and far enough between to make the gamble relatively safe.  He was always in sight as he had no interest in going into the stores.  He quickly learned we weren’t going to play the chase game just because he ran and so he gave up on running from us. 

It’s worked all these years.   Recently he’s been running on them at school.  Into the parking lot, out of running cars, into the woods behind the school, out the door, …. And he’s fast.  It scared the staff and well it should.  He doesn’t recognize the dangers.

At home it still wasn’t a problem and for that we were grateful.   But then it happened.  The other kids were taking out the trash and Adrian slipped out the garage door.   He ran down to the end of the driveway where the other kids were.  Then he kept on going.  My husband and I bolted from the house, used every technique we’ve used successfully for years to no avail.

He ran down the middle of the street a quarter of a mile, turned the corner and was headed toward a high speed, high traffic road when I finally caught up with him in the car.  He thought the whole affair was terribly funny and continued with rather manic behavior that entire evening, constantly threatening to run out the front door.

Since then he’s threatened to run several times.  Opening the front door or the garage door or trying to pry open the gates in the back yard.   We’re constantly asking, “Where’s Adrian?”  And the vigilance is exhausting.

With the desperation comes the resolve to try something new – anything that might help.  So this week we’ve started him on the Specific Carbohydrate Diet (SCD).   I’m praying that it makes a difference – even a little bit.   Because while he’s apparently got plenty of energy, I’m not sure I have enough to keep running at this pace.

June 3, 2007

Ready to talk!

For the most part, the Dynavox V is up and running now.  Adrian has been exploring various pages here and there while I’ve been setting it all up.

For the most part, it’s all familiar to him.  After reviewing many of the pages available, I decided that we’d stick with my original design and organization.  I’ve added some extra pages here and there and used some vocabulary and pictures suggested in the pre-programmed pages. 

I’m anxious to see what the speech therapist will say when she sees it.  Unfortunately, I’m not sure when that will be.  We hit a deer with the car last Thursday and we’re still not sure when it will be fixed.  I don’t mind keeping Adrian home for a few days, but if the repairs take much longer than that, we’ll have to rent a vehicle.

Meanwhile, that means I’ve got time to continue to tweak the device and get Adrian back in the habit of using it.  Not surprising, I think he often forgets it’s there.  After all, when you go 10 years without a means of ‘talking’, you don’t automatically think about the fact that now you do! 

June 1, 2007

Slowly Getting Him Talking!

Phew! I’m breathing a big sigh of relief tonight.  I found how to transfer over the Boardmaker pages from the old device onto our new Dynavox V!  There are hundreds of pages, representing hours upon hours, weeks upon weeks’s worth of work.  Getting this device functional for Adrian should go much faster now….

 Uh, should.  I did already find one bug in the translation of the files.  I have one ‘program’ Adrian loves where he puts the numbers 1-100 in order.  So there’s a total of 100 pages to make up the ‘program’.  Well, our last device had a volume problem.  The only way to fix it was to use Boardmaker’s feature telling the machine to use the ‘loud’ voice.  When the pages were translated into the new device, it translated the command for the ‘loud voice’ into ‘volume up’.  So with each number he pushed, the machine turned the volume up a couple of notches.  It was funny… until I realized I’d have to change all 100 pages. 

Since it’s his favorite program, I took the time to correct all the right answers so he could use it.  He rarely makes a mistake anyhow.  Now it only yells at him if he hits the wrong number.  I guess that’s reasonable for now 🙂

He’s spent the majority of the day on the swingset screen asking to be pushed on the swing.  Even now, it’s 11 pm and he’s still saying, “Push me on the swing!” and giggling the whole time 🙂

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.

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