Utter Autism

September 25, 2014

Old Notebooks : Eye Contact

Filed under: Forgot to pick a category — Carol @ 1:29 pm

January 20, 2000

I’ve started to really require eye contact.  If I have something to say to him I wait for eye contact.  He’s  doing well and most often ‘answers’ me the first time I say his name.  He also has been maintaining it until I finish speaking.  I finally feel like I’m talking to him instead of at him.

Adrian’s eye contact as a baby wasn’t horrible.  One of my favorite pictures of baby Adrian is one where I’m playing pat-a-cake with him.  He loved that and peek-a-boo and would hold eye contact with me forever while I played with him.Adrian

But he didn’t look at us when we said his name.  He avoided looking at us when we spoke to him.  When we brought his baby sisters home he refused to look at them too.  It was one of the clear examples we could point to and say with certainty, “Something’s not right here!”

Today Adrian has good eye contact.  He seeks it out.  He wants to know you’re listening when he’s trying to tell you something.  He’s learned to read people’s faces extremely well and he looks to see what you’re saying or how you’re feeling.

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September 24, 2014

Old Notebooks : The Beginning

I recently cleaned out the file cabinets and pulled out the collection of notebooks used to communicate with Adrian’s classrooms through the years.  I can’t really think of a good reason to keep them around at this point.  It’s not terribly practical or helpful to know what the problem du jour was back in 1999.

However, before I part with them forever, I plan to read through them one last time. It seems like a good idea to record some of highlights here while I do that.  I’d like to keep some of the memories of what life was like back then.  And perhaps some who read these will find it helpful to them as they go through similar things.  If nothing else, they can know it’s all survivable.  😀

Adrian was diagnosed with autism in the spring of 1999 when he was just over 2 years old.  He immediately started attending a special ed preschool where he received speech and occupational therapies.  My twin daughters at the time were 6 months old.  Yes, I really had my hands full!

The first thing I saw in the notebook from that first year was the fact that they used PECS with Adrian from that first day.  I sent in pictures for chicken nuggets, yogurt and family members.  He picked up the use of them quickly.  Being reminded of how successful he was with these even back then makes me feel more than ever that PECS really are a old and babyish method to be using with a grown man.  Thankfully, in recent years most of the staff working with him have moved away from using them.

November 1999 saw me asking staff at the school questions like…

Bee has picked up Adrian’s humming while eating habit.  Ahhhh!  How do we stop this insanity?

And

Adrian has been taking his clothes and diaper off lately.  Do you have any suggestions about how to stop this? (The duct tape only slows him down)

LOL  Oh, to be able to laugh about these things today!

Bee saw her older brother loudly humming while he ate and thought it was the way eating was done.  If I recall, we had to constantly interrupt her copycat behavior until she finally stopped.  Simply exhausting for us and very confusing for her!

And duct tape on the diaper!  I’d completely forgotten about that one.  How many parents keep duct tape in the diaper caddy next to the diaper cream and wipes?!  Oh but we did.  We had to.

The teacher wrote back that onsies or overalls might slow him down… but I had to tell her that we’d already tried both of those.  He was able to take the diaper off from underneath these types of clothing, leaving the clothing in tact so you didn’t know he wasn’t wearing his diaper until he’d peed his pants.  Thus, the duct tape solution.

The stripping behavior has stayed with us for many years.  I recall once when Adrian was 6 and still wearing diapers that he took the diaper off and shredded it.  Ever wonder what the insides of those diapers look like?  I, unfortunately, can tell you. I walked into his room and there was yellow ‘snow’ everywhere.  We finally got him toilet trained shortly after that incident.

September 17, 2014

Return to Disney World?

So I’ve been toying with the idea of taking Adrian back to Disney World for a couple of months now.  It’s been 5 years since we took him last.   That last was the trip where Adrian reached out and pinched a stranger because he was unhappy waiting for a meal.  I came back from that trip black and blue, beaten down, sad with the realization that we might not be able to bring him back.  His behavior was so out of control he was a danger to himself and everyone around him.

Of course the same was true at home at that time too.  But taking the whole nightmare on the road (or plane) just wasn’t a good plan.

Recently I’ve traveled with Adrian to his favorite malls, gone with him to restaurants and had peaceful home visits. It’s convinced me that it might be feasible to take Adrian back to his favorite vacation destination.  But I’m not taking any chances.  If we go, I want it to be a success we can build on for years to come.

So my planning starts with a novel idea.  We’re only going to take Adrian, not the rest of the family.  A good portion of why our visits have been so good is that, for the short time I’m with Adrian, I can focus completely on him.  The worst experiences we’ve had at Disney World with Adrian have all been linked, in one way or another, to our efforts to accommodate others.  We had 3 other kids who wanted to go on rides and do things Adrian didn’t want to do.  We tried to make everyone happy.  Sometimes Adrian did ok with that.  Sometimes it ended horribly for everyone.

At this point our other kids have had their chance to go to Disney World without Adrian.  It’s his turn to get the trip he wants and needs.  So this trip we will only ride the rides Adrian wants to go on.  We will take breaks when Adrian needs them.  We will eat when and where it works best for Adrian.  It’s all going to be for him.

I still hope that someday family vacations to Disney with Adrian will be possible… but we have to survive this one first!

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