Utter Autism

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.

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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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 🙂

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 😛

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.  🙂

September 5, 2011

Diet Update

We’ve been doing the Specific Carbohydrate Diet (SCD) with Adrian now for 3 weeks now. 

It’s been the best 3 weeks in … well, a very long time.   These behavioral problems with Adrian stem back a good year and a half, if not more.  I’ve spent the better part of those 18 months feeling very stressed and helpless.  Not much of what we tried really helped much. 

I think it’s working. 

It feels better and, as I said before, that’s really the only thing I can base my opinion on.  No matter how subjective it may be.

Within that first week we had far fewer outbursts.  He was calmer.  We were able to get into a daily rhythm that was productive and satisfying for us both. 

This diet does not remove his OCD behaviors.  But it did significantly help the OCD over food.  That makes me wonder if it never was OCD but actual hunger brought on by the overabundance of sugar and carbohydrates in his diet.  Duh!  That alone makes this diet worth continuing.  That was a HUGE point of frustration in my life.  Gone.

We’ve had a few opportunities at this point to gain further evidence that there is a true reaction to starches and sugars.  The first did not come from food at all.  Adrian ate the sheet rock from a hole he made in his wall. The next day was horrible. 

I didn’t make the connection at first but his behavior was so different from what it had been that I kept thinking on what might have made the difference.  A quick search on the internet brought to light that sheet rock has starch in it!  I filed that in the ‘sounds strange but maybe possible’ explanations.

The next bad spell was this past weekend.  Adrian was terribly, terribly out of control Saturday and Sunday.  He was full on punching me, pinching and also attacking my husband. He destroyed cardboard that’s hung on the walls, untouched,  for weeks now.   It was abosultely devistating and very, very scary.  And that was after tripling the medication we’d had been using while on the diet!

The behavior started Saturday around 11am.  We’d already made the decision to get pizza, a big diet no-no, on Sunday.  First, because it’s the one food I haven’t been able to reproduce to his standard and he misses it.   We also wanted to do a ‘test’ before we send him back to school on Wednesday to see if there was a reaction.  We got our answer.  Heck, yeah, there is!

But that still didn’t explain why he was also nuts on Saturday.  I racked my brain and finally realized this afternoon that we gave him bacon on Saturday morning!  It’s supposedly legal on SCD in small amounts on rare occasions.  But I bought the wrong kind.  It was higher in sugar than it should have been.   I figured it couldn’t matter that much.  I was soooo wrong.

That means that every bad episode we’ve had in the past 3 weeks can be accounted for by his consumption of something not legal on the diet.  Sceptics will have to bear with me.  Come live my life for a bit and then you’re welcome to tell me I’m dead wrong.

Today we went back to the strict diet and, over the course of the day, Adrian returned to his calm SCD self.  It was strange to watch.  He tried to speak again – something he’s been doing a lot of on this diet.  He wrote and typed out a couple of messages for me.  Peace slowly returned.

Numerous times this evening we hugged and I told him how glad I was that he was feeling better.  This diet doesn’t fix everything but it absolutely IS the light at the end of the tunnel.  It’s making life livable again.  Praise the Lord!

August 29, 2010

Back to Disney

Even as we continue to struggle with Adrian’s difficult behavior, we’re preparing for another trip to Disney World.  Adrian loves going to Disney.  This will be his 1oth trip in as many years. 

We’re banking on all that experience, both his and ours, to make this trip possible despite his outbursts.  Adrian knows the drill.  He knows where the airplane goes.  He knows the parks inside and out.  He even knows most of the roads in the Disney complex and where they all go.  All this familiarity helps keep his behavior mostly calm and predictable.  Or at least it has in the past.

We know from years past that overstimulation, heat and hunger are the biggest threats to his self control.  We usually handle heat and hunger by leaving the parks around 11 am.   We pick up takeout and take it back to the air conditioned cabin to eat.  Then relax there for a few hours to avoid the worst heat of the day.  A snack before we head out for the night helps make sure he’s good to go.

Overstimulation is a bit trickier to navigate but over the years we’ve developed several strategies that work for us.   The first is the wheelchair.  The whole reason we own a wheelchair for Adrian is because our first trip to Disney we stumbled across the fact that the strollers there helped him with dealing with the environmental stimulus.  Just having his own space to retreat to helped him deal with everything going on around him.  He eventually outgrew the strollers but we found the wheelchair functioned the same.  The added bonus was a buckle on the wheelchair kept him from running and helped him wait more patiently when we had to wait.  Wouldn’t we all rather sit than stand?

Next we found that noise deadening headphones provided relief and increased his enjoyment.  Even the rides he loves are so much more enjoyable when he’s not assaulted by too much sound.  Adrian’s gotten to the point where he knows when there’s too much noise for him and he’ll ask for headphones.  We’re happy to oblige.

The other major component to a successful trip is a means to communicate.  Our first couple of years we made an effort to teach and use sign language to give him a means to communicate.  It helped some but sign has never been his strongest means of communicating.   The past couple of years we’ve had the Dynavox but bringing that to the parks was too difficult.  So instead I printed up cards with screen shots of the Dynavox pages and laminated them.  Adrian was able to simply point to the pictures of the buttons for what he wanted.  Last year we skipped the ‘buttons’ and simply printed up a card with pictures of everything. 

This year Adrian is reading and writing so the picture card has been replaced by a list of written words attached to a small white board where he can write out his requests.  He already knows how to spell most of the rides, foods and activities he enjoys so the list is more as backup if he needs a bit of help.   He can also point to items on the list for a short cut but I’ll likely make him write things out since that’s an activity he finds calming and it takes up time where he might otherwise be getting fidgety.

As our whole family looks forward to our vacation, I’ve got my fingers crossed that this is going to be a great trip for us all.

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 🙂

February 6, 2010

Hospital Adventure: the ER

If I was looking for a reason to come back to writing here, I think I’ve found it. 

Adrian began pointing to his ankle one night about a week ago.  It looked slightly swollen but there was no bruising or redness or any other indication of injury so we put him to bed and the following morning it was back to normal.  A night or two later, same thing. 

A call to the doctor, an x-ray and some blood work won us a ticket straight to the hospital to treat a bone infection. 

Knowing the process of being admitted to the hospital would be difficult, I packed a bag full of activities, snacks and tools.  I had his music player, DVD player, communication device, a laptop, a Nintendo DS, a video camera and a white board to write on.  We used his wheelchair to bring him both to help him deal with the sensory overload of the environment and also so we’d have a measure of control with him securely fastened in the chair.

Short on rooms, we ended up sitting in the hallway on a bed.  The noise, the activity all around us, the lighting and the confusion were a recipe for disaster.  Adrian didn’t disappoint.  He yelled, screamed, cried and carried on.  He pinched and punched everything in sight – the walls, the bed, himself and us. 

We tried the communication device and the DVD player but neither caught his attention enough to distract him from his tirade.  I pulled out the white board and drew part of a house adding the letters ‘hou’ next to it.  He bit stopped to  finished drawing the house and writing the word. 

Next, I wrote down the letter ‘M’ and handed him the board.   He wrote the word ‘mouse’.  I wrote several other letters and for each he thought a moment and then wrote out the rest of a word that began with that letter.  He wrote his last name, cookie, home, and shocked me by writing my first name.  I didn’t even know he knew that!

He found the activity calming but it couldn’t last forever.  The wait went on and eventually he’d had enough and he went back to his tantrum, this time running down the crowded hall.  We moved to using the technique of folding his hands and slowly counting to 10 which was met with only minimal success as evidenced by the black and blues that still populate my arms.

Once we got into a room he settled down to watch some TV.   We turned the lights down, fed him a few cookies and had a chance to catch our breath for a moment. 

As the moments ticked on he became more agitated.  It was getting late and I’m sure he wanted nothing more than to just go home to his comfy bed.  I told him that we were going to stay and sleep in this strange place.   I think he clearly understood what I was saying because each time he responded with anger and increased aggression.

He sat still and calm and let us put an IV in.    But my husband and I ended up sitting on either side, each holding a hand to prevent him from pulling it out.  In the end our efforts were futile.  We were distracted talking to one of the doctors for a few seconds and that’s all it took him to rip it from his arm despite the tape and gauze wrappings they’d applied.

Our business in the ER finished, we were relieved to finally make it to the pediatrics unit… well, all of us except for Adrian.

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.

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