Utter Autism

December 10, 2015

Busing

Adrian started a special preschool program when he was first diagnosed at 2.5 years of age.  I’d made the decision to be a full time mom so there was no question that I’d be driving Adrian to and from his preschool each day.

The girls were about 6 months old and handled the 30 minute ride well.  I’d run errands after morning drop off, head home and then leave the house a bit early in the afternoon so the girls could get a full nap in the car around pick up time. When we moved, the ride to his new school was still about the same 30 minutes so we kept our routine.  

Then he moved to his kindergarten classroom at 5 years old.  The girls had just turned 4 so when busing was offered I figured we’d give it a go.  The worst case scenario if it didn’t work out was that we’d all have to go back to our familiar routine.

From the start there were serious problems.  Within those first few weeks the bus folks were reporting tantrums, hitting and kicking windows, hitting and kicking and pinching other people on the bus, taking his shoes off and sometimes even throwing them at the driver.

I met with the bus driver, aide and bus company management and tried to give suggestions.  They tried playing his music for him, tried taking his shoes off as he entered the bus (which was really just a minivan), tried having the aide sit in various places and interact in various ways.  Things would get better for a bit but there was no way to make everything go smoothly all the time.  After several months of trying I did eventually go back to driving Adrian myself.

We’d give bus rides another go many years later with equally mixed results.  The ride to school was impossible but the ride home from school could be managed… most of the time.  There’d still be occasions when I’d get a phone call and have to run to the school to pick him up myself.

Adrian’s difficulty on the bus was one of the points we made to the school district to support his going to a residential school.  They were pushing for him to ride an hour on a bus to and an hour home from the school every day instead.  Yeah, right!

I’m really grateful that through Adrian’s schooling years I was in a position where I always had the option of driving him to school myself.  And I’m really glad that our days of having to even think about a bus are over!  😀

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November 8, 2015

Pinching

Reading back through the notebook we used to communicate with Adrian’s teacher and therapists from his kindergarten year I found a familiar problem discussed.  Pinching.  This had been a problematic behavior for Adrian as far back as I can remember.  It probably started when he was a toddler, when most kids move into verbal communication methods.  Without being able to speak, he relied on non-verbal methods to express himself.  Pinching was one of these.

The new kindergarten teacher asked me if there was anything specific we did to deal with his pinching. I explained to her that in the past we’d tried time-outs and other discipline measures without success.  Reminding him to ‘touch nice’ seemed to work when he was using it as a means of getting your attention but not when he seemed to do it out a sensory or compulsory need.  

For many years I had black and blue marks up and down my arms.  Adrian’s been known to pinch complete strangers in crowded places. I was constantly on alert to protect myself and others from his fingers.

Today Adrian still pinches himself and others.  But, in general, I think he pinches less now than he did in years past.  Part of that is due to being with people that ‘get’ him and are able to respond well to his needs and wants.  Part is probably just maturity and more reliance on other communication methods.  Part might be the medications he takes now too.
While I wish I had some clever solution to offer to parents who are going through the worst of it now, I don’t.  Best I can do is give hope that it can get better.  It did for us.

October 3, 2014

Old Notebooks : The Gluten Free Diet

April 24, 2000

We started Adrian on the GFCF diet this past week.  This, of course, means a lot of restrictions on foods so I’ll be sending both snack and lunch foods from now on.

It was not an easy decision to try Adrian on a special diet.  First, there’s the skepticism to get by.   As a young parent, it’s hard to go against convention.  Especially when you’re not sure what’s the right thing to do. There were other potential ‘treatments’ we passed by because they were a bigger step than we were prepared to make at that point.

The diet, on the other hand, seemed fairly harmless.  It wasn’t going to hurt Adrian or the bank account to give it a try and see what happened. So we committed to a one month trial removing all gluten and casein from his diet.

Back in those days that was not an easy feat.  Today I walk in my grocery store and there’s shelves full of gluten free products.  Back then, to find anything gluten free at all, you had to shop specialty health food stores and even there the selection wasn’t great.  It was a lot of work to prepare the food.  And for a kid who didn’t take easily to new foods well, there were other challenges besides.

The results?  Well what we saw in that first month was enough to convince us that it didn’t hurt to stay on the diet.  Some of what we saw improve:

  • He waved ‘hi’ and ‘bye’ for the first time ever
  • He was playing with toys appropriately more than ever before
  • He played with a toy with a friend for the first time
  • He was ‘increasingly willing to tolerate various sensory and movement experiences as well as participate in activities chosen by the therapist’
  • His eye contact improve both at home and at school with therapists and teachers each mentioning it to us separately
  • He did all the motions to songs without hand over hand
  • He improved his ability to follow directions
  • He seemed to be more aware of his environment

And that was all in the first month after starting the diet.  It was a lot of improvement over a short period of time.  He’d been in school a full year and we hadn’t seen that much so fast in all that time.

Could it have just been coincidental? Yup.  We’re talking about a kid who was getting full day preschool including multiple therapies who had 2 sisters at home who were themselves going through many of these same developmental milestones.  Maybe he was just ready for all that and it would have happened diet or no.

But as the diet wasn’t causing any great hardship on Adrian and we were seeing such good things… well, why not stay on it?

In the following month we saw more great strides.

  • Participation in circle time including clapping at the appropriate time
  • Playing with a wider variety of toys in more appropriate ways
  • He gave his sisters hugs and responded to their requests for hugs from him
  • He gave my husband and I kisses for the first time ever (he was 3.5 years old)
  • Babbling – something he’d not done since he was about 6 months old
  • Attempts to say words – closer than ever to talking with approximations of the word book and up
  • Use of his first sign language
  • Started  paying attention to family pets for the first time ever
  • Attempted to sing a complete song by himself with motions and ‘singing’
  • Played ‘Ring around the Rosie’ with his sisters – unprompted
  • Blowing kisses for the first time ever
  • Attempts to say more words – out, all done, eat, etc.

Again, this is all within 2 months of starting the diet.  Much, much more progress than we’d ever seen before in such a short time.  It was encouraging and not knowing if it was the diet or something else, we decided to just continue it indefinitely.

September 19, 2011

Duct Tape for Life?

So this past week was rough.  It started out ok.  We were seeing more aggressive behaviors and much less calm from Monday on.   We know he ate part of a wall at one point and I discovered that a pizza dough I made used an illegal parmesan cheese.  He’d eaten that on Sunday and Monday. 

So ok, we fix that and we’re good.  Right?

Wrong.

We never quite got back to that good spot again the entire week.  We did ok but it wasn’t the same.  While he was coming down from tantrums faster than before the diet, we were still having tantrums all the sudden when we hadn’t had any for weeks.

Hmm.

Then Saturday and Sunday came.  And it was awful.  Right back to as if we never started the diet.  WHY?

We just don’t know.  We keep things Adrian can’t have locked up in a footlocker.  We did find that wide open on Saturday at around 11 am.  But despite the fact Adrian must have been in that room, we can’t see what, if anything, he took.  There were muffins, candy, chocolate chips, rolls and cereal all there, seemingly undisturbed. 

The only thing he could have taken that wouldn’t have been obvious was granola and cereal bars that were all thrown in a plastic grocery bag.   But then there would have been wrappers and we didn’t see any.  Granted, I didn’t go searching through the garbage.  I wish now I had.

Saturday was bad.  Sunday was worse.  Today the school had the worst episode they’ve seen since the start of the school year.  He came home with his shirt all ripped up from a rage – Hulk Hogan style.  He’s been crazy here since he got off the school bus two hours ago.  And all of that was with using all the meds. 

The worst part of it all is I just don’t understand why.  What’s different?  Is it something he consumed?  If so, what?  Could it be he got to something in that box and it’s just taking longer than the usual 24 hours to go through his system?   Could it be the dried pineapple that I was so happy he finally ate on Saturday and Sunday?  Is it something else in his diet that I messed up with?  Is it something he was eating before that he’s reacting to now?  Does it have nothing to do with food at all?!

At this point you could tell me it’s nothing more than the phase of the moon and I’d be happy.  I just want to know WHY.

The return of these behavior problems brings back all the old familiar stress.  I can feel it in my back and in my shoulders.  I’m listening to him carefully, trying my best to catch him before he goes over the cliff into total lack of control, waiting for the smash of a window, the banging on the wall, the yelp of a poor sibling who happened to be in the wrong place at the wrong time,  another broken appliance, another hole to fix, …

I’m sitting here with duct tape now, repairing the computer headphones he broke in a tantrum.  I’m covering every last inch with duct tape.  It’s the only way we can make them last.  Then I’ll duct tape a new set of ear buds for his music player because after months of abuse, he finally broke the last duct taped pair.

And I can’t help but wish that duct tape could fix all of this too.

August 16, 2011

Running…

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.

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 🙂

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.

September 4, 2008

Thus Ends the Summer

The rest of the summer passed rather quietly.  Camp ended and Adrian spent about two weeks home.  He hates being cooped up here and regularly asked to go for a ride in the car, sometimes with his device and occasionally with sign.

Dad was gone for one of those weeks.  We drove him to the airport.  Adrian was very excited.  I took him to the keyboard screen to see if we could get some insight into what he was thinking.  He typed ‘gr’.  I made a guess and took him to the family page where he pushed the buttons for Grandma and Grandpa.

He’s been very willing lately to make an attempt to type his requests, even if the vocabulary exists elsewhere on his device.  Many times he’s even gone into other pages to verify how to spell the word then gone back to the keyboard screen to finish typing it.  It’s such an encouraging step.

We’ve also seen him attempt typing in his own messages when the word he wants isn’t somewhere else.  The most memorable of these was the word ‘Teletubbies’.   In the end, he got his message across despite having misspelled the word.  Based on what we’ve seen so far, I wonder if he doesn’t understand at least some of the phonics involved in making words.  We’ll continue to take him to that keyboard screen as often as possible.

Today is his first day back to school.  I don’t know if it was the excitement or what but he was up from 2 am on this morning.   He was very glad to get back to school and very excited about riding the bus home for the first time today as well.

July 9, 2008

Summer Camp

It’s finally time for camp!  I’m not sure who’s more excited about it. 

Adrian loves being outside, all the movement involved in the day, the swings, the swimming and the relaxed atmosphere.  He’s working the the same teacher and support staff so he is comfortable with the people he’s with all day and many of the same kids he knows from school attend camp also.

I love that it starts a half hour later and is 15 minutes closer than school.  I could go for this schedule year round.  The drive is far more pleasant and taking Adrian is so much easier cause he’s just so happy to go. 

Yup, Adrian and I agree… we wish the summer were longer! 🙂

April 6, 2008

Nifty News

A while back I programmed a button on Adrian’s home page to express something that had happened at home I thought Adrian might want to tell his teachers.   It worked so well that it’s turned into a permanent  ‘News’ button. 

The school uses it to allow Adrian to pass along information about things he did at school.  He was able to tell us when he went roller skating, when they colored eggs and about his favorite part of a book they read.

Here at home we programmed it so Adrian could tell folks at school about walking on the treadmill, talk about his loose tooth and say what he did over the weekend.

Much of what we’ve programmed the button to express have been things that would have been difficult for Adrian to talk about otherwise.  This button makes it easy for us to add thoughts that aren’t part of his usual vocabulary. He seems to appreciate the ability to share these various news bits with everyone.

 

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