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!  😀

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.

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.

March 25, 2012

Moving.

After the usual red-tape roller coaster, we’ve got a move in date for Adrian at his new residential school less than 2 weeks from today.

I think my daughter said it best when she told me about a discussion she had with someone about Adrian’s move.  “Mom, I was smiling and crying at the same time.” Yeah, that about sums it up for all of us here.

It’s happy.  We really think Adrian will appreciate all the extra activity, attention and structure of his new home.  We think that having a new set of folks look at him through fresh eyes is going to mean gains in academic, self-care and behavioral skills.  We think that the change it’s going to make in our household, especially for the other kids, is going to be life changing.

But it’s also sad.  We will miss Adrian.  We feel badly that we couldn’t single-handedly provide everything he needs to be as successful as he can be.  It’s a decision you wish you never had to make, even if you know it’s the right one.

We realize that neither the smiles nor tears are going anywhere any time soon.  In fact, I’m fairly certain that this transition will be easier for Adrian than any of the rest of us.  It’s going to take us months to reimagine a different way of living – without Adrian here.

February 13, 2012

Moving To An Alternate Reality

It’s no secret that these past couple of years have been very difficult with Adrian.   But you’re a parent. You suck it up and deal with it.  So we did.

But then Adrian began asking to go to school… as soon as he got off the bus in the afternoon.  And he’d ask to go to school all evening. And first thing in the morning.  And all weekend long….

It sorta hit me all the sudden one day that his message wasn’t just ‘school’.  He craves the structure, the predictability, the schedules, the activity, the constant attention,…    I realized that we just can’t offer him what he needs here at home and it’s a big part of why things can get so rough around here.

So I began investigating residential schools.

Now, stop right there.   That’s such a simple statement to make and yet it was an unphathamable thought right up until my epiphany.  See, we’re do-it-yourself parents.  We’ve always been heavily involved in Adrian’s education – we don’t rely on the school to handle it all.  I’ve driven him to school myself for the past 13 years.  We homeschool our other 3 children.  We just aren’t in the habit of handing over our kids or any part of their education to anyone else.  No matter who else is involved, it’s still our responsibility.

This was a huge step for us.  After looking into it all, making some visits, speaking to some experts and thinking hard on the idea for a bit… we came to the conclusion that it was undeniably in Adrian’s best interest to pursue this.

Just a few short months later, the process is moving ahead.  There’s still the potential for a hiccup here or there, but chances are pretty good that in a few months time, Adrian will be moving to a residential situation at a school not too far away.

*GASP*

While I really don’t want to count chickens before they hatch, I’ve also come to the realization that I do need to spend some time considering what this all means – what things will look like and how we will live.

Because, folks, this will change EVERYTHING.  It’s nothing short of moving to an alternate reality…. and if I don’t spend some time getting used to the idea, I may very well have a breakdown when it happens.

September 10, 2011

SCD: Today’s Baking

In the time it took my husband to prepare yummy pasta and shrimp in a lovely cream sauce for the rest of the family, I did my baking for Adrian’s SCD.  I made….

1.Peanut Butter Brownies (I double the recipe so I can use the whole 16 oz jar of peanut butter at once.  It bakes up perfect in my 9X9 silicone pan.)

2.Ginger Cookies (you can probably guess we didn’t roll and cut them out cause, yeah, I’m too lazy LOL)

3. Lemon cake  

6 eggs
1/4 cup lemon juice
1/2 cup honey
1 tsp vanilla
1/4 cup plain yogurt
3/4 cup coconut flour
1 tsp baking soda
1 tsp lemon extract
1/2 tsp sea salt

The recipe I derived this from is found here and is for orange cake.  We made it as orange cake a few times and it was good.  I was curious what it would taste like if I substituted lemon for the orange.  Answer?  Super yummy cake that everyone loves.  We tried that marshmallow frosting a couple of times and found it was too sweet for our tastes no matter how little honey we added.  The cake is better all on it’s own.

4. Flatbread

WET INGREDIENTS:
12 eggs
¾ C oil
¼ C coconut milk
1t lemon juice

DRY INGREDIENTS:
1 C coconut flour
1 C almond flour
1 t baking soda
1 t salt

I found this recipe here but it looks like the webpage has expired so I’m recording the recipe here in case it suddenly disappears.

That was my baking for the day.  We had the lemon cake for dessert.  Everything else was sliced and stocked in the freezer.  One more baking session tomorrow should leave me in good shape to start the week.

Meanwhile, we’ve gone 3 days now with no ’emergency’ behavior meds.  He’s been calm and happy. Even the doctor noticed the difference when Adrian was there for a checkup last week. I’m usually doing an octopus impression while speaking to the doctor, getting pinched and pushed all the while.  This time Adrian waited calmly for 30 minutes in a packed waiting room (not the norm for this doc but they all have bad days I guess) and then sat quietly while I spoke with the doctor.

Over the course of the summer, the teacher was happy if they could keep the aggressive behaviors to less than 4 per day.  It didn’t usually happen.  Adrian’s already had 3 days of school without any aggressive behaviors. 

The difference is huge.  So much so that my husband and I are just sorta waiting for something bad to happen.  To think that it can stay this good would be a dream come true.  As my husband puts it, we’re cautiously optimistic.  We don’t want to risk disappointment if the spell is somehow broken here at one point.

But that doesn’t mean I’m not going to enjoy every minute.  🙂

 

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 22, 2008

He’s the Typing Type

The keyboard screen has become a favorite on Adrian’s Dynavox V.  More and more often we see him go to this screen to type out things he wants. 

Sometimes he needs to check his spelling by going to other pages on the device where the word appears but amazingly, he chooses to type the word out instead of just using the pre-programmed button for that item.

Every few days he’s typing in things – without checking the spelling – that we didn’t know he knew.  I couldn’t even venture a guess now about how many words he can read or type.  It’s all happened so suddenly that our heads are still spinning.

He continues to use the keyboard screen to answer the all important question, “What does that say?”  I considered putting a button on his device for him to ask this question…. but then I realized, he’s already got a perfect strategy for answering the question for himself!  Several times now, we’ve seen him copy words he clearly doesn’t know from items or websites – just to find out what they say.

Amazing stuff 🙂

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