Utter Autism

December 10, 2015


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!  😀

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


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. 


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 🙂


December 28, 2012

The Difference a Year Makes

“He’s being medicated multiple times a day and put in the shower (our ‘safe-room’ when he’s out of control) multiple times a day. I must take him out for a drive at least once a day.  Some days when he’s particularly out of sorts and he’s already had more meds and another shower we’re driving multiple trips totalling an hour or two.”

That’s what I wrote here just a year ago.  When I wrote it I could not have even imagined where we are today.

Adrian has been in his residential school placement since April and doing very well there.  He’s always happy to go back.  He seems comfortable and happy.  We love the staff and they seem to love him.

We’re still playing with the medications, looking for just the right combination… the biggest impact for the least amount.  This last one we tried seems to be helping quite a bit.  We were able to have Adrian home for 2+ days at both Thanksgiving and Christmas.   He was pretty calm and we had no major incidents.  It was a relief considering that we’d had single night visits before which hadn’t gone that well.


There’s still much to be said about this whole process.  I often think about how I need to sit down and write about it all.  Part of the problem is finding words to describe the complicated reality of it all.  The other part is the fear of being misunderstood.  A year ago, I’m not sure I could have understood myself.

But the more time goes on, the more confident I feel that we made the right choice for Adrian… and for us.  The change has been overwhelmingly positive for everyone.   I’ll start the new year remembering what a difference a year can make… and with hope things will continue to get better and better.

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 🙂

June 10, 2012

Vexing Visits

It’s another home visit weekend and Adrian’s here hanging out with us.   But I wish I could know exactly how he feels about that.  Before he moved out, it was just what we did.  There wasn’t another option.  Now there is.

When the alarm went off Saturday morning for me to go pick him up, I was having a bit of a nightmare.  In my dream our family drove to Adrian’s residence to pick him up but he wasn’t there.  He was with his housemates and classmates at a theatre.  So we drove over there and I ran in to get him.

But it was the dress rehearsal and Adrian was in the show.  Adrian was calm and happy, participating and following the instructions staff gave him.  Was I going to take him away from that?

As dreams do, I skipped to the next scene where they were having a dinner after the rehearsal.  I remember trying to use my phone to call my husband and let him know what was happening.  They were all waiting in the car.  But Adrian was enjoying his dinner, interacting with staff and having a good time.  How was I going to take him away from that?

Turns out real life isn’t that far off from my dream.  This Saturday Adrian’s house had plans to go to the zoo.  He was coming to our house instead … but is that what he would have preferred?  We just don’t know.  Adrian isn’t at all reliable about answering such questions.

At his residence he’s calmer.  He uses far less medication than when he lived here with us.  When we go there to take him out for a few hours, he’s always good.  It’s not until he’s back here at home for a while that the aggression pops up again.  Why?  I don’t know for certain.

What I do know is that we’ve somehow got to balance our visits with the other opportunities Adrian has now.  We need to find ways to spend time with him that minimize the aggression and stress and maximize everyone’s enjoyment.  One possibility is that we could pick him up on a Friday night for home visits and bring him back Saturday early.  That would reduce the ‘down’ time at home that seems to breed the behavior problems and also make sure he’s home to go on whatever weekend excursions his house has planned.

It may take us some time and experimentation to figure out that perfect timing, schedule and frequency of visits.  But I’m confident we’ll eventually find a way to regularly enjoy visits with him.  🙂


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.  🙂

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.


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.

November 7, 2011

Changes Coming

Both my sister and my son are developmentally disabled.  I spend a lot of my time advocating for them both.  This  involves many conversations with their care providers each week.   I deal with dozens of people,  from multiple agencies in both the adult and child disability spheres.  Generally speaking, I think I’m pretty on top of things.

So when I happened across a notice on a parent-to-parent network message board talking about upcoming changes in disability services, I immediately went to check it out.  

And I was shocked to find that major changes are being implemented in the system in a few months time.  When did this happen and why am I just finding out about it?!

It’s no secret that what’s spurred these changes on is the potential to save the state money.  Of course, they’re doing whatever they can to push that under the rug and instead throw pretty words like “choice”, “freedom” and “independence” at you.

Medicaid, which pays for the services both my son and sister receive, will no longer simply pay for those services.  These services include a residence with 24/7 care, day programming, medical and dental services (which are hard to find for the disabled), speech and occupational therapies (you recall that my son is completely non-verbal and will likely need to continue to perfect his communication skills for years to come), transportation, service coordination, behavioral interventions, psychiatric care, … and the list goes on.

As I understand it, the system will become a ‘managed care’ system (think HMO).  So now Medicaid will ‘assess’ every disabled person and assign them a dollar amount.   They pass that dollar amount to an approved agency who then has to figure out how to provide ALL the services with that amount of money. 

To save more money, they’ll be pushing for the least amount of support possible.  They’re calling this freedom, choice and independence.  This will include moving more towards living at home or in less supportive residential situations.  It means doing away with as many ‘institutional’ and structured day programs as possible and getting them ‘into the community’ as much as possible.

Obviously, with 2 family members directly affected by these changes, I had many questions.  Fortunately I found out about the whole plan right before Commissioner Burke had a live chat on the subject.  You can find the transcript here.

So let’s look at what I found to be some of the more telling questions and answers.

First, it seems I’m not the only one who feels blindsided by all this:

Submitted by Holly on Sat, 10/22/2011 – 8:42am

when and where will advance information be posted for families to have input to Medicaid 1115 waiver planning? I only learned of this web chat on 10/21, and some families may be unable to participate due to religious observances. Thank you.
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:14am

Holly, it’s great to hear that you want to get involved. We are making the waiver process as public as possible. You can learn what has happened so far at http://www.opwdd.ny.gov/2011_waiver/index.jsp. Additionally, we have five public presentations occurring over the next few weeks, as well as many future events in the works. The information about those events can also be found on the waiver website. You can also sign up to receive alerts via email.

Of the 24 questions she answered, 3 were asking where, when and how to get information and give input on the system being developed.   Clearly their efforts to ‘make the process public’ has failed.  Once I found out I immediately contacted some of the service providers we work with.  THEY don’t even know.

But more disconcerting was what those implementing this new structure don’t know yet. 

Submitted by Carol on Sat, 10/22/2011 – 9:03am

Giving people with developmental disabilities more freedom, choice and independence sounds like a wonderful goal. However, those of us who have family members with these disabilities understand that the nature of their disability means that giving them this is often NOT what is in their best interest. By definition, they have a inability to think, reason and function as a typical adult. They are developmentally not able to make good choices about their own living arrangements, goals and expectations for life. I’m one of many people with a loved one who is higher functioning and as such, I’ve not gone through the extensive work and expense to become her legal guardian. What safeguards will be in place to be certain that she will not be talked into a ‘less restrictive’ environment she can not handle? For people without a legal guardian, who will be determining what freedoms and choices a particular individual can really handle? How will crisis situations be handled if/when developmentally disabled adults end up in situations with more freedom and independence than they can handle?
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:28am

Great question. Because the waiver is still being designed, we are considering these very issues. A primary goal of the 1115 waiver is to evaluate each individual’s abilities to determine the most appropriate level of services. This should lead to individuals having better access to more integrated lives. We are aware that we need to make sure the waiver also provides appropriate safeguards for crisis situations. People who conduct assessments will be properly trained on new assessment tools that will better determine what supports individuals need.

Don’t worry, they’re ‘considering these very issues’!  Um, yeah.  Watch the videos they’re putting out to promote these changes. They’re ready to pull the trigger on the beginning stages of this in a few months time but they’ve not figured out the answer to this beyond ‘properly trained’ people and ‘new assessment tools’.  That’s just scary to me.

Another thing they’re still working out is how to make the funding of this work.

How do we make sure that nedded resouces go dircetly to service provision and don’t just end up in the pockets of program administrators? Greater transparancy is needed.
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:22am

I absolutely agree that greater transparency is needed. We have begun to make information publicly available on our website about nonprofit providers and their performance. We will be rolling out additional information about the quality of services for providers in the coming months, as well as information about use of resources. In addition, I am participating in the Governor’s task force on executive compensation for nonprofits, which is looking system wide at their use of Medicaid dollars.

 I’m not only worried that the dollars going to the agency could end up eaten up by administration costs.  I’m also worried about how these agencies will deal with being short the funds to provide all the services.  They may be non-profit, but the ‘profit’ becomes whatever they can ‘save’ in money not spent.  They will be highly motivated to provide the least amount of services.  The state is banking on it.

Thank you for speaking with us this morning. I am the mother of a seventeen-year-old son with moderate/severe autism and I am employed full time by one of your provider agencies as well. I’ve been told by a Trustee of another provider agency that, despite the plethora of information you’ve disseminated to the contrary, when April 1st arrives, all stakeholders, not just those who choose to participate in a DISCO pilot, will provide and receive services under their regional DISCO. In other words, all agencies will lose their rates as of April 1st and be will be mandated to join a DISCO in order to continue providing services. Can you please state whether this is true, and if it is true what specific plans are in place to ensure continuity and availability of services. It’s hard for this mother to envision provider agencies losing their rates for a presumably much lower rate under the DISCO, without jeopardizing their fiscal sustainability and ability to serve their clientele and expand to meet the needs of the tsunami of children aging out of the educational system. Thanks again for your time.

Submitted by Courtney Burke on Sat, 10/22/2011 – 9:06am

First of all, we aren’t certain the waiver will definitely begin on April. Second, a demonstration period will happen first, so not everybody will be participating in demonstrations in the first year. Third, the purpose of the demonstrations is to see how well a new rate setting process works well and where it’s shortcoming are.

 I’m disappointed that she didn’t really answer a question here.  She’s not “certain the waiver will definitely begin on April.”  So what?  It’s probable?  Not probable?  When will you know and what determines if it will happen or not?  Does anyone know?

Then the demonstration period will happen first.  But not ‘everyone’ will be participating.  Of course, that could mean most everyone would be participating or only a few would be.  Which is it?  And more importantly, what say will the disabled and their advocates have in participating or not?   Cause that seems kinda key when you’re doing it to find the shortcomings.  I don’t want to be the guinea pig.

So my next concern is the push towards employment.  I’m not saying this is a bad thing.  It may be a very good thing for some individuals.  My problem is that they seem to really be missing some realism in their plan here.

Submitted by Marisa Oni on Sat, 10/22/2011 – 8:43am

How does OPWDD plan to promote employment for people with disabilities
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:38am

Employment is a major priority of the agency. We are part of a national network that plans to double the number of individuals in our system who work – from about 9,000 to 18,000 people. This coming week OPWDD will hold its annual Works For Me awards celebration, honoring the great businesses who hire individuals with developmental disabilities and their employees. Information about the event can be found online at http://www.opwdd.ny.gov/news/new_opportunities.jsp We are looking to strengthen partnerships with private businesses and other state agencies to ensure individuals have the skills they need to successfully maintain employment.

 With the current unemployment rates and tons of typical adults unable to find work, how on earth do they think the occasional pat on the back is going to encourage employers to hire disabled people who were previously unable to secure employment? And they’re going to “ensure individuals have the skills they need to successfully maintain employment.”  Great.  Um, how do you do that?   Will there be a ceremony to hand them out their skills and send them on their way?  Most of the disabled folks I know would love to be employed.  They just don’t have the skills to be competitive in today’s job market and they likely never will.  That’s a pretty common thing among the developmentally disabled. 

Ironically, with all she doesn’t know, Commissioner Burke felt perfectly qualified to answer this question:

Submitted by Scott on Sat, 10/22/2011 – 8:48am

Why are autism rates increasing?
Submitted by Courtney Burke on Sat, 10/22/2011 – 9:17am

I believe it is not that the rate of autism is increasing, but diagnosis. Like many developmental disabilities, there has been a historical lack of understanding and knowledge. As society becomes more aware, more diagnosis are occurring which better sets us up to provide individuals and families with the supports and services they need.

Whoa!  Did she just arrive at this party?  Does she have no clue this is a much contested point of view?!  The fact that she thinks she knows the answer to this doesn’t inspire much confidence in her ability to understand and serve this community. 

I get that the state wants to save money.  I get that they’re reacting to some bad press about some bad things that happened on their watch.  What I don’t get is if they have any clue what these changes will mean for the developmentally disabled and their advocates.  What will really happen, not just all the pretty words and idealized ‘outcomes’. 

I have a sinking feeling Commissioner Burke doesn’t have a loved one she has to worry over being re-assessed.   She doesn’t have a son who needs the more structured, institutional settings to be safe.  She doesn’t get how incredibly difficult it is to advocate for the developmentally disabled even with support.  Like so much about her plan, she just doesn’t know.

I hope she knows how to listen…

Blog at WordPress.com.