Utter Autism

January 31, 2015

Return to Disney: Defining ‘Success’

Filed under: Forgot to pick a category — Carol @ 3:32 pm

As I’m making final preparations for our upcoming Disney World trip with Adrian I’m thinking about how things will go.  I want to be able to say the trip was ‘successful’.  But then I need to define what success looks like.

The last trip we took 5 years ago was difficult.  We were with many family members and we were trying to be flexible and go along with what everyone wanted to do.  Adrian was less flexible than we’d hoped.

I came back black and blue up and down my arm.  He pinched me hard enough to bring tears to my eyes more than once that trip.

There were several outbursts in public.  He even reached out and pinched a stranger – hard.

He banged on the window of the rental car so hard we had to wonder if he’d break it.  He broke parts of his wheelchair.

He pinched himself and pulled out his own hair.

When you put it all together like that it seems pretty ‘unsuccessful’. And it definitely felt that way at the time.  So what needs to change this time to say it’s better?  Do we need to have no public outbursts?  Does he need to not pinch me?  Does he need to not injure himself?  Do we need to have 100% peaceful car rides?  If the wheelchair returns in working condition, have we succeeded then? Is it still success if we get all that but have to use the ’emergency’ meds every day?

I’ve gone out of my way to plan everything on this trip to maximize success.  We’re taking Adrian alone and we’ll only do exactly what he wants, when he wants it – to the best of our ability.  We’re staying in the place where he’s most comfortable and where we don’t have to worry about how he’s affecting other guests.  We’re renting the car so we can have immediate transportation any time we need it.  We’re going at a time when the crowds are the lowest…  there just isn’t much more I can do to make this go as well as it can.

But in a way that makes me all the more nervous.  Because if this doesn’t work, if it’s not a successful trip, then I have to face the reality that it may be many years before we’ll be able to try again.  And, quite honestly, that would simply break my heart.

So here I am.

Still trying to define a ‘successful’ trip.

With hope.

And caution.

September 25, 2014

Old Notebooks : Eye Contact

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

January 20, 2000

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

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

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

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

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…

September 6, 2011

SCD – Logistics of Starting the Diet

Adrian has always been a very picky eater.  He has sensory issues that make him unable to eat, smell or even look at certain foods.  For that reason alone, starting this diet presented many challenges for us.

I know that the book that details the diet suggests a ‘starting’ diet and I’m certain that many devoted followers would wag their fingers at me for skipping it with Adrian.  But, as with many things with autism, you do what you can.

Step One: The Ingredients

Before we officially started I began finding some of the more rare items we’d need…

  • almond flour
  • coconut flour
  • coconut milk
  • sugar free vanilla
  • recipes

I felt it was necessary to identify several meals, snacks and drinks he’d accept before beginning.  I was glad I did.  I thought  pancakes would be a big hit.  Turns out Adrian wanted nothing to do with a pancake that didn’t come with maple syrup – no matter how good the pancake was!  So instead we went with muffin/cake type recipes and found a few winners right off the bat.  I was able to stash away some things in the freezer so I’d always have something on hand when we began the diet.

Step Two: The Equipment

I’ve already explained that I’m not a baker.  I just don’t enjoy it at all.  So equipment that makes this whole process easier is key.  Some we already had and  others I bought just for the occasion.

  • parchment paper
  • silicone bakeware
  • my Kitchen Aid standing mixer
  • my Rival crock pot
  • a set of Ball wide mouth jars
  • lots of freezer bags

Step Three: The Method

I found I could make this whole thing much more tolerable by following one simple rule.  Never make just one thing!  Each time I step in the kitchen to cook for Adrian I always pack the oven and fill the freezer.  I’ll use mixer for one recipe, scrape it and immediately start the next.  I bake no less than 3 items at a time.  With all the ingredients and equipment already out, it takes hardly any extra time to simply throw an additional recipe or two in.   Everything goes to the freezer cut in individual portions so we constantly have a variety things to choose from.


January 2, 2011

New Year… Thank Goodness!

Filed under: Forgot to pick a category — Carol @ 6:49 am

2010 was by far the roughest year we’ve ever had where Adrian is concerned.  We started out with a bang dealing with a bone infection and subsequent surgery, hospital stays, weeks of IV antibiotics, casts, doctor visits and other such fun.

Then on top of all that growth spurts, hormones and behavioral issues.  His OCD flew off the charts leading him to bounce through the house like a pinball, bumping here with his hip and there with his head, over and over and over again.  Darkness returned to our house as he couldn’t stand to have a single light on in the house at night. 

And did I mention the holes in the walls, the destroyed cabinets, broken beds, ripped couches, bashed keyboards, punched monitors, beat up fridge, hurled Dynavox, smashed windows, pummeled pictures, fractured frames, torn toys, scratched disks, stripped trees and crashed car door?

Yes, it was really, really bad.

But I’m glad to say goodbye to the worst year on record and ring in the new year hopeful that things are going to get better. 

Yes, hopeful…. even as he bounces here between the kitchen table and family room chair… over and over and over again….

March 21, 2010

Still Going…STILL

Filed under: Forgot to pick a category — Carol @ 4:16 pm

Last Thursday I kept Adrian home from school and we went to see the bone doc and the pediatrician.  I was terribly hopeful that some part of our torment would end.  No luck.  Here’s the actual email I sent my husband later that afternoon:

The guy we saw instead of Dr. L. today was a wacko.  You thought Dr. L. was weird.  This guy took the cake.  They took the cast off,he looked at it and then said that he really felt more comfortable just putting another cast on cause it’s not healed enough that it’s ‘safe’ for him to not mess with it AND he says that the extra support so soon after the surgery is needed, especially if he’s going through a cast in 2 weeks.  So Zee chose red for him.  At least it’s clean and unbroken now and they put some foam around the top so that it won’t hurt his toes when he walks.  So yeah, we didn’t get rid of it, but the situation is improved.

Then we went to Dr. M. and I kicked myself realizing that this wasn’t the week for bloodwork and, DUH, of course he’s gonna want to see that before he ‘releases’ us.  DOH!
He said if it’s normal then we can quit, if it’s normal to slightly elevated still he might make us go another week.  (sounded like he’d be looking for a reason to push it another week) We discussed how we could switch to a dif med and do orals instead or if he pulls the line again.  (You hear the distant sound of Carol thumping her head against the desk)  SOOO the sooner we get the blood work in his hands the sooner he can say what’s next so we went to the lab immediately and got his blood drawn – and yeah, ya know they can’t do it through the PICC line there cause that would be way too easy.  😐
And I’ve been dealing with a slight headache all day so I decided I’m prob gonna get sick and might better pick up the Claritin D on the way home.  After all we went through I also wanted treats.  Sue me.
So we stopped at the grocery store and I got treats and the meds and a jar of pizza sauce – cause yeah, that would be good to have on hand.
But when we finally got home (after fighting with Adrian in the car the whole way – even stopping to make him move in back) there was a hole in the bag wth the sauce and YUP it smashed in the garage leaving pizza sauce everywhere.
So now I’m having my ice cream and when that’s done I gotta do more antibiotics cause the lab won’t tell the doc till tomorrow if we can quit or not already.
See you when you get home.  Not sure what’ll you’ll get to eat as I’m pretty toasted and WILL NOT be cooking tonight.  No, you can’t make me.  I refuse.  It’s been a long day.  I’m done.  Have some ice cream… and some Claritin.
See you when you get home.  Drive safe.  Love you.

Yeah, I was a little disappointed to say the least.   The end of March and this madness cannot come soon enough.

March 13, 2010


Filed under: Forgot to pick a category — Carol @ 7:43 pm

Yeah, the second PICC line made it less than a week.  We found ourselves at the hospital again on Tuesday.  They managed somehow to squeeze us in to get it done at 6pm rather than have to spend another night.  I got a chuckle out of the thought that perhaps they called upstairs to tell them we were coming and someone called in some favors because they didn’t want us back.  Yes, that’s what you get when you have an over active imagination and way too many hours in a hospital room. 😛

Honestly though, all the folks at the hospital have been great.  On our second and third visits we saw several of them again and they were all so happy about seeing us.  Wish I could have returned the sentiment but we were, after all, at the hospital! 

We’re down to the last 24 doses of antibiotics to reach our 6 weeks.  I’m counting them down, watching Adrian closely and wrapping his arm with everything I can find to keep him from pulling this one out.  Next time I think we’ll just go for the full body cast and make life easier.

Wait.  There’s not going to be a next time, right?!   :O

March 5, 2010


Filed under: Forgot to pick a category — Carol @ 2:35 am

Thursday, February 4th we arrived at the hospital around 6pm. 

X-rays, surgery, 3 IV lines, a PIC line, a cast, more doctors than we could count, 2 antibiotics and one huge hospital bill later we went home.

All was well for 4 weeks.  We had a few close calls with pulling the dressing off the PIC line, but other than that things were going well.  We saw the docs last week and the x-rays looked good.  He’s back to walking even though we put another hard cast on to prevent him from picking at the incision.  The blood work looked good and the antibiotic is doing it’s job.  Adrian and I even got pretty good at doing the IV meds at home. 

Thursday, March 4th we arrived at the hospital around 6pm.  Yup.  Exactly one month to the day he suddenly decided he’d had enough and ripped the PIC line out.  DOH!

I’m really rather surprised it took this long to happen but still a bit bummed it had to happen at all.  Just another 2 weeks and we would have been in the clear! 

Looking at his arm I suppose I understand why he might have just decided enough was enough.  His skin was clearly aggravated by all the bandages, tape, wrapping and whatnot.  The nurses had tried to shift it when they made the weekly dressing change but there just wasn’t that many places for it to go. 

So we’re here in the hospital for another night, waiting on a new PIC line. 

The trip through the ER went MUCH smoother this time for Adrian.  He understood just what we meant when we told him that we’d be staying and sleeping in the hospital.  There were no crazy fits and no major incidents of aggression.  He got a bit silly here and there but settled down pretty quickly.

Clearly he doesn’t mind being here as much as the rest of us … and I’m thinking that’s not a good thing 😛

February 13, 2010

The New Normal

Slowly but surely we’re getting back to a new normal around here. 

Adrian is doing awesome with the PIC line in his arm.  It doesn’t seem to bother him a bit.  He doesn’t even look up from what he’s doing when I hook him up for the meds anymore.  I’ve gotten quite good at going through the procedure quickly and efficiently and I’m shifting the schedule for the meds to be a little less obtrusive in our day.

He is bothered by the cast but we’re getting around it.  I’m more comfortable leaving him alone for short bits of time having watched how cautious he is even when he does try to put pressure on the foot.  Ideally he wouldn’t do that at all, but all we can do is the best we can around here. 

Last night I actually left him alone upstairs in the bed asleep and got my first chance to relax at my desk in a week.  He’s still sleeping in our room for now but I can see that possibly changing if get his med schedule off nights and we can find ways to block him in his own bed.

He’s gotten quite good at zooming around the first floor in his wheelchair, even moving himself on and off the couch and going to the bathroom independently.   We set up a computer for him where he can just roll up to use it and with his chair moved out of the kitchen, eating is also a drive thru experience.

I’m still rather amazed things have gone as well as they have under the circumstances.  I’m still a bit tired and occasionally I think I may go out of my mind being attached to him 24/7 but then my wonderful husband steps in or the other kids offer to help.   Stealing a few hours to myself at night while he sleeps will go a long way towards making me feel like I have some freedom from being a mom and nurse too.

Yeah, the new normal isn’t so bad.  Only 5 weeks more of antibiotics to go 🙂

February 9, 2010

Hospital Adventure: Hospital at Home

If you’d told me a week ago that we’d survive 5 days and 4 nights in the hospital with Adrian, I would have thought you were crazy.  But not only did we survive it, things actually went fairly well under the circumstances.

Yesterday they applied a hard cast to his foot,  verified that the antibiotic he’s on is the right one for the job and set us up with some home nursing care once a week.  With all that out of the way, we were finally discharged last night. 

I had just enough time to get in the door, clean up, take a shower and prepare for the nurse to come.  Still short on sleep and stressed about working out all the issues with having him home, I anxiously awaited the arrival of the nurse who was coming to make sure I knew how to give him his antibiotics through the PIC IV line.

I can’t begin to say how relieved I was to find that the nurse they’d sent was an aquaintence from church.  I said, “It’s you!” , took a deep breath, fell against the wall and relaxed for the first time in what seemed like days.  The visit went well, she was great and by the time she left I felt that I could take the medication stuff off my list of things to worry about.

We’re pretty much doing the ‘hospital at home’ thing right now.  Someone is always with him, we’re keeping him moving and entertained as best we can.  We brought his wheelchair in the house and with some furniture moved out of the way he can access the kitchen, family room, bathroom and my husband’s office by scooting the wheelchair along with his good foot.

We’ve tried the crutches a few times with little success.  It takes quite a bit of coordination and he’s just not got it yet.  We’ll probably keep at it if only for something else to do to keep from going stir crazy.

We set up a bed for Adrian in our room so we could keep an eye on him.   It made it a bit easier to do his meds at 4 am too.  I’m still working on a way to get him back in his own bed.  I may try some particle board ‘walls’ around his bed to prevent him from getting up without us.

I’m hoping that we can work out ways to make things easier over the next couple of days… but even if we don’t I think we can probably survive a couple of months this way.   After all, we survived 5 days in the hospital!  Makes me think we can handle just about anything 🙂

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