The Nature of Keyboard-ness

This is a piano.  

Wait...or is it a keyboard?

Or is this a keyboard?

What makes a piano a piano?  What makes a keyboard a keyboard? 

What gives something keyboard-ness?  Or piano-ness?

Pianos are:

* Often, but not always, made of wood.

* Tend to have legs, but not always.

* Have keys, black and white.

* Those keys make sounds and music.

In contrast, keyboards:

* Tend to be electronic.

* Have keys, but can have keys with letters, numbers, symbols, and or be black and white.

* Can be used to make sounds, play video games, amuse mommy on the Internet, make daddy be really serious on the phone or make music just like a piano.

So which word more accurately describes this object?  

One of the things I hate about ABA is that they seem to be as stuck and rigid in their protocols as some of the kids they are suppose to treat.   So, a little background on his program…

J-man is in an Applied Behavior Analysis-Verbal Behavior program with a "natural environment" component to it.  That means he spends a small portion of his day doing "table tasks" (i.e. discrete trial stuff) and the larger portion of his day playing in the natural environment and putting those skills to work. There are some benefits to discrete trial stuff, but I often have huge issues with it.  Indeed, I have been struggling with a love-hate relationship with ABA-VB.  Don't worry, I am working on a blog post... heck, probably a series.... about the pros and cons of ABA-VB.  But that is a major project... and I just want to vent about this one pet peeve.  Consider it a taste test of some future blogging moments.

Every day J-man has a little written note that comes home with him that documents what he did that day, things he is accomplishing in his program, and what he is still working on (or struggling with). 

 Lately, he has been stuck on the word "keyboard".  So here is the "problem" (and I use that term loosely).

During his 'table time' (ITT, or discrete trial time), he goes through various exercises that are fairly rote, not terribly interactive, and bent on teaching simple skills like labeling objects.  J-man typically kicks ass on all these tasks.  We are often told he masters tasks very fast, sometimes within a day or two of being introduced a task.  

He really isn't there because he can't learn, people.

Anyway, the last week or so we have been getting updates saying that he is getting stuck on the word "keyboard", and could we practice labeling it at home.  Our therapists explain that they show him a picture like this:

And instead of saying "keyboard", he says "piano".

And of course, because the curriculum calls it a keyboard, they have to get him to call it a keyboard.

Are you kidding me????

One of our (sweetest) therapists explained that if it was in the "natural environment" (NET), they would accept piano.  Well, of course they would!!!  Because in the real world if I called this a piano, you would probably agree with me.  In fact, you may even call it a piano too.  It may not even occur to you that it is also a keyboard because let's face it:

THIS is a keyboard for most of us.

This illustrates one of my biggest pet peeves about ABA.  There isn't an allowance for creative or critical thinking.  Piano doesn't count because it is during "table time"... and the curriculum says "keyboard"... he has to say keyboard to show he knows what it is.  

Are you fucking kidding me????

And at what stage, exactly, should a child developmentally be able to make this distinction?  Do they actually know this? And why exactly is it important??  It wasn't like he called it a flute, for crying out loud.  Or a pickle.  Jeeezz...

The meaning of words (semantics) is a language skill that develops over the first 10 years of  life.  The ability to understand that one object can have multiple names, and that those names are not always stand alone in the what they can mean, develops over time...and speech-language pathologists don’t even test for this skill until a child is over the age of 5.  So developmentally, the fact that J-man is selecting to use a word that frankly... in my opinion... is a more accurate description of the functionality of this object and is less confusing than the term keyboard to me seems.... I don't know... extremely appropriate.

But then what the hell do I know?

I am just a mom, right?

Funk-a-licious

J-man is in a funk, too.

(Warning:  Philosophical rant ahead.  Proceed with caution. And wine... lots of wine.)

This situation with the school district has me quite in a funk.

F-U-N-K

It isn't entirely about the conflict, although certainly that is the nexus, the center round which the funk rotates.  It is hitting me quite hard, this idea that we are on our own on this.  I guess I had this illusion that everyone in a helping profession actually wants to.... err... help?  And maybe they think they are, in some twisted "we know better than you and your opinion is irrelevant" kind of way.  I can't even wrap my head around their reasoning, it is so foreign to me. 

And to be honest, their reasoning doesn't even jive with their policy and their own initiatives.  Clearly, based on website and literature from our district, preschool inclusion is suppose to be a "focus"...an ideal they are pursuing, striving for.  Indeed, while googling 'preschool inclusion' I ran across a site devoted to the idea of preschool inclusion.  Ironically, the director of early childhood at my district had even commented on the article (weird irony, I know).  I'll protect her identity, but she said in part (in relation to the difficulty in training, organizing, and supporting preschool inclusion, which they strive to do... italics mine)...

".... However, the comments from our partners (in the community) always tends to be that they need more support, a teacher full time or a para full time. Even the para model has been met with a lukewarm response as our partner programs want licensed teachers. Some of these models are very expensive and we are limited to the number of slots they will open for us (for good reason with their size limitations, too). As much as we do to train and collaborate it still feels like the old "your kids" versus the "community kids". "

Clearly (while I hate to admit it) the director is really frustrated with what she sees as an inability of the community preschool programs (be they private or public) to work with the district in a meaningful way. I get that, for sure.  Change is hard for any system.  Of course, there is a hesitancy to invest the money in providing the support.  A full time teacher or para is pricey (a worthwhile investment in my eyes for many reasons, but pricey nonetheless). And part of the frustration stems from the reluctance on the part of the community preschool staff to be a full partner with special education, I am sure.

Except, of course, our preschool wants to learn.  They really, really do. 

And we, the parents, want to collaborate.  To be part of the solutions.  We really, really do.  We have a successful home program that we would love to tell them about, to get them to try.  We want to tell them about him, and what we see as his real needs.  We want to be involved in the solution to the problems in the classroom, and as we are the experts on the J-man, we should be.

So I am not sure I buy the "your kids" vs "community kids" beef.  When we have a willing preschool, a willing family, and a desire to support J-man in his community setting but the lack of support to really help him progress, the district's answer is to segregate him.  Not to build skills here, provide support and opportunities to expand the practice of these teachers in the community, skills they might just use down the road, with the next 'J-man'.  Nope, just pull him out:  it is quicker, easier, and cheaper. 

There is this disconnect between the ideals espoused and the practice in place.  It is like those people who have their corpus callosum cut, resulting in the hemispheres of the brain being separate and unable to communicate with each other.  Each side operating on a completely different frequency, and neither side recognizing or communicating with the other.  Literally, the right side doesn't know what the left side is doing.

(Note:  I used the words "funk" and "jive".  Can you guess the era I was born in?)

Faithful



IEP Alert Level:   HIGH

(Update to post below)

So.  IEP meeting today. 

To discuss getting a few more hours of teacher time.  A little more time.  To give J-man what he needs to be successful.  To .... hmmm..... try harder.

I can't go into details right now.  Needless to say, though, it did not go well.

Here is what I can tell you.  No one believes in J-man but us.  No one is willing to have faith in him, that he can succeed where he is.  One of the school district "team" members even had the nerve to say to me "What... do you want him to fail???"

Excuse me??   EXCUSE ME???

So here is my response to you, "team" member.

Why do you assume that he will fail?  Why, when the question of where he needs service, and what kind of service it is, do you assume he cannot succeed where he is? Why do you have no faith in the ability of a well-crafted plan and a devoted team of people?  If we provide what is appropriate, why do you assume he can't?

This is starting to become a fundamental issue that I am noticing:  The focus on deficit instead of potential.  The focus on everything that is wrong or bad or disordered instead of what is possible, on strengths, and on rising to the occassion.  You know, if you have low enough expectations, you can always meet them.  But we insist on high expectations, and apparently that is a problem.  Oh, and that we are involved, that we have opinions that differ, and expectations for performance.

*************************

Update:  Title Change  

My dear friend JK emailed me after I posted and took exception to my title "Faithless".  She said (in part) the following:  

...I found the title of your writing interesting because in my eyes, it is "faithful". Faithful to the fight and to the life and future of your son. Don't give those who are say ignorant and negative things that much power, credit or even a headline. Shout it from the top of your lungs how much you love and adore your son and how every inch of him is worth any frustration coming your way. I can't imagine your frustration, but you will prevail. You've never given yourself the option not to.....

You are most certainly right, JK.  Title changed, and negativity will never get top billing again!  Thanks, I needed that gut check :)
 

One for Team J-Man

I know you have been waiting.

You have been wondering.

What happened?

Did we get what we asked for?

So let me take you back to last week, Meeting Day. Head Honcho leaves with promises to "look into" what they could do and if they could "work out" an exception, and to get back to me as soon as possible. And she did. The next morning I received a call from Head Honcho, and it goes something like this (note liberal use of paraphrasing):


HH: Good morning. I wanted to let you know that I have looked into the issue of getting J-man summer service at his child care....

Me: Yes?? (note hopeful sound in voice)

HH: ... and I consulted with Advocacy Agency and two other school districts and they all said that summer sessions are not required to provide those services, so we will not be making any accomidations in the plan that we can provide. We can offer your son ESY in a special needs classroom.

Dead silence on my end.

The Green-Eyed Monster Momma woke up, stretched and muttered "What the *%$....?!?"

HH: ... I know this isn't what you wanted, but it is what we are willing to provide...

GEMM: So, what you are saying is that you just called Advocacy Agency and they said you don't have to do it? And you aren't going to try to help us ...?

HH: Well, yes... you may call Suzy Advocate and talk to her yourself. Her number is .....

GEMM: Yes, I will call her and get back to you. (note cold tone of rage in voice)

So, GEMM calls Suzy Advocate. After an hour of discussion (or arguing... whatever) with Ms. Advocate, she has basically told us this: Because the Extended School Year Rule does not address Least Restrictive Environments, they don't have to comply.

What?!?!

Basically, the argument is that the rule doesn't talk about it, so they don't have to do it?

To me and GEMM, that is complete BS.

I called the Department of Education and talked to the specialist there. I explained the situation, and my confusion about why they would say that they did not have to comply with IDEA/LRE in the summer. She laughed. I asked her if she could provide me with something that explains it. She said "Well, the reason you can't find anything is because there isn't anything! That is not true, and if I was you I would request a mediation meeting" (fancy talk for a sit down with the Department of Ed and hash it out... not to be confused with a Due Process meeting, which is bigger and scarier).

'Nuff said.

A little research later (and lots of Law reading), we wrote a Letter. Allow me to dazzle you with just the highlights:

J-man qualifies for ESY via the "Self Sufficiency requirement. Specifically, J-man needs to maintain skills regarding his IEP goals for social development and communication as reflected in Minnesota Administrative Rule 3523.0755 Subpart 2 D 6 'development of stable relationships with peers and adults" and 7 "basic communication".

ESY is able to comply with IDEA 2004 requirements for Least Restrictive Environments. J-man's educational setting does continue into the summer. Additionally, Minnesota Rule 3525.2335 governing Early Childhood Program Services, Alternatives and Settings states in Subpart 2 B 3 that "A school district must provide direct and indirect special education services by district special education staff attending a community based program". There is no stated waiver or exception for ESY services noted in this or any other rules. Additionally, nowhere in the ESY Rule is there any reference that suggests they are exempt from complying with the requirements of IDEA 2004 for a Free Appropriate Public Education. Indeed, the Minnesota ESY rule apparently only addresses criteria for these services, not the services themselves, and therefore should still need to comply with IDEA. Additionally, IDEA states when implementing ESY services the public agency may not "unilaterally limit the type, amount, or duration of those services".

Yeah. Bite me.

It was sent, and we waited. And waited.

And today... SUCCESS! Apparently, they have found a way to "work it out" for us.

Yep, I thought they might.

Most excellent.

GEMM, Kicking @ss and Taking Names

When GEMM rears her head, it is rarely a welcome thing.

However, sometimes her fire is just what is needed.

As I suspected months ago, the attendance policy at Family Speech became a problem. After 6 months of not missing ONE Speech or OT session, Jonathan got sick last week. He oozed green stuff out of his eyes and nose. He ran a fever of 102. He ended up on antibiotics for the second time in his life. He missed one session. ONE!

I called the day before and told them he was sick with fever and oozy green stuff. The receptionist (whom I admit annoys the crap out of me) immediately said, "So when would you like to reschedule to avoid the cancellation fee?". I proceeded to inform her... yet again... that we felt that the policy was unreasonable. She was unmoved. I informed her that we already attend twice a week and the other two days he is in daycare all day. I said the only time he could possibly come was after 4pm on those days.

"Couldn't he miss daycare one of those days?"

"Errr.....no"

"Well, I guess we just have to put you on the waiting list for a cancellation."

Well, swell. Just what I want, to sit on some waiting list to make up a session with a therapist Jonathan doesn't know for a session we really don't need to make up.

Emails flew. Voice mails were left. And management would not budge on the policy.

Well, that is not entirely true. The manager stated that they could make "an exception" to the policy if no time could be found to make the session up. And that is when it hit me... basically, this whole policy is about control. Now, for them, they want to control their money stream. They want to be the one who call the shots. They want the power to decide what is.. and is not... a 'good excuse'. And they want us to bend over and bow to their will.

So we quit.

What they failed to realize is that they really don't have any more control then we give them. They can create all the policies they like, but WE control the purse. I am so angry that there hasn't been a general uprising by the other parents who attend their office. Most of them probably assume they have no control, no choices... just what the management wants. Talk about taking advantage of vulnerable families.

With GEMM on my side, I am absolutely determined to not allow people more power over our family then absolutely necessary. I encourage all to do the same.

1 in 100?

Recently I posted the following video clip on Facebook.


Watch CBS News Videos Online

A dear friend of mine, a grad school buddy, suggested that this study mentioned was seriously flawed (indeed that is true) and that the reason we see these increased rates is because of "a broader diagnostic criteria & greater public awareness". He is certainly not the only one to feel this way... that the rates of autism are some kind of statistical anomaly and not truly reflective of "pure autism". And indeed, while these reasons may be a factor in the rate change and prevalence of autism, I would suggest that those reasons are wholly unsatisfying to both why the rate changes are being seen and what these rate changes actually mean.

Of course, there are two possible lines of reasoning for the changes in the rates of autism.

Reason One: the reason no one wants to be true is that there is a real, honest-to-goodness reason why we are seeing more autism. The possibility that... for some unknown, scary reason... children are having some major neurological event either prenatally or in the very early developmental years that results in the unique autism symptomology. The theories range from the the plausible (prenatal exposure to some kind of teratogen, possible autoimmune issues coupled with environmental or viral insult, mitochondrial issues), to the unique (folic acid overload, Vitamin D deficiency) to the crazy-ass (just Google for the nutcases).

People with no children or typical children are scared to death of Reason One... because lets face it.... if it is Reason One, it could happen to your children. It is nicer to think that it is all genetic, and you are safe, and the rate increase is all about Reason Two.

Reason Two: The new rates of autism are a statistical anomaly, the result of over diagnosis or misdiagnosis, or both (whew, thank god.... it isn't real.... anyhoo.... ).

Ok, let's make the assumption that the true occurrence of autism in the world has stayed stable for the last 1000 years (in essence, there is no other reason for more autism). Given that assumption, what are the reasons for the current changes in overall rates in autism diagnosis? The possibilies, as far as I can tell, fall into the following categories:

1) Autism has been historically under-diagnosed. Basically, this assumption suggests that the current rates are more accurate, and that the previous rates (of 1 in 150 kids) suggest a lack of overall diagnostic ability by professionals in the field and that the broader inclusion of mild to moderate cases actually does reflect the same neurological conditions that lead to these specific disorders. Thus, this suggests 50 years ago we either had:

A) A lot of mild to moderate autistic children running around not getting services, and ending up labeled learning disabled, emotionally disturbed, or ultimately becoming diagnosed autistic due worsening symptoms, or

B) The mild to moderate ones "grew out of it" (which experts say can't happen, but whatever)

2.) Autism is being grossly over-diagnosed. Basically, this assumption suggests that there has been a complete frenzy to diagnose kids with autism, even though they might not meet strict criteria. Diagnosticians are misdiagnosing kids because they either are poorly trained in recognizing 'true autism' or are motivated to "get kids services" and the easiest way is to give an autism label. Therefore, the "new autism rates" are a reflection of a misapplication of the diagnostic criteria and a "problematic" and gross broadening of the criteria.

Of course, this assumption then suggests that the kids that are being NOW diagnosed as "mild to moderate autism" are, in fact, either:

A) Just fine... nothing is wrong with them that a swift kick in the ass won't cure;

B) Suffering from some other condition that causes significant language delays, social delays, and/or sensory issues (see my review of Autistic-Like Graham's Story) and apparently we have no words for and no historic precedent for, or;

C) There are always weird kids... that is all they are and were 50 years ago.

3.) Early identification is the reason we see a rise in Autism rates. So, in the last 10-15 years, a lot of education has gone toward getting doctors and educators 'up to speed' on autism spectrum disorders and working toward an early intervention model that allows these kiddos to get services early and improve outcomes. Ok so, more awareness, more reporting, increased rates. Makes sense.

Except, and here is the part I cannot get my head around... then what happened 50 years ago? So, 50 years ago, a kid was not identified as autistic early... in fact, nothing was noticed until school age. Well, there was 1 of 3 possible scenarios:

1) Kid was not truly autistic, or "grew out of " the symptoms by the time he/she reached school age.... enough so the teacher just thought the kid was weird, but not disabled. Probably didn't do awesome in school either. Experts say that can't happen... neurology is neurology... but whatever.

2) Kid was truly autistic and was stimming like a mad-fiend when he entered kindergarten. Which, if this ended up happening the rates would go UP, right.... just the reporting TIME would change, not occurrence.

3) Once the kid entered school and still had some difficulties and behaviors, he was dealt with as LD or emotionally disturbed.


So, does that mean that we are just re-labeling the problem with new words? If the rates have truly remained the same for the last ... oh, say....1000 years, what accounts for these new kids? Are they faking? Misdiagnosed? Brats? Had they been diagnosed as something else 50 years ago? Or not at all?

That is what makes me most curious. IF the rates are really statistical anomalies, then what would we have called these other "new" kids?

Or, is it possible that these mild to moderate cases are really something NEW? That 50 years ago we didn't see these kids because they weren't there... that something more has happened than just some re-labeling shuffle.

I really don't have any answers, but I can say this. In my humble experience, parents of a child who is given an autism diagnosis rarely sit back and just accept it. Generally, every parent I know looks for second, third, and fourth opinions. Indeed, I would guess that the increased awareness even fuels THAT... going out and finding better doctors, more complete evaluations. And even if there is funny business going on (and I am sure there is)... there is a reason for it. No one I know WANTS their child to have a disability. What they want... what they need... is help for their lost child.

So, what is My Big Opinion?

Call it Autism. Call it Apraxia. Call it Sensory Processing Disorder. Hell, call it the Snowman Syndrome for all I care. But recognize that all of this really does mean something for that 1 in 100 family, regardless of what you call it. Regardless of whether these children are being correctly diagnosed, mislabeled, or are the mark of some new, scary epidemic, we cannot and must not poo-poo these rates. These rates DO mean something. They mean that for one family in one hundred, life will never be the same and they will face struggles that other families will not. It means that their child... whatever the reason... is struggling with something that impacts their ability to learn, ability to form relationships, and ability to interact with their world. For all of our fine categories and fancy diagnosic labels, let's not forget to keep our eye what is really important.