My name is...

Sorry for the lack of posting recently, but it's been crazy around here.  Most notably, we had bugsy's IEP on the 24th.  I would need days upon days to tell you all about it, and I'm sure eventually everything will come out, but there is a specific incident from our IEP that I wanted to share.

Does it irk anyone else that during an IEP, you're always referred to "mom"?  But the classroom teacher and the rest of the specialist and staff that are present are referred to by the first names? 

At first I thought maybe I was just being overly sensitive, but as the days passed and I mulled the issue over in my head, the more incensed I became about it.  Mom is just one of the many hats that I wear.  While I am rather proud of the role, it is certainly NOT my only identity.

How do you feel about this?  Am I really just being overly sensitive...?

My silent afternoon

I'm currently studying for my Masters in Special Education, and this semester I'm taking a class on Augmentative and Alternative Communication (AAC) Strategies.  Since Bugsy got an AAC device over the summer, I thought this class would be beneficial not only professionally but also personally as well.

One of our first assignments is a non-speaking experience, where we had to spend the afternoon not talking in an effort to gain a personal understanding of an individual’s inability to communicate orally in the community.  While the use of a communication board, communication book, notepad, or technology tool was permitted, I chose to undertake this experience by simply not speaking to garner a more authentic experience that most nonverbal students have, especially younger children who may not have access to assisted communication yet because they are deemed “too young” or “too impaired” or “developmentally not ready”.

ASHA issued a statement that “no individuals should be denied the right [to augmentative and alternative communication], irrespective of the type and/or severity of disability(ies) they may present”.  Similarly, the National Joint Committee for Communication Needs of Persons with Severe Disabilities stated that “eligibility for communication services and supports should be based on communication needs alone, rather than on criteria…[or] prerequisites”.  However, in reality, many young children are still overlooked for AAC assessments, often leaving them with no outlet for communication. 

I also made the decision to not announce the fact that I was not speaking for the afternoon.  I wanted my experience to be as authentic as possible, and most nonverbal students do not have a method of telling others that they cannot speak. 

During my afternoon as a nonverbal individual, I went to our local grocery store to grab some things we needed.  However, I couldn’t find this particular type of sausages that I wanted, and they were out of the type of rolls that I wanted.  I also realized I would like some meat from the deli for sandwiches the next day.  In a normal situation, I would find the nearest helpful clerk and inquire about the location of the sausages, and also if they had more of the bread.  Then I would trot over to the deli, get my meat, and go on my merry way.

However, since I was not speaking and had no other way of communication, I had to settle without my sausages, bread, or meat.  I thought about going to the deli to try and indicate what I wanted and how much I wanted with pointing, but I had an inkling it was going to be a fruitless exercise in frustration.  With this particular store, I had enough trouble getting my deli order correctly when I was speaking; I basically had no hope when I could only point and gesture.  So I took the easy way out and went to pay for the few things I could find.  Or I thought it was the easy way until I was asked “paper or plastic” and I had to vaguely gesture to the paper bags I wanted – the poor clerk had no idea what I was doing.  I ended up walking over to the bagging area and physically picking up a bag to indicate my preference, then paid for my purchases and went home.

The most memorable aspect of my experience was my personal preference to take the easy way out and just defer any attempts at communication before even an attempt.  I have to wonder how many nonverbal individuals just let things go. 

I was also made aware of how much attention a potential communication partner has to pay to the communicator.  The checkout clerk wasn’t looking at me the first time I pointed, and the second time she misunderstood where I was pointing.  I didn’t even bother trying a third time, and walked over to the bagging area to physically show the checkout clerk what I wanted.  I was fortunate enough to have the physical mobility to physically show what I desired, but this is not an option for some individuals. 

This experience reinforces my belief that every attempt at communication, verbal or otherwise, needs to be immediately recognized and heavily reinforced, especially in young children, in order to avoid an apathy to making future communication attempts.

Have you ever tried something similar or had a non-speaking experience? 

To-may-to / To-ma-to

http://disabilityand.me/why-first-person-language-sucks/

I'm currently studying for my Masters in Special Education, and in many of our coursework an emphasis is placed on First Person Language, or People-First Language. 

For those of you unfamiliar with the term, it basically means that we should refer to the person/individual first, and their disability later.  Example: "Child/Student with Autism" not "Autistic child".

Zachary Lassiter over at Disability and Me blogged about this back in July, and he shares my view that this is just a huge WASTE OF TIME.  While I appreciate the gesture to ensure the individual is seen before the disability, simply rearranging someone's words has no bearing on their actual beliefs.  Besides, I have better things to worry about than get in a huffy because someone referred to Bugsy as an "autistic child" instead of "a child with autism"

I'll switch between both.  I really have no qualms against either.  What I do have a problem with is the fact that people are wasting time discussing which one to use.  Just because someone says "child with autism" does not mean they automatically respect my child more.  Case in point: our school district says that Bugsy is a "child with special needs" day in and day out, but they consistently fail to meet her needs and provide access (but that's a story for another time).

For me, it's a case of saying to-may-to or to-ma-to.  What about you?

I'm puzzled...

I understand the need for every cause to have a symbol, but I've always been puzzled (no pun intended) by the puzzle piece symbol for autism.  I am a huge advocate for the awareness that no two children with autism are the same (or no children are the same, period!), but when you put two children with autism together, you won't automatically see the whole reach of autism.  In fact, you could put 50 million children with autism together, and all you will have is a  huge headache but no certainly clearer understanding of the next child to come along with autism. 

For me, autism is not a puzzle.  My child is a puzzle.  Sure, there are some characteristics to autism, but I have never met anyone who said "my child does 100% of the things your child does!".  Just when I think I've got her figured out, Bugsy will do something completely out of left-field and leave us all standing around like clueless fools.  But then again, it's this puzzling for every parent out there, whether their child is typically developing or not.

I guess the moral of this story is I would appreciate it if people in general were not so quick to trip over themselves looking for a "cure".  I'm still not convinced this is a disease.  While I do wish things were sometimes easier for our little Bugsy, I don't look at her and wait for a cure.  This is just the way things are, and the way that she is.  Just like some people have blonde hair, blue eyes, or can curl their tongue, my Bugsy happens to have a bunch of weird quirks that someone somewhere decided to label with a word: "autism". 

Every child is special and unique - my Bugsy just happens to be a little bit more so.  The only puzzle piece she is - is a puzzle piece to the mosaic of my heart.  The only bigger picture she is a part of is our family picture. 

5-hour school bus ride

I was so shocked by this story out of Compton, California: Families of Special Needs Kids Want Answers About Five-Hour Ride by Lost Bus Driver. A bus carrying 14 students with special needs was LOST for five hours on the second day of school.  And no, the kids were not driving themselves. 

How does one get "lost" for 5 hours? Without so much as running out of gas? Or asking for directions? It's not like Compton is way out in the boonies where each house is separated by a 30 minute drive. I'd be seriously worried about something ELSE (of the illegal kind) going on.  Regardless of whether kids are involved or not, any regular sane person lost for more than 30 minutes would stop and ask for directions!  I understand that mistakes happen.  However, mistakes account for the school bus being 10 minutes late, not 300 minutes late. 

Forget 5 hours. If my child was late for 30 minutes I'd be on the phone with the police, FBI, CIA, Secret Service, National Guard, and anybody and everybody that would listen.  I'd be driving around town looking for school buses.  This bus driver essentially KIDNAPPED these children for 5 hours. I hope the police has at least spoken to this individual. An adult goes missing with a bunch of children for 5 hours...it doesn't take an overly imaginative or paranoid person to think of the possibilities.

What's worse is the superintendent's reaction. "They were on the bus. They were safe. We were tracking the bus. We were looking for where the bus was." How does the superintendent know the kids were safe (or even on the bus) if they didn't know WHERE the bus was? And if they were tracking the bus, why didn't they know immediately where it was?? 

Our only experience with school transportation was only for a month with Bugsy's first school district before we moved.  We loved the driver; she was so sweet and caring.  I'm definitely not encouraging paranoia or a boycotting of school transportation services, and frankly I'm more concerned with the Compton district's handling and reaction to this incident. 

What are your thoughts?