Check your local library...

Besides having a practically endless supply of books, your local library is a treasure trove of free resources.  Our local library here has 2 great resources that I wanted to share with you, in the hopes of encouraging you to check your local library for something similiar.

Zinio
Zinio is a magazine reader that is available on your iPhone/iPad, Android device, or computer.  Normally you would have to purchase a subscription for each title you want, but my library has over 100 titles available for FREE.  There's a sign-up process where I have to create an account using my library card, but once it's all done, I can read the magazine anytime from my iPhone or iPad.

And we're not talking about obscure magazine titles either.  There are great titles on there like Good Housekeeping, Parenting, National Geographic...etc.  There's even gossip magazines like Star that are one of my guilty pleasures in life - perfect for those days when it's just been rough and I need to veg out...

Tumblebooks
Our library also has a Tumblebooks library.  Tumblebooks is a great online resource that actually reads the books out loud.  Some of the images are animated, and each word is highlighted as it is being read.  It is a great way to work on literacy skills! 

What are some of the resources that your local library offers?

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? 

Visual Timers Options

Time Timer (www.timetimer.com)

Visual timers are a great way for children who have yet to master telling time grasp a concept of time.  Visual timers are exactly what they sound like - timers that are visual.  They give the user a visual reference to how much time is left, instead of relying on numbers.

We use visual to keep Bugsy on task.  She likes to take half a century eating, especially dinner.  And she loves to skip out on brushing her teeth.  We also use visual timers to give her transitional warnings.  Saying "5 minutes left" is pointless when the child has no idea what 5 minutes mean.  Saying "you have until the red is all gone" means something because she can tell the red is getting smaller and smaller.

When we were first introduced to the concept of visual timers, I was a bit daunted by the cost.  Time Timer makes a 12", 8" and 3" version, but the 8" one costs $35!  They do make mobile versions for your iDevices, but the iphone app costs $3.99 and the iPad app costs $6.99.  $3.99 is a far cry from $35, but in terms of apps, $3.99 rests on the more expensive side in my opinion.  However, there are other alternatives for visual timer apps for the technologically inclined.   Timer+ Touch from SixAxis was recently free this past Labor Day for the iPad, but normally is priced at $1.99 for both iPad and iPhone.  I personally downloaded the iPad app this past Monday at the very economical price of free =).

There are pros and cons to having a timer on your device.  If you already down an iDevice, the cost for the app is much lower than buying a stand-alone timer.  However, your device is essentially unusable during the entire timing period.  If you minimize the app, it's just as useless as telling the child "5 more minutes" when he has no idea how long 5 minutes actually is.

There is also a FREE online version at www.stop-watch.com (select "countdown").  However, it will not work on mobile device (or at the very least, the timer will work but the visual part of the timer is missing).  This may be an alternative for classrooms or homes where a desktop is conveniently placed but not in use during the child's activity.  Because again, if the timer is minimized, it becomes essentially pointless and useless to the child. 

Amazon.com: $14 with prime shipping

Other alternatives include a pie kitchen timer made by Joseph Joseph and sold by Amazon.com for $14 with free prime shipping.  I considered making the purchase, but was swayed by the multiple reviews that stated the timer stopped working a few months later.  I have not had personal experience with this timer, so I can't speak for it either way. 

Lakeshore Learning: Giant Sand Timers ($49.95)

And of course, there are the traditional sand timers.  This was my first thought when we were looking for a visual timer for bugsy.  However, I quickly learned the cons of using sand timers.  First (and most important for us), a sand timer is fixed.  If I purchase an hourglass that runs for a minute, and it will only ever run for a minute...meaning I can only ever it for activities spanning a minute.  You also need a larger hourglass to be able to really see the sand clearly.  Lakeshore sells a set of 4 giant sand timers for $50.  Also, sand timers don't have alarm.  It empties all of its sand, and if no one is watching it, nothing happens.  I use these timers for me as well, because I can give Bugsy a 5 minute warning to clean up and then not have to watch the clock the entire 5 minutes.  I can multitask can go do something else.  With a sand timer, I risk not being able to follow through.  Sand timers might be perfect in structured settings like classrooms or therapy sessions, but not so much for a situation where I might not be sitting in front of the timer!

Do you use a visual timer?  If so, what method works best for you?

Finding a balance to extremes

I've been looking for alternative preschools for Bugsy, and it's so hard to find a balance.  At one end we have the specialized schools, where they only serve atypical children and work with a functional curriculum.  At the other end, we have your typical preschools that the regular average preschooler would attend.  Finding a balance that would allow my Bugsy to benefit the most from her environment is proving to be a challenge. 

Bugsy's main needs are communication and social skills.  We got a speech-generating device over the summer for her, and she is beginning to learn it.  However, she still needs a lot of support to effectively communicate using her "talker". 

http://www.photo-dictionary.com

Currently, Bugsy is in a special day class with our local school district.  She is in a non-categorical class with about six other children.  The teacher is wonderful, and the two aides are great too.  However, her teacher and aides are not trained to support Bugsy's "talker", and the district has been less than enthusiastic with the many (free) training opportunities we have presented.  I know something about the device, but I'm no expert and I definitely can't train the school staff in 5 minute increments when I drop Bugsy off in the morning.  Furthermore, all of the children in the classroom have various social impediments.  No one is really playing together.  How is Bugsy supposed to work on her social skills with a bunch of other kids that don't have any?  It's like the blind leading the blind.

I have toured a couple of typical preschools, but they've been downright depressing.  24 children, 1 teacher, 1 aide.  "Controlled chaos" seems to be the running theme.  My Bugsy would absolutely drown in there.  All the schools mentioned a shadow aide, which we have no problems with...except I want the shadow aide to be an aide, not a teacher.  I've had more than one school tell me they don't have time to teach her, but they can provide the curriculum and facility for her aide to work with her.

Then on the other end, you have specialized schools that only serve children with disabilities.  The school I'm touring this morning has eight children per class, but also eight teachers.  They have lots of experience with speech-generating devices.  But they have no typical peer interaction time, and their classes are mixed age. 

So, I'm left with trying to find a balance to the two extremes.  In a typical preschool, Bugsy will be able to work on social skills, but her communication deficits would pretty much be neglected.  In a specialized school, they will be a great support for her communication, but will not be able to offer much in terms of social skills. 

I understand that you can't have everything in life, but weighing which of Bugsy's deficits to work on is so hard.  Like every parent, I want everything for my child.  But I think it might be time for us to consider that in trying to do everything (in her special day class), we are not doing very well at anything at all. 

Have you ever been in a situation where you had to concentrate on something at the expense of something else?  How did you make your decision?

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.