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. 

Encourage pointing with beams 'o light!

Pointing is a very important skill.  It's a form of communication and joint attention.  When a child points to the passing firetruck, he is telling you "Look at that!".  He wants to share something with you.  He wants to make a social connection with you, and wants your attention so he can tell you about something.  Joint attention is essential for communication and social exchanges.

Inadvertently, pointing also triggers multiple learning opportunities.  When the child points to something, the response from the adult is something along the lines of "Oh?  What do you see?  It's a big red firetruck!  Where do you think the firetruck is going?  He's going fast, isn't he?".  Such a natural response is a wonderful learning opportunity, because we just labeled the thing he was interested in and pointed to ("firetruck"), and also presented characteristics ("big", "red", "fast").  We are having a conversation with the child, even if the child cannot verbally answer yet.

A lack of pointing is also one of those warning signs for autism.  Bugsy didn't point (at all) until she was 2 years old, and only after some pretty intensive therapy.  We did hand-over-hand a lot, modeling, and enlisted the help of toys with tiny buttons that could only be pressed with one finger.  Like an alphabet board toy where she had to isolate her index finger in order to press one button at a time.  Even after she started pointing, it was only under certain circumstances and only with prompting.  It wasn't until she was 3 years old that she was reliably and independently pointing to communicate her wants and needs. 

OTC 12 Finger Beams $8.00

The other day, a family friend gave Bugsy a toy that I wished I knew had existed 2 years ago.  It would have saved us a lot of sweat and tears.  They're finger light beams.  A little elastic allows you to put it on a finger (any finger), and then the light shines on whatever you're pointing to.  You can buy them online from Oriental Trading Company (12 for $8) or Amazon (40 for $7 with prime shipping: here or here).  


Now, granted, the toy will work and the light will still shine if the child isn't pointing but just making a fist or whatever.  But that's where the adult supervision, modeling, encouragement, and prompting comes in.  I particularly like the set that Bugsy got, because instead of just shooting a light, it actually makes pictures.  If she's not pointing at a blank wall, then the picture gets distorted and she can't see it, so it encourages her to target a specific location.  Also, if she's shaking her hand/arm/finger, the picture starts bouncing around - so it's motivation to hold her hand steady.  It's a good way to work on strengthening, because she can actually see that she's being unsteady.  Bugsy will say "uh-oh" if she drops her hand and loses her picture =).   

As you can tell from the picture, these things are pretty tiny.  Adult supervision is DEFINITELY needed because it's totally swallowable.  Besides the fact that swallowing anything non-food is not so great for you, these things are powered by 3 watch batteries...so that's something you definitely don't want to add to your diet.

The one thing I really don't like about this toy is that little elastic band.  Bugsy has come a long way with tolerating things on her, but when she first got this toy she was still a little bit hesitant.  I had to actually force it on her little finger, and she was about to make a fuss before I turned it on and she was too mesmerized by the pretty pictures to remember that she was mad at me.  Now when she knows we're playing with these she readily sticks her finger out for them.  However, I wouldn't be so confident 2 years ago the pretty pictures could have overpowered the tantrum.  This toy also requires a pretty dark room for it to work.  So if your kiddo has sensory sensitivities, this might be more trouble than it's worth for your family.

Has anyone else seen these things and had success with them in working on pointing?  I didn't know they existed until 2 weeks ago, and Bugsy has already mastered the pointing skill, so I'd be interested to know how it works for kids who are still working on pointing.