Autism Awareness Hawaii

line-em-up
Originally uploaded by Sara J. Smalley

one of the repetitive behaviors my son has is lining up of objects. whatever the objects may be. he used to only line them up all in a straight row but now he puts items on top of one another, in a semi circle, or other patterns. it is really interesting to watch.

if i could peel away the layers
Originally uploaded by Sara J. Smalley

if i could peel away the layers
i could see what is inside
i could feel what you feel
then we would no longer hide

if you could peel away the layers
i imagine you'd have so much to say
like how are you this morning
and i love rainy days


i wrote this with my son in mind. he inspires me to explore and express what is inside.

his first B-12 shot was yesterday. With it he takes Folic Acid to help keep him form being hyper.

His reaction an hour after was running and spinning in circles for a few minutes. I also know the injection stung a bit. We are looking into nasal spray.

Today was great. He is more responsive. He was not as loud as usual while we were out eating. I see a bit of an improvement from one shot. I can't wait to see what happens as we progress.

I asked him to look at me and usually he won't for long but today. He did for about a second longer than usual. You have no idea how that one second longer means the world to me.

Parts-of-an-angel
Originally uploaded by Sara J. Smalley

inspired. my son always inspires me. he has autism. although he doesn't communicate the way you or i do, what he has to say is beautiful. he loves music, he can read since he was 14 months old and is 4 now. he reads at about a 3rd grade level now. he learns at an unbelievable rate. his memory is amazing. i often get frustrated because of our communication barrier but he has taught me patience. because of him i am a better person.

i find that i do not pre- judge people like i used to. sad, i know. when i hear a child crying or screaming at a store i never judge the parents. i have had my fair share of meltdowns. people are quick to judge my parenting when my son is over stimulated from his surroundings and the only way he knows how to release is sometimes by yelling. i also wear my son in an ergo on my back. i get mixed reviews from the public but i could really careless. it keeps him not only safe but comfortable. he has horrible sensory issues and when in a crowded place needs a lot of sensory help. carrying him on my back really helps to relieve that stress for the both of us.

anyway i could write a book on our experiences but i will save that for later.

someone on my contact list on myspace posted this. I found it amusing since it is so true!!



----------------- Bulletin Message -----------------
From: ASD Parent Advocate
Date: Jun 2, 2008 6:53 AM


How many IEP meetings does it take to change a lightbulb?
Thanks to Amy for posting this!

Body: If team members were asked "How many IEP meetings does it take to change a
light bulb," this is what I imagine they might say:

Parent - "The light bulb is not the only thing that's burnt out.



"

General Education Teacher - "No one said I was going to have to teach
changing light bulbs.



"

Case Manager - "If you hadn't wanted so many hours of service in that room,
maybe the light bulb wouldn't have burned out.



"

Transition Coordinator - "I think they cover that in life skills.



"

Special Education Teacher - "We don't need a light bulb, it's not like
they're reading or writing.



"

Special Education Director - "We'll have to just keep changing his placement
until we find a room that has a light bulb.



"

Resource Teacher - "The side benefit is that we'll have to bring them up
from the basement.



"

Teaching Assistant - "We don't really need a new light bulb, there's enough
light coming off the television.



"

School District Attorney - "The regulations don't require light in the
timeout room.



"

Dean of Discipline- "Is there supposed to be a light in the time-out room?"

Assistive Technology Team - "First, we have to determine that the light
bulb's really burnt out and then we can trial a flashlight.



"

School Nurse - "I don't know how many it will take to change the light bulb,
but all the special ed children will have to go home until we do.



"

Secretary at the meeting - "O.K.



then, how many minutes of light are we
allotting in the IEP?"

Special Education Director - "We are willing to provide nightlights and
maybe open the door a crack; we feel this is more than educationally
appropriate and all Rowley requires.



"

Teacher - (Sobbing) "What do you people expect from us anyway!"

Parent - "I don't understand why you're being so difficult, it's not like
we're asking for a chandelier.



"

School Psychologist - "The children are just lazy.



If they really wanted to
learn they'd study by candle light like Abraham Lincoln.



"

Janitorial Custodian - "I'd like to help you, but I'm not a part of the IEP
team.



"

Dean of Discipline - Dean of Discipline - "I'm just here to make sure we
write it as 'change the light bulb.



' The minute anyone uses the word,
'screw' this meeting is over.



"

Special Education Attorney - "The light bulb is the least important thing
that needs to be changed in that classroom.



"

http://specialedlaw.
blogs. com/home/2008/05/how-many-iep-te.

html#more

in his world
Originally uploaded by Sara J. Smalley

this is a view into his world. from my perspective. I see him do this with his toys very often. It is one of his "stims" . I always wonder if there is a specific pattern to it or if it is just random placement of the animals.

another view
Originally uploaded by Sara J. Smalley

here is a closer perspective!! he has to have a certain amount of space in between each animal.

Ahhhhhhhh!!!!
Originally uploaded by Sara J. Smalley

3 yrs old and living with Autism. He has his moments of outbursts. Here he is yelling at his reflection in the TV.

So I figured no better way to start then to set a date. The first meeting will be set for May 21st, the third Wednesday of May. From 7pm-9pm. If this date does not work for everyone please feel free to email me or comment here. I will give more information regarding the meeting in a few days. Also please email me and let me know if you will be making it so that I can provide enough seating.

Sara Smalley

My Contact Info...
autismawareness808@gmail.com

Thank you to everyone who bought my hand made products and prints to help raise money for Autism Awareness Month!! It was so nice to meet you all and talk to those who shared their own stories. It was fun and I would love to do it again.

This Saturday at Mapunapuna Ben Franklin, I will be selling handmade items and photograph prints to help raise money for families of children with autism. Please come visit and support the cause.

Treatments and therapies of Children with Autism can cost families $100,000 and more a year. Medical insurance in the state of Hawaii does not cover many of the treatments and therapies needed. Most parents also find them selves fighting the education system to get their children proper serves and end up at due process court.
Any money raised is a step closer in helping the families help their children. I hope that many of you will come join me in helping these families!!

Also www.snowpeadesigns.com is donating 10% of all proceeds to help as well.

Aloha,
Sara

I am starting a support group in the Honolulu area. Either at my home or near by facilities. If anyone wants to join us please email me.

Thanks!

So there is a song called "Accidents Happen" from Elmo's Potty Time. One morning last week, Hekili stepped on our little Asian floor table. The leg broke and he came to me and was upset. I told him it was ok that accident's happen. He then responded "and it's ok. It's not a crime". He used the lines from the song to let me know that he understood the situation and that I was not upset with him. Gotta love it!!

amazing
Originally uploaded by Sara J. Smalley

Journaling reads ...

Most people do not realize how amazing it is to see this. A simple holding of hands. I asked you to take photos with your sister you said “no”. As soon as she leaned over and looked at you, you took her hand. This along with what you did in the car this morning was amazing. You asked for a napkin I thought it was for you. I gave you a tissue and watched as you tried to wipe Nohi’s runny nose. I feel like little by little you are coming through . You amaze me. I love you Hekili.

Ana on ABA II
Originally uploaded by Sara J. Smalley

Ana is giving the training for our skills trainers. It was very informative and really well presented. She gave great examples and really helped us to see the visual picture presented.

The Students!! The Skills Trainers
Originally uploaded by Sara J. Smalley

some of the st's at our monthly ABA/VB training.

I have always worked with Hekili and now I am getting the technical training. The same training that all the other skills trainers are getting. It feels so good to understand all the technical jargon. I feel so accomplished.

not what you think
Originally uploaded by Sara J. Smalley

most people will look at this photo and see a happy little boy interacting with his mom. That is right to some extent. Actually Hekili is not laughing because of me. He is saying the parts of the shows he likes to watch over and over again. Going over parts that amuse him. I just so happen to be outside with my camera when he was going over a funny part.

He stims (self stimulus) all day long with words. He likes to talk, hum, sing, or doing anything orally. There is so much more than what everyone sees. Maybe one day soon he will be able to tell me all about how it feels to do his verbal stims.

I will be posting some more information about ABA. Many parents ask what ABA is so I want to compile information for you all. Also you need to check out this blog in a week or two. Ana will be posting information and videos of her ABA sessions.

Here is the link.
http://allaboutaba/vb.blogspot.com/

Thanks,
Sara

he was marking his shirt and body with the chalk to see if it would show up. You can see how much he was into it.

hear me now

i try to express my self daily
it does not come as easily
for you it is a simple yes or no or maybe
for me it is complicated and frustrating

i need to learn to speak like you
i need to learn to tell you who
i am inside
hear me now
can you hear me

my voice is one of my own
a language that is to you unknown
i feel and see in a different light
i know a world out of your sight

you need to learn to listen
to hear my sounds and then
you can get a glimpse
of what is my world
hear me now
listen

Hekili has gone through tons of transitions with skills trainers. These are his new skills trainers and they are Wonderful. The one holding his hand is Anna and the one behind is Colleen.

He is dealing with transitions better than I thought he would. He was sick this day but managed to work pretty darned good.

Anna is doing fishy kiss and Hekili saw me with the Camera so he looked my way.

The light this morning was beautiful form the window. He didn't want to stand for a photo so he grabbed his lion chair and sat. I worked with it. :) He is just so precious!!

Hekili gets up and goes straight to his animal collection. He pretends play with them all the time. That is a huge step for someone with autism.

trying to get back into the photo journal I am doing of Hekili. This is his thing now. He likes to make piles of his things. especially his animals. He uses his hands and feet to scoot them from one location to another.

ok receptive language is often taken for granted. For example ...

3 months ago..
Me: Hekili what would you like to eat for breakfast? Rice with soup or french toast?

Hekili: rice or french toast.

Now with lots of ABA and him learning more.

Me: would you like rice today or french toast?

Hekili: I want rice.

It is amazing when he answers because I know he understands what I asked. Every day is another step. Although he is academically gifted his use of language is behind. I am so proud when he tells me turn it off or put it on. His newest is "I'll hold it".

Take time appreciate every little word or phrase for it is a huge step!!