Carly’s Voice (38 page)

November 18, 2008

Hi Gaby

What yoga studio do you go to
I have been doing yoga for a month and a half and I am getting really
good at it
I can’t wait for our sleep over
I had a movie party with my sister Taryn and it was so much fun
We had lots of food and the cool thing was I got to spend time with my
sister
Don’t tell her but she treated me like a normal sister at it and I even
forgot I had autism
What kinds of foods should we have at the sleep over

I just got a really small computer that i can take any place and look
normal
Do I need to bring any thing to school
Do we go on any trips
I really can’t wait to see all of you

your computer savvy pen pal
Carly

November 28, 2008

Hi guys

I really want to celebrate my birthday with you three
I dont have that many real friends here and I thought it would be cool
to celebrate with all of you
I have never done that before
I normally have to celebrate with Taryns friends or family that rather
hang out with Taryn then me. I thought this year it was going to be
different. But its fine as long as my mom is ok.

Eric I have to tell you the fiz in my body went away. My cool doctor
put me on a new medication and I have not been feeling the fiz any more. It sill might
be there but I cant feel it. I don’t know when I am going to see you so can you get
skype on your computer so we can talk? Its so cool and I am really good at it.

Gaby I would love to meet your yoga teacher. I am getting taught by my O.T she is
good but I think I want a real teacher soon. when I eventually come to LA can we go
to a yoga studio? I also want to do yoga on a beach. We don’t get to do that here
all are beaches are covered with snow and its cold outside. Oh, ya Gaby i love pizza
and when i do come we for sure have to have it at our sleep over.

I am going to ask my dad to get the book you guys are reading. He and
I read a book together at night and it would be cool to read that one.
Maybe I can do some of the work you guys are doing here.
I’m hoping I get to see you soon

Your overly patient waiting friend,
Carly

December 25, 2008

Hi guys

I hope you are having a good Holiday. I am having a great time.
I went to see the movie Madagascar 2 with my brother. It was ok.
I went horseshoeing with Howard and his wife. Howard fell down and could not get up
it was so funny.

Eric i dont know when I am going to come to LA. now. i was hoping to guilt my mother
into just taking me for my birthday but she is really sick. I heard my mom talk to
Carol her sister in the kitchen and she told her that she is sick and she is going
to lie to my sister, brother and me. I was sitting watching tv and i heard the whole
thing. No one thinks i can hear them if they are whispering but i can hear every thing.
You know what i mean, Eric. I have been thinking about it a lot at night and i even
have been waking up because of it. I know she will be ok but I am still a little scared.

Gaby when do you leave Cogwheels? Can you give me your new email? Whats the other
school like that you go to? I have been using a weighted blanket and it’s been helping
me sleep at night. Ashley
my OT is getting me a bigger one and that should help me sleep even better. How big
and heavy is your blanket?

Neil the beaches here have snow all over them and some have ice.
I really want to do yoga on a beach but its cold out side. I did do something cool
today called snowshoeing. You put metal bars on your feet and walk on the snow. I
liked it and i went tobogganing down a tall hill. It was scary but lots of fun.

Your overly patient friend that was
wishing she was with you,
Carly

Q: BarryV @CarlysVoice:
sometimes when u set high goals and dont achieve them it hurts more than when u set
a small goals.

A:
That is true but if u don’t set high goals for your self you will never meet your
full potential. I would of never spelled.

The years on the hazy cusp of adulthood are hard for most teens. Being fourteen or
fifteen is an abstract phase of life, with neither the independence of adulthood nor
the carefree freedom of childhood. Carly was finding this limbo to be particularly
trying.

With Carly home from Cedarview, settled at the Learning Center, and a respite program
in place, Tammy and I thought the rest of 2008 would be a time to catch our breath.
Although we knew she might resist the full-time ABA school program, we knew Carly
was not prepared for the rigors of a mainstream school—even if we could find one that
would accept her with all of her exceptionalities.
“It doesn’t matter how smart you are if you can’t control your outbursts. The other
kids find it too distracting,” I explained.

While she would head off to school without too much resistance, once there, she refused
to type and made fairly lame efforts to comply with the program the team had put together.
Since Carly was unable or unwilling to use her computer spontaneously, the staff created
a curriculum with multiple-choice solutions. At least she could point to the correct
answers. We attributed some of her listlessness to the fact that she didn’t want to
be in the school in the first place.
“I want to go to school with Taryn,”
she would tell us.

“Taryn goes to Hebrew day school!” I tried to explain. “She takes Hebrew, French,
and a full curriculum. It’s not the right place for you.” I wondered where exactly
was
the right place for Carly.

“I think she’s bored at school,” reasoned Tammy. “Why don’t we ask them to give her
an academic assessment in a classroom setting so she can see what level she’s at,
and if she can handle a class environment.”

It seemed like an intelligent idea to all of us except Carly. At least we would know
what kind of curriculum she could handle at the Learning Center and perhaps she’d
be able to sit for a lengthy period after all? If so, maybe she
could
handle a public school at least on a part-time basis.

Despite the logic, Carly had a lengthy, circular conversation with me one afternoon
that spring that left me both annoyed and bored. I ducked in and out of my office
for meetings in between staving off Carly’s rebuttals of why she shouldn’t have to
take a placement test.

[2:20:52 PM] Carly says:
i dont want to go to school and take the assessment test tomorrow

[2:22:37 PM] Arthur says:
why not? It will help them come up with a better program for you.

[2:23:38 PM] Carly says:
i want to go to the public school nearby

[2:24:50 PM] Arthur says:
you are getting too old for that school. and they don’t have the right type of class
for you. Carly, PLEASE try tomorrow. Please try to work with the teacher and students.
we are trying to understand what you are capable of doing. so that we can find the
right type of school and class for you. do you understand?

[2:25:49 PM] Carly says:
that school is not for kids like me

[2:25:58 PM] Arthur says:
No? why not?

[2:27:35 PM] Carly says:
they have some thing wrong wi th them

[2:28:30 PM] Arthur says:
they need a special way of learning. but many of them are just as smart as you are.

[2:30:07 PM] Carly says:
no it makes me sad to see them. i don’t want to go. i am not going. Howard said they
have normal kids but tell them to come here i am not going. i am going to write Claire
and tell her i am not going.

[3:46:49 PM] Arthur says:
i know. you have been telling everyone that. but i think you are being very stubborn.
you want to be like other kids and learn. the only way to do that is for us to assess
how much you can do.

[3:51:57 PM] Arthur says:
are you still there?

[3:52:51 PM] Carly says:
i never get a choice in what I want to do. you said go to cedarview, i went. i don’t
want to go to that school.

[3:53:30 PM] Arthur says:
okay. i understand how frustrated you must feel. will you let me explain something?

[3:53:55 PM] Carly says:
no

[3:54:23 PM] Arthur says:
if you won’t have a conversation and listen to me, then i cannot help you. i need
to explain something!

[3:56:05 PM] Arthur says:
tomorrow’s session at the school is what’s called an assessment. it is Marion and
Claire’s way of seeing what the best way is for you to learn. then we can figure out
what school program will work for you.

[3:58:46 PM] Carly says:
ok they can do it here. i dont want togo to the school

[4:02:25 PM] Arthur says:
i understand that. but they cannot do the assessment in our house. we cannot ask 5
or 6 people to come over just because you don’t like to see other kids with autism.
and Carly, I think you are being selfish—you don’t want other people to avoid you
because you are autistic!

[4:05:29 PM] Carly says:
why not we have done it beforeeeee. i never ask for much and i am askinggg

[4:26:34 PM] Arthur says:
I know, you do not ask for much. you are not a greedy person. If you really refuse
to go take this assessment, we will not make you. But, if you do not do the assessment,
we cannot figure out what kind of schooling you are capable of. So where does that
leave us? That is why we are doing the assessment.

are you still there?

[4:34:23 PM] Carly joins conversation
[4:36:51 PM] Carly says:
i can t work in a sad place.

[4:37:44 PM] Arthur says:
you will be in a class room. i think if you have a good attitude, you will do fine.
and then we can discuss your options for education. but this is an important first
step

[4:43:06 PM] Carly says:
it’s just too sad for me to go I will cry

[4:45:10 PM] Arthur says:
why will you cry? you will be with a boy and a girl who are your age. They do not
have autism. you will work with them.

[4:49:07 PM] Carly says:
i will still hhhear them

[4:49:39 PM] Carly says:
iiiiiiits sad

I could see this would go on forever. “Maybe she should be a litigator,” I told Tammy
later. “She’d just wear the other side down till they were like, ‘Fine! I’ll pay anything,
just please let me out of here.’”

Seeing that she wasn’t getting anywhere with me, the next day Carly sat down at her
computer with Howard and Barb and drafted a letter we later termed
the rant
. It was directed at the program director of her school, but I think it was more of
a cathartic explosion of pent-up emotion. In her note, she continued to refuse assessment,
but also gave us a better understanding of why. Teens are often a mystery, but when
we could get Carly to open up, she gave us excellent perspective. Her note read in
part:

I do want to go to school but I cant

Its not that I cant do the same work as all the other kids

I went to school before and even did well on tests

But I could not stay in class because of all my behaviors

I was hard for me to sit in the class without banging or screaming or standing

I tried so hard to control it

But it is too hard to do when I need to spell and do other things at the same time

My dad said that is why we see the doctor in the hospital she is trying lots of medication
to see if she can help me

You say you to want to help me

But how can you when you don’t know what its like to be me

You don’t what it feels like when you can’t sit still because your legs feel like
they are on fire

Or it feels like a hundred ants are crawling up your arms

How can you help me when you don’t know?

My dad and mom say that every one takes tests to help let people know what level they
are at

But I have taken lots of test and I know what I can and cannot do

You want me to be in a room with three kids and concentrate on playing a game I probably
cant do in the first place and at the same time try to control my behaviors

You don’t have to be smart to know what is going to happen