Carly’s Voice (48 page)

Q: SgtMgt @CarlysVoice
When you are w/your family in public and someone seems curious, how do you prefer
your family to address your situation?
A:
To tell you truth I never really have had a talk with my family about that. If I
am with my mom she will either tell them what is going on or tell my dad what
morons they are. My dad just looks away from them and tries to move us on if he can.
I think the real way to handle it is just to go up to them and tell them I am Autistic
and answer any questions they might have. But sometimes I cant do that because I am
to worked up.

Q: Bonnie1018 @CarlysVoice
you mentioned you would miss a few things about being autistic . . . what would you
miss? #Autism
A:
I would miss spelling to some one 4 the first time & seeing there face. Setting a
goal that every on thinks is to high and braking it.

Q: Momtweets @CarlysVoice
What thing about being autistic do you like? What’s the worst thing about being autistic?
A:
I like when I shock people because they think just because I’m autistic I am not
smart. The worst thing is not being able to control my self even though I know what
I am doing is wrong.

Q: caringchild @CarlysVoice
Whats it like being a silent observer of things going on around U? When you found
your voice did it open the world to U?
A:
Being able 2 hear things that people don’t know I hear or I’m in the room but don’t
think I hear them is cool some times. But some time you don’t want to hear things
that you do. Spelling has helped open some of the world to me.

A person who cannot speak may still have plenty to say.

Q: manly7678 @CarlysVoice
My 5yo daughter has #Autism & is non-verbal, but she has a definite spark in her eye.
Your story fills us with hope.
A:
I go to school every day with kids that are Autistic And some of them are non verbal
but I have no doubt in my mind that they all have inner voices and they just need
to find away to get there inner voice herd. So if you have a feeling your daughter
has a inner voice don’t give up till she is heard.

Q: bearclaw @CarlysVoice
At what age did u feel you had a breakthrough, even if u couldn’t voice it yet? #Autism
A:
I think when I was around nine I really was able to audio filter what my sister had
to say and I wouldn’t believe it.

Q: chag61 @CarlysVoice
Please explain how you can organize your thoughts and type but you cannot speak .
. is this a possibility for all who are autistic.
A:
We all have the ability to spell. Work on simple words and make sure we are always
around words. We are looking at things all the time.

Q: aaronr @CarlysVoice
How did u learn 2 communicate so well on your PC & can low functioning kids w/#autism
be taught likewise? Thx!
A:
We all have a inner voice that needs to come out and we just need some one to believe
in us and push us to get it out.

Q: Devina @CarlysVoice
My brother has autism and he doesnt communicate with us in ways we understand. Any
ideas/tips on what we can do? Thanks!
A:
When I was younger I started talking with pictures. It was a great starting point
on learning 2 spell bcs the pictures had labels on them.

Q: anne @CarlysVoice
yes I have a question Carly. Do you think facilitated communication can be taught
to anyone?
A:
I don’t use facilitated communication so I really don’t know. I spell on my own with
out any holding my hand or whispering in my ear.

The five senses are anything but independent of one another, especially for many living
with autism.

Q: Tammy @CarlysVoice
Carly, I almost don’t want to bother you because you seem like you will be busy for
days answering all the questions we people have for you, but I hope you don’t mind
me asking you anyway. You can take days to
answer if you want. Take your time, no rush. Here is my question. My 14 year old
is always using her hands like a puppet and talking to them. Besides humming, hand
flapping, etc . . . what kind of environment or activities calm you the best? She
reinacts a lot of the movies she sees with her hands speaking to them as if they were
people. She holds her hands up in front of her face, almost like she were talking
to someone. She does it all the time. I’m not sure what it’s about. Is this stimming?
Is their a way to stop it? Should I stop it?
A:
It sounds like your daughter is audio filtering. This is actually a good thing and
don’t let any therapist or doctors tell you it isn’t. As she gets better at it her
hands will stop moving and she will be able to understand your words and things around
her better. Tell her I say keep it up girl friend.

Q: PatZ1 @CarlysVoice
Besides humming, hand flapping, etc . . . what kind of environment or activities calm
you the best?
A:
Flapping and humming and rocking does not calm me down it helps me cope with stuff
around me. #Autism

Q: DCxQueen @CarlysVoice
My cousin has autism, she doesn’t like clothes at all, have you had trouble with that?
Is there anything what could help?
A:
I use to hate the feeling of clothing rubbing and tuching my body. Especially if
they got wet. Get rid of tags. I like wearing shirts a lot better since I started
wearing a bra. Feeling is still hard to put up with but i am getting use to it.

Q: Myseth @CarlysVoice
Are you aware of dangerous situations like crossing the street and what you would
need to do if a car was coming.
A:
Yes, but that is really hard. 2 many sounds to take in & sights & smells & it gets
over whelming thats why we have a hard time waiting.

Q: toni @CarlysVoice
my little boy only eats toast. He will smell the food and not try it at all. He is
nearly 4. I will try forever but why?
A:
Lots of food can be over powering. See if you can find a dip he likes. Add it to
different food even if its grouse to you.

Q: Tileguy12 @CarlysVoice
Do you hum or spin? If so do you know what makes you do that? My son does it all day.
Thanks.
A:
Its a way 2 shut down all my other senses & just focus on one. Huming normaly is
followed by covering your ear to change sounds. Its masking.

Q: Cjboy09 @CarlysVoice
what kind of music do you listen to? calming jazzy type? pop? Etc.
A:
I like lots of different music but it also depends on how I am feeling. I like stuff
that has a beet or base when I need to stim. I find music at night that has calming
voices helps me sleep and stay a sleep.

Q: DailyDose @CarlysVoice
My 5yr old often stares off to the side not turning his head just using his eyes wide
eyed and almost straining. Why?
A:
When I was young I couldnt stare directly at things. I was looked out the corner
of my eyes and even though U think hes not looking he is.

Q: DailyDose @CarlysVoice
What do you mean when you say “i take over a thousand pictures of a persons face when
i look at them”?
A:
It’s the way I describe how we see. All the images come at us at once. It is so overwhelming.

Q: pressdough7 @CarlysVoice
When stimming, what is going on? Is it relaxing, a need, defense mech., centering
(proprioceptive) . . ? I’ll be watching in Aug.
A:
Drs. have the definition of stimming wrong. Stims are when you make or create output
to block sensory input or over load.

Q: jhannah5 @CarlysVoice
Am i the only person with a child who dips pizza in hummus? Danny’s autistic so i
guess that makes it OK, LOL!
A:
Its funny you should say that. A lot of times when autistic children and adults eat
food, we have a hard time with textures and smells. It can be a little over barring
some times. We block these things out buy adding dips to mask the problem. I like
dipping my pizza in mustard and at camp I dip my food in ranch dressing.

Q: Momtweets @CarlysVoice
You talk about audio filtering, how did you learn to audio filter?
A:
I am glad you asked that question. I learned how to audio filter on my own. However
I did pick up different techniques from therapists, even though they did not know
they were teaching me. I have been getting better at audio filtering in the last 2
to 3 years. It has helped me be able to understand better and communicate with others.

Q: Lena @CarlysVoice
Carly, when you were younger- did you like to watch the same cartoons over and over
again? Our son does this. Thanks.
A:
No, I had a hard time audio filtering t.v for the longest time. But I know why your
child does it. Its easier to process sounds that we here over and over again when
we are audio filtering.

Q: Lena @CarlysVoice
do sounds seem amplified to you. My daughter’s weakness is loud noises, fire alarm,
especially thunder.
A:
I take in lots of sounds and some times sounds that are loud for you are even louder
for me. I also Find sounds like the dish washer set my ears ringing.

Q: tifffkne @CarlysVoice
my daughter is 3 & she’s non verbal. She cries alot cause certain sounds bother her.
I don’t know why.. Do u maybe know why?
A:
I my self hear a hundred sounds a minute. Lots of noises that other people tell me
that they can not hear. We take in many sounds all at once. For some of us certain
sounds are much louder then others.

Q: tifffkne @CarlysVoice
Was it hard to learn meditation? My daughter also has extreme anxiety and sensory
challenges. I feel so helpless!
A:
My OT and my Therapist Howie introduced me 2 meditation and I was shocked at how
fast I was able 2 learn it and how affective it works. I recommend meditation 2 any
one who has high anxieties.

Having autism does not preclude a desire for friendship, love, and affection.

Q: Shannon @CarlysVoice
do you have a lot of best friends?
A:
I have a couple best friends and before some one twitters me yes one some are autistic.
But not all.

Q: Shannon @CarlysVoice
How old were you when you understood love & felt how very much your parents love you.
I’ve heard it can be a hard concept.
A:
I don’t know how old I was but from a young age I always new my mom and dad loved
and cared for me. I wasn’t able to tell them I loved them back or sometimes even hug
them back but I still loved them.

Q: caringchildren @CarlysVoice
Who do you like hanging out with more? “typical children” or “Autistic children” Why?
A:
I like hanging out with typical children because it pushes me to control my behaviors
and find different stims that look more suitable. But it is not easy. I get judged
for sounds and noises I make. However this summer I did walk away with lots of friends
and emails. I do hang out with autistic children as well and like that too. I have
many friends in L.A who spell like me. Its fun to hang out with them because I don’t
have to explain anything to them, they just get it.

Don’t think of those with autism as victims or view them with pity.

Q: klou4 @CarlysVoice
what kind of job do you want when you grow up?
A:
I would like to work for Borack obama in four years as a I think its called ambassador
for autism and get #Autism out in the open.

Q: oprahclub @CarlysVoice
If you went on oprah what would you talk about???

A:
I would tell people ignorance is caused by lack of #knowledge so lets #educate our
selfs. #Autism needs to be talked about.

Q: pamsfan1 @CarlysVoice
So many people don’t understand autism. We have been advocating for our son since
he was diagnosed.
A:
A lot of times its not that they don’t under stand its that know one has educated
them. The only time an autistic person is on the news is when something bad happens.
Or one day a year to raise awareness for autism. But autism day should be every day.
People like larry king oprah and news stations around the world should publicize it
every day. That’s the only way we will get people to learn.

Q: zen @CarlysVoice
Hi Carly! what can we do to help you promote your cause! Wonderful amazing blog You
are an inspiration!
A:
I just want to explain the truths and secrets of autism. So you can help me by asking
questions and getting others to do the same.

Some helpful tips

Q:
I am a massage therapist, planning to work with children with autism, any ideas on
how to provide a space where the child will feel comfortable?
A:
I have had a massages and enjoyed them as for a space make sure the oils or cream
you use is ok with the child and the smell of them isn’t over whelming. We can still
smell certain sense after you have used them on other people in the room. Make sure
fans and even air-conditioners are off. Some times sounds overwhelm us when we are
experiencing increase of sensory input like a massage.

Q:
How do you feel about your therapists/aides? What can I as a therapy aide do to make
a kid’s time with me a positive experience?
A:
I like therapists in fact I am friends with a lot of mine. The best thing u can do
is go with your gut not the book. If you think something will work try it. And always
believe in your child. They will feed off of that.