Carly’s Voice

by Arthur Fleischmann

  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.

  Q: Jeff @CarlysVoice How do you feel about gluten-free, dairy-free, casein-free and wheat-free diets? what do you eat?

  A: I tried it when I was younger. It never made me feel different. If it works 4 some people that is great. but I haven’t spoken to many that actually say its helps and not alot of kids are still on it that i no of that are my age.

  Q: Jeff @CarlysVoice What would you tell siblings of a Autistic kid on how to better deal with Autism?

  A: That we don’t mean to steal the attention form them and we are sorry when we brake things and we do care for them.

  Q: AnthonyH @CarlysVoice Would you recommend (or discourage) any devices/apps ideal for kids with autism. Eg iPod Touch or Nintendo DS?

  A: I like using proloquo2go on my ipod it helps me communicate when I don’t have a computer around and look like all the other kids with it.

  Q: ferrista @CarlysVoice I am a teacher for kids like you. If you were my student what one thing would you like me to know?

  A: That we are all teachable you just need to think out side of the box. Never give up.

  Q: jubilee @CarlysVoice if you didn’t live at home what technology would you want in your apartment?

  A: I would need my Ipod my laptop and a free chip vending machine. I would really like a t.v that I could hook my laptop into so people dont look over my shoulder to see what I am saying/spelling. I like to listen to t.v with wireless headphones sometimes. They help me block out the other overwhelming sounds and can helps me focus.

  Q: Healher @CarlysVoice When you can’t control yourself even when you know it’s wrong, what is the best support a person can give you when this happens?

  A: I know people want me 2 say they can help control some of our behaviors but alot of times. Some of our behaviors are to stop other behaviors. I was hitting my hands and the doctors thought it was self aggressive behavior. In fact I was hitting my hands to stop another behavior. I could not walk by paper or bags with out feeling the need 2 rip or shred them. So I would hit my hands to stop it. Sometimes when people interject they end up making things worse. But sometimes it can be great help.

  Q: GreenDilly @CarlysVoice my younger brother has autism, he sometimes gets very frustrated and hits himself, what is the best way to calm him down?

  A: First of all we hit ourself for many reasons. I hit my self 2 stop me from doing what I no is wrong. So if that is the case don’t stop it. Best way to help is to read us when we our getting frustrated and try to calm us down be for we get to that point.

  A Look Forward

  Carly’s input to her Grade 10 Individualized Education Plan, Fall 2011

  Area

  From Student’s Perspective

  Main Learning Goals

  What are the most important things you want to learn this year?

  I would like to learn how to improve my writing styles. I also want to learn how to get the knowledge that is
in my head out on paper faster so I am not behind on my work. I find I finish an assignment a few minutes after it is handed out but getting it from my head to the computer takes a lot of time and effort.

  Areas Of Strength

  What do you do well?

  I have a photographic memory that allows me to look at a image or a page of a book and memorize it in seconds. I have an exceptional command of the English language and therefore I am able to write elaborate papers or assignments that make teachers and other students think.

  Areas Of Need

  In what areas do you have difficulty or show limitations?

  I am slow with typing because of my autism so it is hard to answer questions right away in class and even participate in class discussions. Math is very difficult for me to do not because I don’t understand it but because it takes hours for me to write out the answers. I have difficulties in anything that involves fine motor or gross motor control.

  Disability/Medical Conditions

  Can you provide us with any resources or additional information about yourself like disability/medical condition?

  I have Autism, Apraxia, O.C.D. and good lookingness syndrome. My autism is not really an issue however I do stim, flap my hands, cover my ears, make deep sounds and twiddle paper and leaves. My apraxia prevents me from getting the message from my brain to the muscles of my mouth and therefore stops me from speaking and being heard right away. I am still able to think the same way a typical teenager thinks but I am not able to show you in the same amount of time. My O.C.D. is just like every case you might have heard of. Like Donald Trump or Howie Mandel, I have impulses to do things in certain ways. I need to wash my hands with soap on the back and then the front two times or else I feel like I’m being stabbed in my side.

  Special Equipment

  Is there any special equipment that you will use at school, e.g. walker, stander?

  I use an iPad to communicate with an app called Proloquo2go. I also use a program called Kurzweil to take notes on my computer. I use a program called iPrompt to help with my O.C.D. and I also use a computer program called “read please” to read my assignments to my class.

  Engagement

  How do you learn best?

  I am a visual and auditory learner who likes it when teachers write notes on the board or give handouts to the class. I find that when teachers lecture the class, I learn a lot. However, it’s hard for me when other kids are talking or making noise while the teacher is talking.

  Avoidance

  What frustrates, distracts, or disengages you?

  I have a hard time learning when the teacher wants me to answer questions right away in class. I have a hard time completing in-class assignments that are due during class time. I have a hard time doing art or artistic projects such as drawing a diagram or making a picture to do with the subject.

  Independence

  In what areas would you like to see yourself demonstrate more independence?

  I would like to see myself demonstrate more independence in the classroom by sitting by myself and less with my aid. I would like to be more independent on pushing myself to complete the work on time.

  Safety/Vulnerability

  Are there any issues unique to you that we should be aware of?

  I have Autism/O.C.D. and that brings up a lot of safety issues. I have a hard time controlling my impulses and I have a hard time controlling my body. I do have trained workers that know how to deal with these issues and they have been successful in the past.

  Response To Inappropriate Behaviour

  What are the best strategies to use when you have inappropriate behaviours?

  The best response is to tell me what I am doing, e.g. if I am making noise because sometimes I don’t even know I am doing it. If it’s something serious that has to do with my autism or my O.C.D., the best thing to do is let my aids deal with me and assist them if they ask you too.

  Social Interaction

  How do you relate to other students in one-to-one, small group, and large group situations?

  I have made lots of friends last year and I am trying to make more this year. I have completed two small group projects this year and felt I do well getting my voice heard and listening to others.

  Literacy

  Listening, Speaking, Reading, Writing What do you do well? What do you have difficulty with?

  I do well at Listening, Reading and Writing.

  I do have problems with speaking. I might not talk out of my mouth however I do speak on my computer or iPad. It’s really slow and I find it hard to talk to teachers because they tend to cut me off before I finish my thought.

  Numeracy

  Concepts, Computation, Problem Solving What do you do well? What do you have difficulty with?

  I do well at Concepts, Computation, Problem Solving but have a hard time showing or explaining it due to time limitations. It is hard to write equations due to limitations with software or programs on the iPad/computer.

  Transition Plan

  14 years of age and older

  What actions need to be considered now in planning for your life upon leaving secondary school?

  My goal is to go to UCLA and get my BA or Doctorate like my idol, Temple Grandin. I am also thinking of applying to Caltech to learn about computer programming. My goal is to visit the universities in March and meet the Deans and Professors.

  Key Information

  Is there any additional information that you would like to share that you feel it is important we know?

  That I am eager to learn and that even if I am not looking at you, I am still listening and paying attention.

  Acknowledgments

  When referring to raising Carly, we have often evoked the African proverb that it takes a village to raise a child. Though in our version, we elevate the village to an army. Without the following people in our lives, my family and I would still live under a cloud of darkness.

  We would not have gotten to really know our daughter Carly if not for Barb Nash-Fenton and Howard Dalal. This magical duo saw Carly’s potential—even before she did—and never gave up guiding her forward. They have done more for our family than we could have ever asked or ever done for ourselves.

  While there are numerous medical professionals to whom we are indebted, the commitment and wisdom of Dr. Wendy Roberts, Carly’s “Cool Doctor,” has been a beacon for us. We also feel enormous gratitude to Dr. Morton Goldbach, Dr. Diane Superina, and Dr. Rose Geist for helping us through the most chaotic years and working tirelessly to improve the quality of Carly’s life. The team of doctors, specialists, and nurses at the Hospital for Sick Children in Toronto are too many to mention by name, too important to ever forget. The patience and counsel of Dr. Sharon Marcovitch helped guide us in planning Carly’s education and understanding the intellectual milestones Carly has achieved.

  Years of excellent, scientifically backed therapy are at the root of helping Carly thrive. From the outstanding programming and dedication of the team at the Behaviour Institute led by Dr. Nicole Walton-Allen, Donna Chenney, and Kendra Gayadeen and Audrey Meisner at New Haven Learning Center, to the ABA teams that preceded them led by Elizabeth Benedetto-Nasho and Shayna Guenther, these people have taught Carly every skill she possesses. Autism affects the ability to learn, but not necessarily a person’s innate intelligence, and through the creativity, focus, and discipline of these wonderful ABA providers and therapists, Carly has shown us that her disability needn’t be her prison.

  While many therapists and support workers joined us for a period of time before moving on to other callings, some are a part of our life years later: Joanne Alexander, Dina Kalales, Melissa Perri, Colin Campbell, and, more recently, Katie Czich and Sheila Duggin (whose first “teaching position” was to work with Carly at school and which required her to do things never taught in teachers’ college). Carly’s team in recent years has expanded to include Barb Muskat, who provides Carly with a confidante and counselor. Ashleigh Eccles,
Carly’s occupational therapist, has helped Carly reach personal goals that many of us take for granted and, on occasion, achieve an inner calm many of us would love to find. Running our crazy household would have been impossible without the dedicated support of Shiela, our nanny of seven years.

  Thank you to Paul McCormack, Steve Noonan, and Brenda Scott for your never-ending support to our family. You have always had our back.

  We have been fortunate to have family in our lives—in particular, Tammy’s sister Carol; a better aunt does not exist. But friends have frequently been an extension of our family, and I don’t know where we would be without Mary Eberts, a legal champion for the cause of families living with autism, and a loyal friend. David Corbett and Jonathan Strug also stood by us in court when that was the only forum available to ensure our own voices were heard. Chip and Ruthie Bailey, whose door is always open to us, and who opened doors for us when we sought out Ellen to read Carly’s bat mitzvah speech. Similarly, those generous of time and patience who supported us and tried to understand the incomprehensible nature of our life include the Collies, Kibels, Seldons, Shepherds, Smiths, and Wellses, and friends from our youth who endured the test of time: Brian Saber, Randi Stern, and Karen Willsky.

  Sometimes, autism brings new friendships (despite being known as a condition that inhibits social ability) and in more recent years, we’ve been blessed with introductions to the Valners, Portia Iversen, and Jon Shestack, who, while we don’t see them often enough, we think of all the time. Carly’s story could never have been told without our friend Beverley Brock, who was tenacious in recommending Dana Dalal to us as a therapist when Carly was four; and to Dana for her commitment to Carly and, even more important, for bringing us her brother, Howard. Our list of friends would not be complete without acknowledging Holly and Rodney Peete and their kids, who generously awarded Carly a Youth Champion award and welcomed us into their home and their lives.