Anastasia garachtchenko

Sprouting Late

Written and designed by Anastasia Garachtchenko

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Acknowledgement

To all the people who look at the sky and see more than stars.

Table of contents Foreword . . . 7 Introduction . . . 9 Chapter One . . . 11 Chapter Two . . . 16 Chapter Three. . . 21 Conclusion. . . 27

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Foreword W

hen I first started writing this book, I knew it was going to be hard. Between writing about a very serious topic, and a topic that most people try to ignore, I wasn’t sure where to begin. My writing of this subject only seemed to solidify when we were acting out interviews in English. I had quite a bit of knowledge about my partner’s topic, indie gaming companies, but when it was my turn to ask the questions, each one brought the conversation to a standstill. He had absolutely no idea how to answer any of them, and while I give him credit for trying, I must thank him for making me realize how little is known about Special Education programs in the United States. This still doesn’t mean that each chapter I wrote was like walking through a class-three hurricane. Should I include include my personal anecdotes? Who even was my target audience?

And do I even have any right to write about such a sensitive topic? But after a month of scrambling to meet deadlines, giving up on some of them, this small thirty-page book is what I have produced.

-Anastasia Garachtchenko

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INtroduction T

he first few years of human life, are debatably the most important and exciting. Children develop personalities: quirks, likes, dislikes, prejudices, and moral beliefs. In an ideal world, every child would grow at the same rate, but common knowledge is that we don’t live in a utopia. When I was at the doctor’s office I would always see dozens of posters, flyers, and brochures telling me that if my child wasn’t pointing by 18 months I should talk to their pediatrician. I remember brushing it off because I was 12, and autism was an alien concept to me. I wasn’t disabled and I didn’t know anyone disabled, so these posters hardly bothered me. Mental disabilities were far away topics; miles could fill the gap of knowledge I possessed. However, in recent years there has been an alarming spike of autism, the number of reported cases has increased seventy- two percent since 2007 (Hoffman)and many families face the toughest question: “What now?”

When I first walked into the The Center for Speech, Language and Occupational Therapy(CSLOT) I was scared, the carpeted floors and glass door reminded me all too much of a doctor’s office, but then I hear the peals of children laughing and I relaxed. In the United States there are early intervention programs, like CSLOT, to help these children learn communication skills, but even for a parent who knows a program like this exists, finding out your child has a disability can be terrifying, which is why CSLOT also attempts to help parents learn how to accept the fact that their child is disabled. By raising awareness of the programs, we can answer the “what now” question and help erase the stigma that comes with these disabilities.

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Chapter 1:Communication I

nally start communicating via written text on my own, but on that first day when my mom supported my writing hand in hers, I began to acquire a new way of interact“You might think that speech ing with others.”(Higashida 6) is the only way to get your point and intentions across, Higashida brings to light to but there is another way to how autism often isolates say what you want with- people. Without communiout using the vocal nervous cation, children with ausystem. At first I never tism face many obstacles, dreamed I could make it including difficulties corwork, but now I am able rectly conveying their ideas. to express my true self using only a computer and As I looked around CSLOT, I an alphabet grid. This was saw about a dozen children an incredible feeling! Not be- running around, all being ing able to talk means not tailed by one or more aides. being able to share what An inability to speak is one you’re feeling and thinking. delayed milestone that realIt’s like being a doll spend- ly alarms most pediatricians ing your whole life in isola- and is usually a major concern tion, without dreams and that is immediately checked without hopes. Sure, it took out (“Developmental Delay.”) a long time before I could fi- It is the pediatrician’s job to n his book, Naoki Higashida, a thirteen year old boy with autism, continuously stresses how communication changed his life, saying:

refer the child to a suitable developmental program where their skills are tested, leading to their acceptance to a school like CSLOT (University of Michigan Health System).

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v Kristina Elliott, a speech therapist and head of the program at CSLOT, told me she believed communication is one of the most important skills a child can have, explaining how the speech therapists focus on helping children with “their language skills: receptive language, which is their understanding, and expressive language, which is their spoken language.” Improving these skills is important to help children with disabilities express themselves with greater ease.

Zachary, my three year old brother with Phelan-McDermid Syndrome, a genetic syn-

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drome associated with a deletion on the twenty-second chromosome, has been attending CSLOT for eleven months.

Tatiana, our mother, has seen an improvement in him and says he is “communicating with kids better than he was before” and that without this program he would not have improved as quickly. I agree; the improvement I’ve seen in my little brother is almost miraculous, his attention span and motor skills have improved drastically. Through one-onone occupational therapy and group play times, children learn not only to communicate with adults, but with oth-

er children, increasing social skills and use of language.

The program at CSLOT stresses early intervention, because the earlier the child receives help, the easier it is for them to learn. My mother explained that “the later you start the more difficult it is to get positive results”, which is why she is so glad that early intervention programs, like CSLOT, are providing help to children and families who would be left with unanswered questions and daily struggles with understanding what their child needs.

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You might think that speech is the only way to get your point and intentions across, but there is another way to say what you want without using the vocal nervous system. At first I never dreamed I could make it work, but now I am able to express my true self using only a computer and an alphabet grid.This was an incredible feeling! Not being able to talk means not being able to share what you’re feeling and thinking. It’s like being a doll spending your whole life in isolation, without dreams and without hopes. Sure, it took a long time before I could finally start communicating via written text on my own, but on that first day when my mom supported my writing hand in hers, I began to acquire a new way of interacting with others.

-Naoki Higashida, The Reason I Jump

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Chapter 2:Support A

t CSLOT, the focus is not just on the children, the program also focuses on the parents and help at home. Elliott told me that “[the program is] very family based as well so [they] support and train the families: siblings, parents, grandparents are always included in each of the sessions.” The early intervention program helps each family as a whole, even going as far as to recommend outside support groups to help family members and keeping them updated with goals and expectations. With home visits, CSLOT aides help children grow in the household environment, so their growth isn’t localized only at the school. Some methods used by aides are: Encourage play and social interaction, imitating the

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noises the children make, and focusing on non verbal communication, which have been shown to increase communication skills in non verbal children (Dawson).

Through CSLOT and online support groups, I have learned so much about what to expect from my brother’s condition, how to help him improve his attention span, motor skills and communication abilities. As I talked to Kristin Amos, the mother of a Christopher, a boy who has been attending CSLOT for 9 months, she confided that CSLOT has helped her come to cope with her son’s disability, saying “I think they just give us so much support, that I don’t even have to think about the fact that my son has a disability, because

when we’re here he’s just like every other kid that’s here, so its nice to have that.”

The supportive atmosphere of CSLOT not only creates a safe environment where it is okay for families to ask questions and get support, but also helps parents cope with the fact that their child has a disability. Luckily most cases of disorders like autism, are properly diagnosed now (Murray) so children and parents get the help they need, and all states provide services which, depending on the area, are usually free.

When I learned that such programs were provided it helped me with the anxiety that came with asking the “what now?” question, helping me relax a little and take things one step at a time.

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Us kids with autism would like you to watch out for us - meaning, ‘Please never give up on us.’

The reason I say ‘watch out for us’ is that we can be made stronger just by the fact you’re watching. Just going by how we respond, it’s difficult for you tell if we’ve understood what you’re saying or not. And often we still can’t do something however often you’ve shown us how to do it.

-Naoki Higashida, The Reason I Jump

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Chapter 3: Behaviour I

exciting. He’s now playing with other kids where as before, he wouldn’t even look at them, just being in this environment around them has made a huge difference.

When we first started, he I’m sure all of you know that would sit underneath that Autism has behaviour issues slide and wouldn’t come out attached to it, ranging from for anything. And we spent small tantrums, to all out probably two or three months physical aggression (Wash- doing that. Slowly he startington, DC: The National ed doing one activity after Academies), and let me tell another, and now he runs you, people’s judging stares around like any other kid do not help one bit. Amos lat- would and plays like its the er told me: “He wouldn’t jump thing to do” before, he wouldn’t ride on a swing, he wouldn’t go down Through group play CSa slide, so now he’s doing all LOT works to help children those things which is really through behavioural issues. remember the day my mother, with a smile on her face, showed me a shirt she found that had “Don’t blame my mommy, I have autism” written on it.

When my brother first started attending, he was really scared of circle time, a 30 minute long period where the children would sit and listen to the adults sing songs. He would spend the entire time crying, while aides gently held him and told him everything was alright. They helped him realize that circle time was nothing to be afraid of. Now a days, he loves it when I sing him songs, and even vocalizes along with me. Through their loving compassionate help, CSLOT personnel have helped many children through their tantrums and other behav-

ioral issues.

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“But I ask you, those of you who are with us all day, not to stress yourselves out because of us.

When you do this, it feels as if you’re denying any value at all that our lives may have- and that saps the spirit that we need to soldier on.

-Naoki Higashida, The Reason I Jump

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Conclusion S

ometimes I don’t know what’s worse: the confused looks from people who don’t know, or the sympathetic looks from people who do. It’s obvious my brother is different from other children, but to me he was always just a normal little kid.

CSLOT has helped me accept that my brother has a disability, and will never be like other kids

his age. And sure, my heart still plummets like a stone when I hear children younger than him speaking comprehensible sentences, but his radiant smile and beautiful laugh, always bring me back. Even without talking, my brother is still a sassy, lovable, three year old and CSLOT’s program has helped both of us so much. At the beginning

of my book I said I didn’t know how to approach this topic, and one book later I still have absolutely no idea, which is why I encourage each of you to learn for yourselves, and do some research on the beautiful and helpful work done by early intervention programs.

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Works Cited “10 Problem Behaviors.” Educating Children with Autism . Washington, DC:

The National Academies Press, 2001 .

Amos, Kristin. Personal interview. 21 Feb. 2014.

Dawson, Geri, PhD, and Lauren Elder, PhD. “Seven Ways to Help Your Non

verbal Child Speak .” Seven Ways to Help Your Nonverbal Child Speak.

N.p., 19 Mar. 2013. Web. 7 Feb. 2014.

“Developmental Delay.” National Dissemination Center for Children with

Disabilities. N.p., n.d. Web. 24 Mar. 2014.

Elliott, Kristina. Personal interview. 20 Feb. 2014.

Garachtchenko, Tatiana A. Personal interview. 27 Feb. 2014.

Higashida, Naoki. The Reason I Jump. London: Hodder & Stoughton Ltd,

2007. Print.

Hoffman, Jan. “Parental Study Shows Rise in Autism Spectrum Cases.” The

New York Times. The New York Times, 20 Mar. 2013. Web. 7 Mar. 2014.

Murray, Peter. “Autism Rate Rises To 1 In 50 Children – Cause Still A Mys

tery | Singularity Hub.” Singularity Hub. N.p., 4 Aug. 2013. Web. 31 Feb.

2014.

“University of Michigan Health System.” Autism, Autistic Spectrum Dis

orders (ASD) and Pervasive Developmental Disorders (PDD): Your

Child:. N.p., n.d. Web. 24 Mar. 2014.

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Sprouting Late Anastasia Garachtchenko

Anastasia Garachtchenko is a junior at Freestyle Academy, currently residing in the California Bay Area.

In the future she aspires to study art and design and eventually pursue a career in that field. In her free time she likes to play with her three-year-old brother and watch animated movies while drinking hot chocolate. Along with school she also does ballet, plays piano, and doodles.

Sprouting Late

Written and designed by Anastasia Garachtchenko