Conducted by David Celiberti, PhD, BCBA-D
David: Prior to responding to questions specific to contributions and involvement with the website, I was hoping you could share a bit about your background. Can you tell our readers a bit about your family?
Preeti: I grew up in India, where I completed my Bachelors in Computer Science and Masters in Computer Applications. In 1994, I married my wonderful husband and we first moved to the United Kingdom and then ultimately to the United States in 1996. Our son Ravi was born in Lancaster, Pennsylvania in 1997. We moved from Pennsylvania to Texas to Maine following my husband’s work assignments. Ravi was diagnosed with autism in Maine which is where he started to receive services. After searching for the best public schools for him all over USA, we finally settled in Maryland. My husband and I are both software consultants. Ravi is now 19 years old.
David: Sounds like you and your family have traveled quite a bit over the last 25 years. Let’s back up for a moment. Please describe the journey to diagnosis and ultimately to early intervention?
Preeti: I still remember the doctor’s words, “That concerns me.” It was at the 2-year check up with my son’s pediatrician. We were living in Houston at that time. I had just told the doctor that instead of saying “1,2,3,4,5” Ravi was saying “Wa, Ooo, Eee, O, I.”
The doctor’s words stunned me and my face went white. I said to the doctor that he had been calling Cheerios “Coco,” too. The doctor said that “Some word substitutions are okay but when every word is being substituted…” He stopped mid-sentence and said “We need to get a hearing test.” That night I slept in a fetal position. The next day, I went to the library and started looking for books about children who cannot hear.
Ravi passed the hearing test with flying colors. Before we could return for a follow-up we moved to Maine. But my fears had been allayed – his hearing was fine. He was fine. Or so I thought.
He still wasn’t talking though. My friends and family, living in various countries, but always my first line of defense, advised me to put him in daycare and maybe exposure to other kids would help him to start talking. While looking for a daycare I stumbled upon an ad for Child Development Services. I did not know at that time that it was a government agency. I called them for a list of daycares in the area, but also happened to mention that he wasn’t talking. They offered to do a screening for him.
At the screening he was unable to follow any directions and couldn’t perform even basic tasks, some of which I knew he was able to do at home. The screener finally said that he needed to have an evaluation by a team of doctors; “We need to find out what is going on with him.” She did not mention the word “autism.”
During the long 3-month wait for the evaluation, I did my research. One of the questions brought up during the screening was about his eye contact. At the time, I had reflexively answered, “Yes” but at home I started to notice that he did not make eye contact. At the daycare, I saw that other kids initiated and sustained eye contact, but Ravi’s eye contact was rare and fleeting.
When I googled “lack of eye contact” the word autism came up. That was my first exposure to the word. I, then, googled the word autism and then autism diagnosis. Everything seemed to match: the lack of language development and the lack of interest in other people. Most kids were diagnosed with autism around 3 years of age; he would be exactly three when his evaluation was scheduled.
I emailed my husband at work about what I had found, but he asked me to not jump to conclusions and to wait for the evaluation. I called my sister and she told me that maybe he just had ADHD and he would grow out of it as he grows older.
I also considered at the time that in most homes, parents point to pictures and the kid labels them. In our home, Ravi would point to pictures but I would have to label them. I noticed that if I mislabeled an animal, like calling a chicken a duck, Ravi would not move his finger to the next picture until I corrected myself. “He does understand language,” I thought to myself, he cannot have autism. It was only later I would learn that there is a huge difference between receptive and expressive language.
When, finally, the day of his evaluation came up, Ravi refused to participate in the evaluation. Instead he kept running around and around the room. The only thing he did well was to find the letters of the alphabet by visually scanning the board, skills not expected from a 3-year-old. It was only later, again, that I learned that those were splinter skills, not uncommon for kids with autism. I was a few hours away from the diagnosis but still kept thinking he couldn’t possibly have autism.
When my husband and I returned for the evaluation results, the lead doctor drew a Venn diagram on the board. The first circle was lack of language development, the second was lack of social interaction and the third was unique behaviors. A child can have any of these by themselves and it wouldn’t be autism, but when a child has all three: it is autism. She never said to me, “Your child has autism.” But when the person taking notes asked the doctor, “Should I write suspected autism or definite autism?”, the doctor said, “He definitely has autism. He is hardly making eye contact.” So that is how I learned: from a side conversation.
The next few months were a blur. I forgot how to smile. Child Development Services took my husband and me to visit various programs for kids with autism. We chose the Green House Nursery School because we liked their school model. It was a regular preschool with a special inclusive program for kids with autism. The team at Green House was incredible, each person seemed to be energized and engaged. Lynn, the principal at Greenhouse, was our family trainer. She came to our house and worked with Ravi. Looking back, I think when she was working with Ravi, she was actually showing me how to work with Ravi. Betsy was Ravi’s speech therapist. She later become a dear friend and also a fellow board member. A clinical psychologist/ board certified behavior analyst, the consultant on the team, was extremely knowledgeable, detail-oriented and responsive. When I was going through the biggest crisis of my life I found the most sincere and adept team in a tiny town in Maine.
David: : I am so glad you were able to find an early intervention program that appealed to you and your husband and found confidence in those working with your son. What role did you play in your son’s intervention?
Preeti:I initially thought that I would just drop Ravi off at school and they would “fix” his autism. I quickly realized that I had to be an active participant. I started by watching the therapists work with him. I wasn’t just looking for what they were doing but also trying to understand the principles behind the methods. I asked lots of questions. I attended many seminars. I read a lot of books.
Maya Angelou has said, “When you know better, you do better.” Armed with a theoretical foundation in applied behavior analysis (ABA) and practical observations, I naturally started working with him during our daily routines. I involved language in everything we did together: emptying the dishwasher, doing the laundry, making breakfast, etc. We counted steps every time we went up and down the stairs. We played language games in the bathtub (e.g. “pour water with the right hand on the rubber ducky’s left eye”). We read books every night. When Ravi wasn’t able to answer questions, I would give him written choices on the Magnadoodle and he would circle his choice. Very slowly, but surely, Ravi’s expressive language improved and so did his eye contact and social interaction. Having something to do was actually a relief for me. From being powerless I started to feel powerful. Watching gains, however small, however slow, made me smile again.
David: Thank you so much for sharing those words of encouragement, particularly for our readers who are parents of newly diagnosed children. It sounds as if you were very involved and worked hard at expanding upon his spontaneous language? What specific strategies did you find the most useful?
Preeti: We tried everything we could. We practiced manding and intraverbal skills whenever we could and I relied heavily on incidental teaching to expand his language.
To help me better understand the concept, the consulting psychologist said that intraverbal skills were critically important and could actually be practiced in a pitch dark room as no materials are needed. Say the first part of a phrase, and have Ravi complete the phrase. You say “Mickey” he says “Mouse”. You say “Donald” he says “Duck.” So at night, after lights were out, we practiced intraverbals. We went on for a long time but when I did eventually run out of phrases and started to practice fill-ins, I went on to animal sounds: I would say “Dog says” and Ravi would say “Woof.” Then names of books: I would say “Green Eggs and,” Ravi would say “Ham.”
My first exposure to incidental teaching was when I told the consulting psychologist that Ravi was saying “Pickaaa” instead of “Pick me up.” He suggested that I model “Pick me up” every time he said “Pickaaa.” He explained that in general, if Ravi was using gestures for anything, I should require language. If he was already using some form of language; I should shape it to be more understandable. And once I got some understandable language, to expand it to fuller sentences. Always use every opportunity to induce language. If there is no opportunity to capture naturally, then sabotage the environment to create an opportunity. Keep things in sight but out of reach (e.g., spoon for eating, pencil for writing). Play naive: if he gestures, pretend not to understand.
It made so much sense to me. I followed the advice and though it took a painfully long time, he did start saying “Pick me aaa” and then “Pick me up.”
Another opportunity came up when Betsy brought the Cheerios book to our house. It had small holes, which Ravi would fill with Cheerios and then go on to eat them. Betsy showed me an opportunity for inducing language there. I would hold the Cheerios box and hand him the Cheerios only when I got some language. We loved the book and we would go through it several times a day. I looked for and bought other Cheerios books and even a Froot Loops book. We worked with the book intensively for more than a year. His expressive language improved. We went from a gesture to sound to word to phrase to sentence to expanded sentence. Grabbing the Cheerios box morphed to saying “CoCo” to “Cheerios”. And then to:
“I want Cheerios.”
“I want Cheerios please.”
“I want 4 Cheerios please.”
“Mummy, I want 4 Cheerios please.”
“Papa, I want 4 Cheerios please.”
Another very important skill we worked on was saying “No.” There was a book that Ravi didn’t like and every time I brought it out, he would scream. I wanted him to say “No” instead of screaming. I brought that book out every night without fail. I would only put it away when he would say something close to a “No.” When that worked, I used the same technique to get a “No” for other unwanted items.
And sure enough, we also had to teach him to say “Yes.” When we were moving from Maine to Maryland, we travelled by car. I happened to have a big bag of chips. When asked, “Do you want chips?” Ravi would respond by saying “Chips” instead of “Yes.” I wouldn’t give it to him until he said “Yes.” Sometimes when he couldn’t remember what to say, I would offer the same chip to his Dad; Dad was happy to provide a model for him.
David: : I really appreciate how generous you are with sharing the details underlying your efforts with your son. Please describe the next chapter of your journey from early intervention to public school.
Preeti: I had watched an effective and well oiled machine at Green House in Maine and when we moved to Maryland I tried to implement all the ideas with our own team at home. Ravi was attending school in the day time and in the evenings we had therapists working with him every day in our home. The therapists were sponsored by the Autism Waiver, a program of the Maryland State Department of Education. We had monthly meetings at our home with our therapists and our new family trainer, the consultant to the team, Stacy Whipp. She has been our family trainer since Ravi was in first grade. She is naturally resourceful, very knowledgeable and genuinely cares about me and Ravi. She always lauds our team on our successes but right away pushes us further to work harder with Ravi. She never lets us rest on our laurels. She is rational when I am emotional. She is both my reality-check and my shoulder to lean on. She has proven to be a worthy successor to Lynn.
I have been blessed with the amazing people, both at home and in the community. I have received their help to overcome many problems. For example:
- Ravi’s occupational therapist from school called me one night, when I was in the kitchen making chapatis, all covered with flour. She had discovered an alternate way of tying shoelaces and was going to work with Ravi at school and wanted me to follow-up at home with him.
- Ravi’s elementary school teachers took it upon themselves to take him grocery shopping on community trips when I told them that he had a habit of running around the store.
- Once, Stacy came to our house at 7AM to help me with a task analysis when Ravi was missing his school bus as many as three times a week.
- We did a reading contest with our team to see who could read the most books with him.
- Being a data analyst by profession, I collected data on Ravi’s talking and even created “Grand Mander Awards”, given to the team member who could make him mand (request) the most.
When Ravi was 12, I was called to a meeting at his school and was happily surprised to learn that he was ready to be moved to a less restrictive environment.
Fast forward to now, his new school has a great program for kids with special needs. They have a very well-defined upper school program. We’ve had our ups and downs but he has been doing well: He is making good progress in Math, being able to do addition, subtraction, multiplication and division. His reading comprehension has gone up several grades and we continue to work on it. He was in his school’s choir, not only playing musical instruments on stage, but even singing the song Yellow Submarine. He came second in the spelling bee, which gave us some bragging rights.
David: Preeti, this is wonderful and inspiring. We are fortunate that your shared your experience with the spelling bee. Readers can find it here. How you are planning for his future?
Preeti: I have the same dreams for Ravi as most mothers: I want him to have a happy and purposeful life. I hope that one day he can live independently. I hope that one day he is able to hold a job. I also hope that one day he can get married. But having high hopes does not preclude me from making backup plans for him. If unable to live independently, I am thinking that we could buy a two-story house where he could live above us. We would give him as much independence as possible, but we would be always there when he needs us. We keep working so that someone can replace us when the time comes. If for some reason that doesn’t work, we will also look into group homes. We have put into place services he will be needing like Metro access for transportation, DDA, State ID, Guardianship, Special Needs trust and SSI.
David: I appreciate the many layers to how you are approaching the future and your generosity in sharing your experiences with our readers, many of whom are parents and caregivers of young people with autism. In many ways this speaks directly to the work you have been doing over the last ten years with ASAT. What is your current role in ASAT?
Preeti: I am leading the website committee and have assumed a wide array of duties. I would like the ASAT website to be the bridge between parents and scientists. For parents and providers, I want it to be the site to turn to when seeking to separate the anecdotes from the scientifically accurate information. For scientists, I want it to be the site where their important work can be shared more broadly.
As part of my role, I maintain a comprehensive list of all articles published in our newsletter and upload new content to our website. I recently took a course in WordPress to formally learn what I have been learning in bits and pieces and now I take care of the majority of the changes to the website. Our webmaster is fantastic in helping me whenever the task is too big or too complicated for me. I also act as a liaison between our webmaster and other members of the board.
David: I want to take this opportunity to acknowledge all of your important work in helping to improve both the content offerings and overall layout of our website. On a more personal level, what suggestions do you offer parents of newly diagnosed children?
Preeti: However strong someone might appear to be on the outside, there is no one who isn’t heartbroken about their child’s diagnosis. I found a path to healing when I found that there was something that I could do to help my child. Each person’s journey will be different but I do want to share some thoughts that I wish I had known at the beginning:
- Focus on the small picture: Take it step by step, bit by bit, little by little. Sometimes the big picture is so scary that it might scare you into inaction. Just solve one problem and then the next and then the next. Focus on the small picture.
- Talk: Even if you don’t think your child understands, keep talking to your child. In our case it took us years to realize that he had been listening to us the whole time.
- Listen: Listen to all the people who give advice, whether a consultant, a therapist or a neighbor. That doesn’t mean follow every piece of advice blindly. But do listen, process and thoughtfully accept or reject.
- Learn: Learn as much as you can. Learn from books, learn from people and also learn from your child.
- Ask: If you don’t know something, ask. In my experience, people are more than willing to explain.
- Make time for yourself and be joyous in doing that: Make sure you make time for yourself. And also for your spouse, your family, and your friends. When you do spend time, do it guilt-free. Do it with joy, not with a cloud hanging over you. It is a long journey and it cannot be done without steady support.
- You are the determining factor: A parent’s involvement will make the biggest difference in your child’s life because a parent is the common thread throughout their life. A parent’s dedication towards the child inspires everyone to work harder with the child. A long steady path to work with your child is better than a burst of energy followed by burnout.
David: What advice do you have for new professionals in the field?
Preeti: I do have a few thoughts about this.
- Be positive when talking about a child’s response to intervention. During a particularly frustrating day, I said to Lynn: “Ravi cannot do anything right.” Without missing a beat, Lynn started reciting all the things that Ravi does do right. She also pointed out the gains Ravi had made since we started. My advice to professionals is to think of a reply to this question while driving to the child’s home or waiting for an appointment: “What does the child do right?” We, parents, sometimes need reminders.
- Encourage parent participation, to whatever level possible. One hour of therapy a week can multiply by a huge factor if parents reinforce whatever is taught by therapists.
- Some parents have many questions, please take the time to answer them and check in often.
David: Wonderful words of wisdom. Any final thoughts?
Preeti: I sometimes imagine a day when autism has disappeared from our family and from every family affected by it. I imagine that Ravi is able to talk to me. I hope he says that he now understands why I made him use his words for everything instead of just giving him things. And he now understands why we had therapists working with him daily. And why we were always in his face pushing him further rather than just letting him be. I also hope he says that, “I turned out okay. Now you can rest, Mummy.”
Message to anyone who has ever worked with Ravi: It truly takes a village. I thank each and every one of you from the bottom of my heart for the role you have played in helping Ravi and in turn helping me out. Each step matters, each gain is important. Each one’s role is like a piece of a jigsaw puzzle, which we are still putting together. Big or small, the puzzle wouldn’t be complete without each piece.
Message to my wonderful husband: I know this is not what we signed up for when we got married. But if adversity reveals character, what a beautiful revelation it has been. You have attended every IEP meeting with me. No matter how challenging it may have been when we took him out in the community, you still always wanted to take him. It is a testament to your patience and love for him that we can now take him with us, everywhere we go. Throughout the journey your love for Ravi hasn’t dimmed even one bit.
Message to my Ravi: My face still lights up when you enter the room. My heart still dances when I hear your voice. I still get filled with inspiration to work harder when you say a new phrase or when you learn a new skill. Even though the journey isn’t over, there’s a lot still to learn and do. There is just one thing I know for sure. I might not have every answer but I don’t need to. As long as I have the village around me: we will find an answer.
David: Thank you so much for participating in this interview! I have no doubt that our readers will be touched by your heartfelt words and inspired by your positivity and “can do” approach to raising a child with autism.
On behalf of ASAT, we are forever grateful for the contribution of your time and talent so that parents and other family members can garner reliable, scientifically validated information. Preeti, we are lucky to have you!
Citation for this article:
Celiberti, D. (2016). Interview with Preeti Chojar. Science in Autism Treatment, 13(4), 3-11.