Interviewer: Meghana Repaka | Published on August 18, 2020 | 7 Minute Read

1. Tell me a little bit about your family and your daughters.

My name is Sudeepthi Manukonda and I have two kids. My son is 11 years old and he's in fifth grade going to six now and my daughter, Sanskriti who has autism is 9 years old and she has currently finished third grade and she will be going on to fourth grade. My husband, Sangeet is a Computer engineer and I work as an analyst.

2. What are some of the behavioral issues you see on a day-to-day basis with your daughter.

She is a very independent child to start with and since my elder son also had speech delay, I did not think it was a problem when she had speech delays as well. I just never questioned anything because she not only did not have physical problems, but she was reaching all her milestones like all her friends. Yes, she was not able to speak like a normal child but it was the same with our son so it never raised a concern to us. It all happened when she was around two and half years old when relatives and friends told us to maybe go and see a doctor since she wasn’t speaking. I was not concerned with her, but I took her anyway. We were in India at the time and during her diagnosis the doctor did an hour-and-a-half study on her and said your child has autism. At the time I had no idea what autism was, I'd never heard that word to start with until the doctor said your child is mildly autistic. He said that she was in the very beginning of the spectrum and so we got started with different therapies and everything. Even that time it was like, okay, maybe it's something that would, you know, correct itself. Even though we didn’t see any evident issues with her, we had a difficult time reading her emotions. We could not communicate, especially when she cried we were not able to figure out what the reason was. It would be frustrating both ways since she would not be able to convey her feelings and we would not be able to understand her fully. Other than lack of communication it is hard to teach her manners and how to behave outside in a public space. For example, at home if she sees something on my plate that she likes, it is okay to have her take it off my plate, but when we go out to a restaurant that kind of behavior is not acceptable so it is hard to teach her to not to get up and take it off someone else’s plate. Another thing is she tries to follow a certain routine, so sometimes if the routine gets messed up she kind of gets upset, but she tries her best to understand that she is not supposed to do something and makes an effort to stop doing it in the future.

3.When she was diagnosed in India, you said that the doctor recommended some therapies. Which therapies does she get on a regular basis?

The doctor said she needs speech therapy and he advised us to be on a gluten free diet. So for a year we were on a strict diet. Unfortunately the supplements were not working and she was getting sick quite frequently. She was falling sick very often and she became very frail, so I thought that the diet was not important

if she was becoming susceptible for all illnesses. At that point I had to make the difficult decision and put her on a normal diet. Since the doctor recommended speech therapy I started looking for therapists. I know there are a lot of therapists for me, but honestly speaking it was very difficult to find a good therapist. I had one therapist that would come to my house and work with Sanskriti for like 20 minutes. However, this method proved to be very distracting for Sanskriti so we didn’t go through with it. When she started to go to preschool she started working with the special teachers there. They got her used to social situations which helped her more than the individual therapists so we just stuck with them. We were also familiar with some speech services that we used for our son when he was younger so we looked to those therapies for our daughter as well. She started with a half day school with the services provided and slowly transitioned into the full day program. Basically at school she gets speech therapy, occupational therapy and physical therapy. She goes to a special education class in her school, but also sits in a normal third grade class for about an hour in the morning.

4.What would you say is the most challenging aspect of raising here?

I would say the challenging aspect is making people and kids around her understand why she is the way she is. My son would ask why his friend’s sisters were a certain way and why his sister was different. The both of them get along really well, but sometimes she likes her own time and prefers to not play with him. She also is withholding with her affection which can be surprising to him sometimes. In general there is this constant pressure and judgment from people around you on either how you raise your kids or about her behavioral choices.

5.What is the most rewarding aspect of raising your daughter?

Well my daughter never leaves my side, she is always next to me and I love that. I cannot trade the time that I get with her for anything in the world. She is always lively and joyful and wants to see that reciprocated by me. She will stay by me, hug me until I have a smile on my face. She loves to sit with my husband and I and talk about her day, so any time we find, we sit down with her even if it is just half an hour to talk to her and listen to her.

6. My nonprofit looks to do more interactive and hands-on activities with kids because we feel it will spark an interest within them, so what are the activities that your daughter enjoys to do in her free time?

My daughter is very independent and loves to get her hands messy. She doesn’t necessarily have certain things she looks for during her free-time. For her if she finds an activity that she really wants to do then she is very passionate about it and will be focused and finish the task at hand. However, if we ask her to do something she has zero interest in, you can spend an hour trying to get her to do it and she won’t do it. The things she does find exciting are dance and music, but at the same time if I enroll her in a music class she has no interest. So I'm still trying to find that point where I can make her sit down and consistently do something, but for the most part now we let her do things she is passionate about.

7. What message would you like to give for other families who have kids with special needs?

I would say that you are not alone and to not compare your kids with others kids. My daughter is more organized and understanding than my son, but she can’t communicate as well as my son and therefore is classified as not “normal.”So remember not to classify the child on what it is supposed to be normal according to the books. Do what you think is right and do what is right for your kid. It is your job as parents to make sure that they have the basic life skills to carry themselves. There are a lot of things that are frightening when you think about the future but at the same time, you have to give the child a chance to explore themselves and not listen to other people's opinions. I was judged as a mother. People told me I was doing it wrong and gave me various pieces of advice on how to improve. You have to make sure they don’t get to you, because you are the one who knows what's best for your child.

Another huge societal factor is intelligence. Just because somebody else is a genius doesn't mean your kid is not intellectual or capable of understanding and carrying out things. So do not not pay attention to what others opinions are just make sure you are doing what is right for your kid and what is needed for your kid. Even for my son I do not set any rules. I tell him that your educational abilities come second, his kindness and caring nature is more important. I am not saying it won’t be hard, because I went through a period where I questioned myself and wondered if I was doing something wrong, but it is essential to give yourself some grace as a parent and a caregiver.

8. How important it is to you to spread awareness and find common ground with the individuals of the special needs community.

I think it is very important, especially right now because there has been so much change from the time I found out about autism to now. It is also important to talk about such things because we need for people to understand that it is not a disease. Everyone seems to have the wrong notion of people with special needs and immediately label them as people with a disease or abnormality. A lot of people are quick to judge and say that it is someone's fault for the way they are, but in reality it is not your fault in any way. In fact being a mother of an autistic child has made me a better person. I have become more empathetic and understanding through my journey as a parent of a child with autism. I just think if people are open and stay current with everything they will see what I see everyday in my children.