Growing up with Reyansh

Hi, This is Saumya, A daughter, a wife, and now a mother. Today I am going to share a very dominant part of my life with you all, especially parents. It gives me courage as well as pride to write about something which is very personal as well as a very important topic to discuss or share with everyone about my son’s journey or my journey as a mom. 

I think I am still in a process of learning and developing myself to create a brighter future for my little man. 

Reyansh is the name of my little one. He not only brings joy to my life but makes me understand that life is full of scuffle and without facing them no one can learn a thing. Being a mother is different: it means providing that indescribable feeling of comfort, no matter the age of the child

My life was going very even until I discovered through my brother that Reyansh is suffering from autism. Yes, you read it right my little munchkin was suffering from autism. How I took it! 

At first, I cried, yes mothers can cry thinking why me and why my little one has to face everything. 

In the USA autism affects an estimated 1 in 54 children as per google. Autism is a range of neurodevelopmental disorders that impairs the ability to communicate and interact. The severity of the symptoms varies widely among affected individuals. How I came to know it is through my brother who visited us for the holidays. He read his behavior throughout his stay. Reyansh was 2years and 6moths old at that time.

Symptoms that made Reyansh a little different from other kids includes:

1. Avoidance of Eye Contact

2. Behavioral Disturbances (Headbanging, hitting his chest, clapping hands if he is getting       

    irritated, playing with sliding doors)

3. lack of empathy

4. social withdrawal(not playing with other kids)

5. Delay in Learning to Speak (i don’t count it under the symptoms. Speaking late is only

    dependent on the child’s capability.)

These are just a few symptoms that we faced. My brother told me that despite his disorder he is a very bright child and is capable of doing and thinking extraordinary stuff. 

For treatment, we went from one doc to another. We had his hearing test which came out to be normal(a relief to us)

Then we went for his occupational therapy, speech therapy, working on his motor skills, and many others too. Only one doctor amongst all told us that yes Reyansh is suffering from autism. We did continue it for about 10-15 days and later on decided to do everything in India. I came here in March 2020. Because of Corona, it was becoming difficult for me and my parents to find a proper doctor and therapy for Reyansh. We were managing stuff by ourselves, because of the lockdown. For two months we searched for one doc to another for online classes. We even had a word with one of my sister’s friends who was managing a day school for kids. We quickly enrolled Reyansh. The main problem we were facing was lack of interest as well as lack of eye contact. But we did not quit and continue with the classes. 

Here in India Reyansh was meeting many people he hasn’t met in his life. His first reaction to everyone was “who are you? Please go away”

He was totally on me at least for 2-3days. His food, his sleep, his roaming activities, his potty time everything was on me. My family made extra efforts to make him understand that they are his family too. It was very hard for them to take Reyansh, to feed him, to play with him as he was totally on himself in America and did not know who his Nani, nanu, or mausi are. Although we did a video call regularly but what we can feed a child in front can not be fed through the camera. 

His Avoidance of Eye Contact decreases. He started reacting to his name. He knows whom he is talking to. This happens only through the continuous efforts that we all were making. Before coming here he was not introduced to his emotions. I know it’s hard but he was an emotionless baby before but not now. 

We were searching for a good doctor for him and we found out about Pushpa Khanna Memorial Centre(PKMC). We went to search for his speech therapist and he recommended PKMC after seeing Reyansh’s behavior. It was mid of July when we came to know about them. My father did not think twice and called them. In another 20min we were at the center. 

I was having a very mixed feeling about all this but yes after meeting them I can say miracles do happen. In our case time is playing a very crucial role. After meeting with Ms. Ruma Chaturvedi, the director of this center I was sure that my child is going in safe hands. All the people working there are angels coming directly from heaven for us. 

We took their occupational therapy classes which are still taking. Dr. Prapti Saxena is the one who is now a family to us. She not only made us understand how to deal with our child but in the initial days she first started with me as a mother where I am. She cleared out the things in my mind and even took extra efforts to talk to my parents as well. As it is not only a mother who is going to deal with the child, it is the whole family. Through her classes alone we understood where we are with Reyansh and what needs to be done. With every activity, Reyansh learns a new thing about himself and so do we. His behavior, his body awareness, mind and body coordination, his thinking process, his body posture, when to say yes, when to go up, what to go down, all tiny little things that Reyansh was missing in his life, he is doing now in her sessions. Through these sessions, I came to know that Reyansh is a visual learner. He understands things very clearly if they are visual. 

We were taking these classes regularly and then in September 2020, Mr. Satyam Tiwari introduced us to the program named CST(Caregiver Skills Training Program). This program has been developed by the World Health Organisation (WHO) in collaboration with Autism Speaks, USA for caregivers/parents of children with developmental delays and communication challenges, aged between 2 to 9 years, to improve their child’s communication, play, behavior, and independent living skills. This was the first time they launched it here and PKMC was amongst one of the five centers in India currently running this program. I was lucky enough to be a part of the first batch. Started in Sep 2020 and ended in Nov 2020. What I loved the most about the program is that it not only covers your child’s behavior but also your actions and reactions to his expressions. My life totally revolves around Reyansh. They even cover topics like taking a break from your child and sometimes it is good to take out time for yourself. If you are not healed from inside how can you heal a child? 

Before joining PKMC we were just doing everything without knowing the right path, this program gave us direction, gave us the path which only goes to the betterment of our child’s future and ourselves too. 

Now I know if Reyansh is doing anything, what is the reason behind it. This program makes me understand my child in a better way. His actions, his emotions, his pain, his drama, his hunger time, how I have to talk to him, what should I do to make him understand that he is right or not, how can I say no to something without using no to his face. There is so much to share, this program gives me a different scenario to think of. Taught me how to overview my child. They take so much pain as an individual for us for our special one. Home visits are there. Because of corona, we did it online. 

In our daily lives, we do get irritated from stuff, we do think gosh! I don’t have my life now, why am I supposed to go on and on with these never-ending duties. As a mother I am telling you it is ok to get irritated, it is ok if sometimes we think about ourselves. Do not punish yourself for anything. God gave us a very special gift, which he thinks only we can take care of. We can not do it alone. That is why he send these angels to us in my case it is Ms. Ruma, Mr. Satyam, Dr. Prapti, Ms. Pauravi, Ms. Imroz, and Ms. Kamakshi. I am grateful that I found them. They are not only providing the necessary support and treatment to empower kids with special needs through therapies, training, and skill-building but also aim to sensitize and create awareness in society so that it respects and provides equal opportunities to people with special needs.

My only message for all parents out there is please do not hesitate to tell that your child is a special one. Yes, I am still in the process, Reyansh now knows when to cry, when to laugh, what’s his name, what he is eating, his favorite color, when to sleep, when to shower, what is night, what is day, his mausi, Nani, nanu and most importantly now he knows where his home is. Now he roams around for hours with his nanu, or mausi, listens to bhajans with his Nani, plays along with all four of us, and even interacts with other kids. Yes, he still faces speech problems but he is trying and so are we. 

As PKMC says “Every Special Need child has a right to receive the best intervention at the needed time, available in their immediate vicinity.”

Ms. Saumya Rastogi