Thursday, January 25, 2024

Talking Fingers - Meet Ishaan Saxena

  Dear friends, I am so proud of our Talking Fingers family and can't wait to introduce them to you all. Today, I am so excited to kickstart the interviews of the co-author families from the second volume of Talking Fingers. Let's meet Ishaan and his parents - Monalisa and Sumit Saxena and his super cute sister, Nysha.



                                 



Q) Please share your autism journey with us.


Ans: Navigating the journey as parents to a 13-year-old boy with autism has been a transformative experience. Ishaan was diagnosed at three years and we were completely unprepared as to what this diagnosis meant. We immediately started the rounds of doctors and reading up to understand what we could do and would initially get frustrated when we were met with blank stares instead of any ‘progress’. The most important lesson we learnt  over time is to do things at his pace and not at the speed we think is ‘normal’ . We have grown with him, taking nothing for granted and celebrating all the little things that others might not even think about twice. Every day brings new insights and lessons, making us more resilient and attuned to the unique challenges  that come with raising a child on the spectrum. Our commitment to understanding our son's needs and celebrating his individuality has been a driving force in our parenting journey. We've learned to appreciate the beauty in his unique way of viewing the world instead of trying to make him fit in with expected norms. Together, we've embraced a supportive network of professionals, therapists, and other parents who share in the journey, offering guidance and camaraderie. Witnessing how far he has come makes it all worthwhile.

Q)How did you develop communication skills in Ishaan


Ans: When Ishaan was about 9 years old,we realised that we only knew Ishaan’s preferences and choices in food and activities – not his opinions on anything since communication was limited to pointing at best. He did not take to sign language and was not able to grip a pen or pencil enough to be able to write properly . However, we figured that he was a visual learner and was able to string together words through pictures. We were doing PECS(Picture Exchange Communication System) then in speech therapy which he was somewhat comfortable with. However this did not seem very sustainable  since it became a very bulky file of pictures that we had to keep taking out. At this time, we heard about assisted communication devices and an Indian one called Avaz. We tried it but he did not take to it on the first try. At this point, he was not imitating any action at all. We figured that we first need to work on imitation before trying any form of communication. We worked with his therapists and teachers to enable him to imitate. Slowly, he started imitating and this time around, when we re-started Avaz, he was able to figure it out. Since then , he has been exploring more and more and communication has increased by leaps and bounds. We have realised the extent of his vocabulary and his thoughts!

Q)What hurdles have you faced in this journey and how did you overcome them...

Ans:

·        In the initial period, the biggest hurdle was to overcome our own biases and fears! It took a while to put these aside and figure out what was important to Ishaan and what would benefit him the most.

·        One of the most difficult decisions was to shift him from a neurotypical school to a school for children on the spectrum when he was six years old. It felt like we were giving up in some way. However, we could see the change in him once he was removed from social expectations and pressures – he thrived and was so much happier! The lesson we learnt early was to appreciate his uniqueness and not compare him to others.

·        Social integration was also a hurdle though he is a happy child and does not shy away from social situations. The issue was in getting others to understand him! We felt that enabling communication in some way would be the most important thing we needed to strive for – if he could communicate, he would be happier. To this end, we collaborated with speech therapists and used visual aids and assisted communication devices to find effective strategies that suited his needs

·        Throughout this journey, the importance of emotional well being for both him and us  became evident. Seeking therapy for him while also practicing self care and fostering a sense of patience and complete acceptance were crucial and remain so in overcoming the hurdles we faced.



                                   



 Q)Your advice for other parents..


Ans:The most powerful mantra that changed our outlook has been –‘Assume competence’. Never underestimate your child. It might take a little more time but they will get there – perhaps through a different path .  

Everyone’s journey is bound to be different, however, based on our own experience, some heartfelt advice:

1.      Embrace your child’s uniqueness – throw out thoughts of social expectations and norms

2.      Educate and arm yourself with knowledge about autism so that you can take informed decisions.

3.      It is not a disease- NEVER look for quick fixes because there are none

4.      Build a TRIBE, a support network – other parents, support groups , special educators who can provide emotional support and practical guidance

5.      Advocate for your child -always

6.      Remember to prioritize your own well being as well to maintain emotional resilience

7.      Celebrate every success no matter how small, find joy in small moments

8.      Embrace flexibility and a willingness to adapt – since it is a continual process

 

               Now, let's meet the star of our interview - Ishaan.


                              



   Q) How old are you, Ishaan..

Ans :I am 13 years old

   Q)Please tell us about your school..

Ans: My school is called ADAPT . I like going to school. We have fun. There are many types of kids in my school. I have friends.


Q)What are your favourite subjects/topics

Ans:Maths and Sports


Q)Please tell us about your hobbies.

Ans:I like running, swimming, cycling and skating



                     



Q)How do you spend your day..

Ans: I go to school in the mornings, I skate and cycle in the afternoon , go running in the park in the evenings . I like listening to music as well.


Q)Do you enjoy going on vacations, please tell us about your recent or favourite vacation..

Ans: yes . We went to the hills for a vacation some time back. I went with my parents and sister. The place was called Kufri. It was cold there . We had a bonfire and played music. I saw apple trees. We had apple pie .It was very tasty.



                        



Q)What is your preferred mode of communication - writing/typing. Please share a few details.

Ans: Typing is easier for me. It is difficult to hold the pen and write.


Q)How was the experience of being a co-author in Talking Fingers book..

           Ans: It took a long time to write everything but I liked the questions


Q)Your thoughts on how communication is more important than speech...

Ans: I just want people to hear - they can hear through written word as well as speech.

 

            Ishaan is blessed with a cute sister who is wise beyond her years. Let's get to know her a little.


                                   


 Q) Please tell us a little bit about yourself, what are you studying and do share your hobbies.. 

Ans. My name is Nysha and I am 10 years old. I am in Grade 4. I like playing the piano and singing. I also love art – I do acrylics and charcoal sketches. 

 Q)How was the experience of growing up with Ishaan please share your thoughts..

Ans. Sometimes it is a little tough, but Ishaan has always been caring and loving towards me and tries his best to understand me. Imagine how frustrated he must be, not being able to make us understand his thoughts and opinions. We just have to be patient  and never give up. 

Q) Please share your advice for other siblings 

Ans. A bit of advice for other siblings would be that include your sibling in activities and do it with them, because sometimes they feel left out. Another advice would be to help them find their passion, help them try out different activities such as art, music, sports etc. You will be surprised at what might unfold.

 

               I am sure you are as delighted to meet this lovely family as I am. They have together traversed the journey after Autism diagnosis and shared many wonderful insights with us. With such a wonderful and supporting family, I am confident Ishaan will fly higher. May all your dreams come true, dear Ishaan. God bless you! 


         You can purchase the paperback or kindle version of 

        Talking Fingers Vol.2 on  Amazon -  Here





DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.