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
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.
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.
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