The ninth interview in the Talking Fingers series features Tarun Paul Mathew, a budding musician , writer and a poet. Let's get started by chatting with his mom and my co-editor, Chitra Paul
1. Please share a few details about your Autism journey with special focus
on the phase of developing communication skills in Tarun.
Hi, my name is
Chitra Paul, and Tarun is my son. Tarun is a 17-year-old non-speaking autistic
who types to communicate.
Our son Tarun came
into our world in the year 2005 bringing us a lot of joy and happiness. He was
diagnosed to be autistic at the age of 3 years in Kochi. We went to CMC Vellore
for a consult. There both my husband and I undertook the parent training program
offered at Nambikkai Nilayam. This was a 3-month residential program and helped
us better understand and connect with Tarun. At this point he had a lot of
difficulties including, lack of speech development, oro-motor difficulties that
translated into a very narrow repertoire of food choices (specifically a lack
of chewing and a need for specific food textures), absence of toilet skill
development, major sensory issues etc.
The only early
intervention that Tarun had was what he experienced through his interactions
with both his parents. Something that I absolutely enjoyed was reading for him.
Reading together was something we enjoyed doing together although at that point
I didn’t have a clue whether he was able to understand more than just
identifying the characters by pointing them out. However, once he started
writing first with support and later typing independently, it became obvious
how much of an impact the early reading had had one him.
At the age of 5, he
was accepted into a mainstream school that was just starting out. From there on
his journey has been very eventful. The school was very supportive of him and
supported him throughout the entire 12 years he spent there. Over the years,
many teachers and his classmates have always been very supportive and included
him in every aspect of school life in whatever manner he could join in. He had
a wonderful experience being part of regular classes, sports times, all school
programs – assemblies, festival celebrations, annual days, sports day,
exhibitions, field trips etc. He was also provided a lot of accommodations
including being allowed to take his iPad into school to do work, taking breaks,
a support teacher, later a peer buddy to support him, exemptions from language
classes, differentiation of question papers, etc. Once he started to write and
type, the school also accepted his abilities and further supported him with the
right accommodations. This year in March he was promoted to Grade 10 (after
writing the same exam papers that his classmates wrote); an achievement nobody
had ever imagined coming true at the time of his diagnosis. Presently he wishes
to continue his learning and this he is doing so through online mode.
Communication was
limited to speech therapy initially as most other parents experience. Though he
would communicate minimally with us through pulling our hands, the larger part
of his communication involved crying. I must mention about the one person who
literally opened the doors of communication for Tarun – his special educator, Ms
Priya. She just believed in him and provided hand support to write around when
he was 7 years old. The gates just opened and ever since he has been either
writing or typing. Since writing was extremely difficult for him, we soon
guided him to use the keyboard. Over a period of about 4 years, he finally
gained independence in typing. Communication changed everything for him and us
– it helped us see his abilities as well as understand his difficulties too.
Tarun has always
been a child eager to learn even though he has huge struggles in terms of motor
coordination difficulties and being an unreliable speaker. He has also been
learning music – he learns the keyboard and is trying his hand at digital art.
Reading is something he enjoys and watching nature documentaries.
For us his parents,
acceptance was never an issue right from the beginning. He was our son first and
foremost, the diagnosis only helped us to understand his differences and how we
could support him better, advocate for him better.
Our wish for Tarun is that his smile
always stays as sparkling and heart-warming as ever and that he has a lot of
caring people in his life, people who love and accept him the way he is.
2. Your advice to other Autism parents...
a.
Autism is just a label, let it be just that. Do
not forget the child behind the label. Be the parent your child needs you to
be, not the parent you planned to be.
b.
Communication is the key for us to understand
our children and their world better. So, invest in it like you would in an
insurance policy, it is the best one for your journey with your autistic child.
c.
Always believe in your child and their
abilities. Maybe they can’t express the way we understand but remember they can
learn. Always presume competence. It makes all the difference for your child.
d.
Autistic children grow up to be autistic
adults. So, always treat your child age appropriately. Do not infantilize them.
Remember the world watches and learns from how we interact with our children.
e.
Always remember you are the best advocate for
your child, so be an active ally and their strongest advocate, they need all
the advocacy to just survive in this world filled with neurotypicals.
f.
Do also remember that most people do not know
or understand autism, so be patient and help them understand. Look back at your
own life to understand how long you took to gain a basic understanding of
autism and your child. As allies and advocates, spreading awareness is our
responsibility.
g.
Never every forget that however much we may
read and learn about autism, it is not our lived experience as neurotypicals.
So, listen to autistic voices. It will help you understand your child better.
Strive to include more autistic voices in the conversation about autism because
they are the real experts.
h.
Lastly, take care of yourself too. Do not feel
guilty to spend time on your own mental and physical health. This is a life
journey, and you will need to be present and active in your child’s journey.
So, invest in yourself.
Now, let's meet the star of the interview - Tarun
1. How old are you? What are you studying?
I turned 17 this year though feel lot older. Just perhaps my
thoughts. I would like to find great happiness through the nuanced balance
between my still teenage thoughts and the older thinking.
Have completed my grade 9 and plan to keep on the attempt right
in until I finish my grade 10.
2. Would you like to share a few details of your schooling, how
you learned to adapt to the environment and friends, etc.
Yes. Initially school was only to have mechanisms to learn new
things. I used to play a lot. Having many good teachers really helped me very
much. They kindly treated me like my classmates. Yes. gave lot of encouragement
of course really giving me more confidence. It quite felt overwhelming during
games and appeared impossible many a time to manage lunch break too. Positively
managed only because my teachers and classmates helped me. Great amount of
socialisation is included in both situations. It can fester persisting anxiety
and sensory overload has truly dreadful consequences. Proving I understand lot
more than it appeared gave me the freedom to not be helpless most often totally
helping in adapting to situations in school. Special mention to my classmates
and teachers for all the special support for my schooling experience.
3. Please share a few details about your sensory world. What
helps you to calm down and relax?
Mostly progress from very happy state going on to becoming lost
minutes later.
Keep moving between diving into the water cold and the water
full hot. Leaves me totally in helpless position. Lot of sensory experiences
are painful.
Music only offers relaxation.
4. What is your all-time favourite and current favourite song
and movie/book? Please share a poem you wrote recently.
All-time favourite song
Bohemian Rhapsody by Queen
Current favourite songs
Higher power by Coldplay
Faded by Alan Walker
Waiting for Love by Avicii
Paradise by Coldplay
All-time favourite book
The Boy at the Back of the Class by Onjali Q. Rauf
Current
favourite book
The
Curious Incident of the Dog in the Night Time by Mark Haddon
Book reading presently
The Rosie Project by Graeme Simsion
Teens
Wills of sterling silver that greatly shine
Through experiences all not so fine.
Waiting in the shadows that cloud
The silence before adulthood is found.
Nothing possibly gives more confidence
Yet regularly exacts greater learning.
Interest amounts, heading off into silence
Meaning to life learned only in this testing time in life.
The sea of life, daring in that hindsight
Gathering strength until adulthood approaches life tomorrow bright.
Roads lay many, to take or to not to follow
Kindness perhaps lessens grave teen sorrow.
Understand the inner poetry of youth
Terms of interactions have passed on
Like homeless learning their truth
Parents treat your teens with plenty of love and care.
5. Please share a few details about your first annual day
participation in school. What did you perform? How did you feel?
That was perhaps one of my happiest experiences in school. I
took part in the Japanese lantern dance and had to go for practice daily to
learn to time my steps perfectly together both with the other dancers and the
music. Of course, it was panicky to have to do all this with sensorial overload
that is part of such school programs. Much of this was overcome with singular
effort from my teachers. The actual program really had me experience too much
of flood of sensations. Observing my dance part later felt very fascinated.
Like tango the lovely movements positively looked like flowing river. Possibly
my best dance performance to this day. Pleasing effort.
6. Please tell us about your passion for music. What instrument
do you play? When did you start learning to play?
Music is one of the things in life that makes it all worthwhile. Better friend one may never have. Time loses importance when music becomes bigger. I am happy listening to music night and day.
7. Please share a few details about the Spellibrity contest.
Important
milestone that helped me to really gather the confidence to engage with the
world on my terms. You are treated much more respectfully.
I liked the way they personified us into the different categories. I particularly liked my humanitarian label. Because it tells people absolute truth about me.
8. Do you remember the first word/sentence you communicated by
typing? How did it feel?
Yes
Only my name.
It felt great, touched my lonely being, completely liberating
mechanism.
9. Please share a few details about how your learning to
communicate progressed and what/who helped the most?
Priya
miss opened important doors for me. She freed me from the prison I was trapped
in - a silent totally lonely place.
Freedom to me means
To matter
To be looked as having value
To behave responsibly
To think without that fear
To live a life, I enjoy
10. You were close to your grandparents; how did you feel and
cope with their loss...
There happened
to not be anybody else that accepted my differences as my grandparents. There
clearly was an unspoken connection with them. Of course I felt very sad to lose
them. Many times, miss them. In my memories they stay with me always.
11. Would you like to share your future plans with us?
In the future my wish is to probably both learn and dance to music that is found only in math. My every effort to specifically be a voice for other non-speaking autistics always.
1 12. Would you like to share details about
your short story on inclusion.
The story was about standing up to bullying. Have not been bullied but
know very well how difficult and scary to be bullied can feel.
1 13. How was the experience of writing for the
book - Talking Fingers?
The full experience felt great mainly because of the opportunity to collaborate with my clan of non-speaking autistics from my country. People got to hear us. That gave me the motivation to push the body the maximum.
I hope you found the interview inspiring. To meet sixteen such amazing non-speaking Autistics, please buy our book. It is available on Amazon
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.
