Autism changed me

The other day I was talking to a complete stranger at my son’s summer camp’s bus stop. We chatted like old friends meeting after years.There is something that bonds us all together…the experiences, the pain, the joy ,and the lessons. There is so much to share. We finally parted, promising a lunch date along with some spa time…knowing well, it was easier said than done 🙂
On my way back, I thought… I was never the kind of person to just approach someone and start talking. I preferred the comfort of familiarity. And today, here I was, chatting with someone I had never met and feeling the most at ease about it. It got me thinking – my son’s diagnosis of Autism has changed me as a person. It was time I gave Autism it’s due.

Strong and determined

I remember the days when I could never even say no , disagree or put up my point strongly – with conviction. I was mostly happy compromising so that everyone around me felt good.Fast forward to today. I’m my son’s advocate, his voice and his shadow.If I sit back and compromise , Vedant is not going to get his due. I had to stand up for him, at his IEP meetings, to his teachers, schools, therapists, doctors,local authorities, family, friends, strangers who wanted to judge him at a mall or a grocery store or a playground and anyone who comes between Vedant and his well being. Because of Autism, I am a stronger, more assertive person today who will not take no for an answer when it comes to her son. Autism has taught me to speak up and speak out for what is right , to have Vedant’s back all the time. It has made me extremely fierce and utterly determined.

The elusive patience

Let’s talk about patience. A bad hair day was never a problem for me. All I needed to do was pick up those pair of scissors and chop off the unruly lock and I was all set. I didn’t have the patience to see things through. I could not revise my papers for a test patiently, I would not do DIYs because you would need to be patient for stuff to stick, grow, dry etc. I just could not wait. Oh well… neither could my… son who decided to come 6 weeks early. He could not wait either .I guess it’s in the genes. However, Autism decided to fix things for me.I’m a more patient mom now. I wait for his meltdown to pass. I have been waiting for him to reciprocate a Hi. For the past 4 yrs I’ve been patiently trying to teach him the color red, and am still working on it. I’m still waiting for him…very patiently… to talk to me, to bring home a friend or to ask for a toy. I’ve learnt to wait, to be patient and to keep trying because if there is one thing that Autism teaches you, it’s endurance.

The glass is half full

Optimism comes with the territory. Actually you don’t have anything better to do except hope for the best. Not that I was a pessimist but now I’m an eternal optimist.I try a new treatment where all I’m doing is making him smell stuff and touch stuff in the hope that it’s going to change things.That’s how optimistic I’ve turned out to be now. You hope that one day it will all change, that one day that mysterious gate will unlock and your child will burst into the scene like James Bond or something.On a more serious note, optimism is what keeps me going because if I lose hope, I fail my son.
Show me a parent who is not resourceful and I’ll show you a child who will make them one.Every parent learns to find ways to make things work. It’s just that with Autism throwing in that extra challenge, I’ve learnt to use my imagination a little more and think out of the box more often. I think can pick a mundane object and make it a sensory toy, or turn an activity into an OT task. With my son’s limited ability to eat, I’ve become chef of sorts and can transform quite a few foods into a more compatible meal. I don’t claim to be a supermom but I think I’m getting the hang of it pretty well.

Today is a gift

When the future does not really hold as much promise as you had expected it to, the best thing is to not think too much about what lies ahead.Autism has taught me to live in the moment. I really don’t like to think far out into the future. It scares me. To think what would happen to my son after I’m gone, or to think if he would ever have a job, attend a college, graduate from high school, if he would ever get married, be able to speak and understand the ways of the world…it sucks the life out of me.I used to think about all these a lot. I used to cry a lot, worry a lot. Not any more. Not that often. I’ve chosen to enjoy what lies in front of me, take each day as it comes and celebrate the little things that Vedant is able to do and the little progress he makes. I live in the moment, for the moment, for Vedant. I try not to worry too much over things I cannot control.

No more judgments

Empathy…it’s a virtue we all pretend to have but not many actually possess it.I’m not claiming to be the “Angel of compassion” but my ability to connect with someone else’s pain has increased manifold. I don’t rush to judgment that often anymore. I try putting myself in other’s place and see things from a different perspective…I really do.This is a change I’m very proud of. I’ve been a victim so I cannot afford to be the culprit.When people judged my husband and me every time Vedant had a meltdown or a behavior, I know how it felt. You don’t walk around with a board on your forehead telling people your story. You shouldn’t have to. People are either supposed to understand , offer to help in some way or mind their own business. With my son’s Autism, I’ve found a better way to connect to others.

 

Those who are familiar with Autism know pretty well how much of a luxury a good night sleep is when you have a child with sleep problems.They say, successful people sleep less. Well, I’ve got the “sleep less” part mastered, now I’m just waiting to be successful 🙂 This apart, I believe, my son’s condition has made me a stronger, softer, and more confident individual. The changes did not happen overnight. My son and his Autism lead the way for me to be the person I was meant to be so that I could look Autism in the eye and tell it that I’m ready. We are ready.

23 thoughts on “Autism changed me

  1. Truly inspiring and challenging for all!!! proud of you dear Tulika to see the way you have grown and taken control of life.. Lots pf love and blessings to you, Vedant and the family. Believe that the sun will shine …

    1. Thank you so much Sr. Beena ! Your words are a huge encouragement for me.

  2. Tuli,
    Salute to your courage and perseverance . I can’t even begin to understand what you would have gone through and spirit which keeps you going forward! Loads of blessings to Ved and love to you!

    1. Thanks for you lovely comments Archana. It’s people like you around me who make it work 🙂

  3. Be optimistic Tulika, you know what Ved Is, but you don’t know what Ved can be…..

  4. “When the future does not really hold as much promise as you had expected it to……….”. You have put it so aptly. Unfortunately , I joined the club a year ago and so far it has drained me of my life . I was bawling after going through your musings. A mirror to my desperate attempts to understand why is life taking this turn. Thanks for sharing and hopefully it brings me closer to acceptance. It does require a lot of courage to accept the verdict and then to move on with your life. I am nowhere near anything at this point. But , thank you!!!

    1. Rangoli, I understand where you come from. I still feel that way every now and then. Everyone takes their own time making peace with their situation. You too will reach there, when you are ready. Hang in there.
      Thanks for visiting my blog. Please subscribe so that we can continue to be in touch. You can also find me on Facebook at https://www.facebook.com/braindroplets/ (the Facebook icon on top of the page should take you there).

  5. Thank you for writing this. It needed to be written. I think you speak for many parents, like me, who share your same thoughts. Bravo to you, your husband, and Vedant!

    1. Thanks for your encouraging words! I’m glad a lot of parents can relate to my post. Please remember to subscribe so that we can stay connected.

  6. Thanks for your encouragement. It summed up my story. Is their anyway to have a regular contact with you? Like a page etc.

    1. Thanks for reading my post! I’m glad it could connect with you. You can subscribe to my blog. The subscribe button is on the top right of my page. You ca also like and follow my Facebook page at https://www.facebook.com/braindroplets/
      Thanks again for you support and interest in my blog.

  7. Tulika, you are are great mom. Keep in fighting (and learning) I am learning right now from you. God bless.

    1. Thanks for your appreciation! We all have things we can teach each other 🙂

  8. I feel like you took these words right from my heart! I relate to you in so many ways. My son is almost 3 and 1/2 and is still non verbal. Thank you for writing this. When I read things like this I feel I’m not alone

  9. Great blog Tulika. You wrote what i experience everyday with my son.
    I have learnt to cherish every moment i live with my high functioning autistic child. He is everything i need. A life with a meaning to live.

    1. Thank you! If you subscribe to my blog you can get updates about any new article I post. I hope you would keep coming back to it.

    1. I’m glad you liked it. Thanks For reading. About sharing my thoughts on your website, you can always send me a message and we can take it from there 🙂

      1. Sure Ma’am,
        As you say, it’s indeed a pleasure to meet people like you who are working towards increasing the awareness about Autism.
        We will keep coming back for more.

        Best Wishes.

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