Thought battle – Winning Smile

priya

Its been a long time since I wrote. Something happened yesterday that I wanted to bring back to my thinking pad. This has been a place of thinking and talking whenever I have an ‘aha’ moment or whenever I have to work through something.

For the first time, we let our son V participate in choir. He loves music, listens to something all the time, Alexa is his new best friend, and he also has a decent voice. Choir had around 70 kids and we were doubtful but the program director agreed to have an aide support him. So, we went ahead.

Yesterday was the performance day. As the kids gathered, my tummy was already going into knots. He came in with his costume which coordinated with a group of kids who were all part of one mini skit. The whole show was a combination of multiple mini skits with kids doing talking parts and then kids going back to their place in bleachers to sing songs together.

He had an extra vest on the shirt as the shirt had fuzzy things in the front and I can see why the aide thought it was a good idea to put a vest on. He also had a special necklace and sunglasses.

My brain started going into thinking, story telling mode just seeing him walk onto the stage in his kind of ‘same but different in some ways’ outfit. My brain was spinning stories of how my baby is different in anything we do, he can never be like others, why did they not leave his outfit to match other kids? If you are a parent of a special needs child I am sure you have these thoughts spin in your head if you give it a choice.

V came in and I don’t think I was aware enough because the thoughts just started flooding. The program started and kids started singing. V stood up for a second, sang a word or maybe a couple, then sat in his chair.

As the program went on the stories in my head became bigger and sadder. ‘Why do we even have to do this?’ ‘Why do we try to fit it?’ ‘Why did I not try harder to make sure he can do this?’ ‘I long for him to be able to dance like other kids,’ and ‘I wish he was just normal.’

I was taken by surprise by these thoughts. I was under the impression that I had moved on from these things. I thought I was no longer looking for my kid to be normal.

Whenever there was a mini skit performed, my thoughts would stop as the kids were all sitting on the bleachers. At this point V was not the only one sitting. I used these mini thought breaks to problem solve and make an argument with my thoughts.

I would be like its OK, not all kids are dancing the same way. Its OK, some kids are not able to sit and there are other kids fidgeting too And, he was at least able to participate. This is such a loud place and he is still doing well. And finally, its OK, he is too cute and that’s all that matters!

Some negative thought would come and I would go in and find something positive about it.

I wanted to write this because a lot of times this is the reality of special needs parenting. You try so hard to stay positive because you know that staying in ‘negativity’ is not going to help you or your child but…staying positive takes practice and hard work.

Then something happened that gave me freedom from my thought battle for the day. V smiled and sang a part of one song and danced. It was very clear he loved that particular song!

Somehow, that was the much needed peace maker for my thought battle. I snapped out of it. In the end all that matters is that he is happy and everything else in the background dims out.

As I sat back after taking some pictures all of a sudden I was able to see and feel something that was amazingly refreshing. I saw my baby totally rocking the necklace and the vest and having fun standing out.

At that moment it all felt OK. Really OK. Not like the OK I was telling myself initially. This was OK from within.

I am totally OK with my son standing out.

V’s smile pulled my heart strings ultimately, switching off my thought spinning, argument making brain.

I was able to be in a calm place by the end of the show and plan for the next time. I will keep looking for ways to improve on this performance. While working on progress for him I guess I will continue to work on me too!

Written by, Priya Jai

My name is Priya. I am mom of two amazing boys both on the spectrum. Hubby and me are raising our boys in Austin, Tx. We are an Indian(Asian) American family, with two special needs children. My life since 2006 has been defined by this. Writing has been my thing to work through things. You can follow their journey at Journey Through the Spectrum.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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