April brings Affection, Acceptance and Art

TLDR: This article talks about some changes Suveer went through and the progress he made, my experience of sharing my perspective with other caregivers, and happiness I found through sharing my love for art.

Happy Autism Acceptance Month! There’s been a lot going on in the past year with Suveer and I and we have so much to share! For people who absorb visuals better, here is a chart illustrating Suveer’s wins and outlining his future goals. 

During winter break, I connected with a couple colleagues who were both caregivers of a child with autism. It was nerve wracking but also really pleasant to share my perspective with them. One of the caregivers was visiting her brother from the U.K. and was considering moving to the US. We discussed insurance here and resources available to support her daughter in public school and how that compares to the U.K.  Her daughter loves watching videos on the laptop (very much like Suveer) and repetitively watching segments of a video. Verbally she knew how to communicate some of her needs but had goals to be more independent on her living skills.  Another colleague visited my house with his family and his 4 year old son is diagnosed with autism. This kid is almost like a little Einstein. He is hyperlexic, can recite the alphabet backwards at the same speed as forwards, and is super creative! He scripts and stims, and loves water just like Suveer. While everyone was talking, I asked if he wants to do a puzzle or something since I know he loves letters and puzzles. In fifteen minutes, he finished doing an entire alphabet puzzle, lined up from A to Z. I was amazed. The more people I meet, the more broad I realize the spectrum is and further believe every individual has their own set of battles to fight.

Suveer has really improved at contextually using words and phrases. For example, mom made biriyani one day and took out boxes to pack some for me and Suveer said “please stop” multiple times, indicating he knew boxes meant sharing food, and he did not want that. Then, when she asked him if he wanted some to eat, he very promptly and eagerly responded “yes”. He’s also been saying “let’s go” or “here we go” when he puts on nice clothes and knows we are going out. Suveer also did a great job of holding down the fort while mom and I went to India to visit my grandma. He got pretty close to our dog Tabby because we weren't around. Fun fact that is crucial to this next part of the story, he HATES sharing his fries. I got him McDonald’s one day after coming back from India and I was in pure shock as I watched what happened. He took a long fry, walked up to Tabby and hand fed her and smiled as he watched her eat it. I teared up and immediately hugged him because this meant so much to me. The most selfish man on earth (when it comes to food) was sharing his fries with our dog because he loved her and showed us his love in the cutest way possible. Below is a recent picture of Suveer (where we prompted Suveer) to share fries with Tabby.

I recently moved out of my parents house a couple months ago and now live about a 20 minutes drive away from home. I always used to think that Suveer won’t really miss me even if I move out as long as his routine is stable, but this is something I was very wrong about. We went out for lunch a couple weeks ago and mom told me Suveer kept looking behind their car to see if I was following them and coming home for the day. Whenever I am home, he makes it a point to sit next to me, gives me tons of forehead kisses and smiles so much at me. It’s a dose of happiness for him to see me and if I leave midday, he checks the garage, looks out the door and wonders when I’m coming back home. It’s hard not to feel guilty for moving out when I realize how much he misses me, but I’m really thankful I live a short drive away and can be home with him at any time. And think this every time I leave the house:

“The most important thing is, even when we're apart ... I'll always be with you ..." - Winnie the Pooh

Suveer has been enjoying socially going out so much that we have made it a regular habit. We try to go out to eat at least one a month and he’s been thriving and having a great experience regardless of the cuisine. He’s learning to be more quiet even if he is super excited when we sit down to eat and does a great job of following instructions. In addition to community engagement, he’s also been working on sorting nuts, bolts, and other hardware items in his therapy programs. We are trying to map that to a potential vocational skill. We will start exploring day training programs if possible and see if that’s something he would be interested in. 

I volunteer with an organization called Zenaviv (https://www.zenaviv.com/) whose mission is to empower artists with autism by providing them a platform to share their work. I started painting with Michael sometime in 2020 through Zenaviv's buddy program and I can't believe it's almost been 3 years since we've met. Last week, Michael's mom Jean, reached out to invite me to an art exhibition that would display his paintings at Freddie Mac in Tysons and I was so thrilled to be able to go! Meeting Michael and his family in person and watching his art be appreciated and celebrated truly made me feel so thankful to be part of something so special. One of his paintings (pictured below) that will be available for display in the Freddie Mac office was inspired by a card he made for me to congratulate me on moving out!  

This April, I celebrate Suveer's and mines acceptance and adaptability to change. I celebrate his affection for family and how he shows it. And I celebrate how art has a beautiful way of bringing people together. I will be writing more frequently this year and hope to share some personal caregiver insights in the next blog!