The Good, the Bad, and the Ugly

TLDR: This article talks about some changes and struggles Suveer encountered this summer and how we both grew through them, scroll to the bottom to see a chart of our goals and actions we are taking to meet them.

Change is difficult but often necessary to help a person grow. One phrase that I can vouch for is this:

“Move out of your comfort zone. You can only grow if you are willing to feel awkward and uncomfortable when you try something new” - Brian Tracy.?

This summer, my brother Suveer and I were both pushed outside of our comfort zones but we both grew. For context or new readers, Suveer is my younger brother who got diagnosed with autism when he was 5 years old and is mostly non verbal with limited communication. We got hit with some big changes with the transition to summer and some of his supports fading away. I got a reality check the day he turned 18, learned what his favorite candy was, and am continually impressed by how much he adapts to the situations around him.?

Summer started with the school year ending and then speech and ABA therapy fading away for insurance reasons. I’ve been looking for more providers for ABA but as always that is a challenge and we are on a couple waitlists and hope to hear back in a month or two. On the brighter side of things, Suveer turned 18 this summer! Thankfully, we got guardianship over with earlier this year so nothing changed too drastically. However, I did realize what Suveer becoming a major truly meant on the day of his birthday. We went to the trampoline park and since he turned 18, he had to sign his own waiver as I was told by the staff there. I told them he cannot do that and they said I can fill it out and he can just touch to sign it. Filling out the waiver again was not a big deal, but it was enough to make me realize damn, my baby brother is 18?! Thankfully, Suveer was really patient and cooperative while I was filling the waiver and that made me very proud of him.

After checking in with Suveer’s social worker, we decided on some skills he should be working towards.?

1. Having a more defined routine everyday, so the personal attendant coming has a clear picture of what his average day looks like
2. Adding more community and social engagement for Suveer to help him get used to being out and about
3. Working on some at home skills to set him up to be a more self sufficient person?

The first goal was not too difficult since we already had a routine that was working for him. The only things I added to his schedule were slots for laundry days, some cleaning around the house, and social engagement. Once I added those blocks in, it was a matter of following the schedule and being accountable.?

I was fully prepared for a potential meltdown when we went to a coworkers son’s birthday party. But, Suveer surprised me. He did initially get upset because he saw a lot of new faces in an environment he was not familiar with. Mom and I walked him back to the car and they hung out there for a bit and we ordered food for Suveer. After the food came, we brought Suveer back inside and his face immediately lit up and he was very happy. He sat down and finished eating it and then continued to sit and be really cooperative. This was definitely a win for us. Second instance of community engagement was when I took Suveer to CVS with me to get him some tide pods to make laundry an easier task for him. I always get worried about him running across roads when we walk into stores so I tried to hold his hand, but he put it down and gave me a look that said “I’m a big kid now, don’t hold my hand and embarrass me,” and stuck close by. I told him you can get candy after we got the tide pods to thank him. First of all, his face was brimming with excitement when I told him he could get candy. And then he proceeded to do the most heartwarming thing ever. He reached for a fun size Twix bar when he was surrounded by huge chocolate bars and packs. I got another one for him and he put the one in his hand back because he thought he could only have one?! I smiled so wide and figured he deserved two and his when he saw two in my hand, his face glowed even more. He then patiently waited near the checkout because the self checkout kiosk errored out and we had to wait for a cashier to come help. That day, I learned Suveer has a favorite candy and that is Twix! But as always he will never say no to dessert of any kind.

Here is a picture of Suveer when we went out to eat for my coworkers son's birthday:

Another really notable positive instance that happened was his contextual use of words. Unless he really feels a strong emotion, whether it’s happy or angry, Suveer doesn’t use words contextually unless he’s prompted. He absolutely hates the sound of the blender in the kitchen and has his hands over his ears when he hears it. Sometimes he will even flap his hands to show how upset he is, if my mom doesn’t turn it off. One day though, he powered through listening to it and after my mom turned it off, he said loud and clear “thank you.”

One of the challenges we faced this summer was attempting to build relationships with support staff who did not really understand Suveer. One of his PA’s (personal attendant), was more used to being around communicative and expressive people. He believed Suveer understood all the directions he was giving and by not listening or following through with them, he assumed it was purposeful and disrespectful. It was a bit hard to answer the PA’s question of “how does Suveer communicate?” Because the real answer is…. he doesn’t or at least not in a definite way. We mostly understand what he wants or needs because of how long we’ve known him. Obviously this isn’t ideal but using communication devices has not been really helpful for us, and Suveer isn’t always vocal because he expects everyone around him to know and understand him as that is what he is used to. There was a lot of tension in the relationship between both of them and it was difficult to explain that my brother doesn’t really understand the concept of disrespect. Though to another person, what he does may be received as insulting, that is not his intention. Sometimes these types of events remind me how I need to be more conscious of how Suveer is, especially in public or with strangers. Regardless of his intentions, actions he takes can have unintended consequences if someone is not there to speak up for him. That’s why I do my best to assume no ill intent from peoples’ actions or words.?

I’m really impressed with Suveer’s growing maturity and am really excited at exploring more social activities with him. I’m looking forward to the next year, and hope to focus on vocational skills or mapping existing skills to possible vocations for Suveer to figure out what we will do next.