“Someone wants to be just like you. Don’t let them down.”
Mikey is just a little more than a year older than Gustavo. They’ve alternated as tallest between the both of them for several years now. A few days ago, one became even taller than dear old dad. My husband still denies it and blames it on Mikey’s thick head of hair.
Mikey is on the left. Gustavo is his little brother and I believe his desire to protect and help him would have been there no matter what. Because they are so close in age, Mikey doesn’t have memories of a life before his younger brother was around. He doesn’t remember the times we talked about autism in hushed tones because we didn’t know what it meant or how to respond to people who gave him that look when he was behaving differently.
Yes, some brothers are close. Mikey turns 18 soon and will be an official adult. I have a feeling that no matter the age, he will always have the friendship and love of a younger brother he kept close under his wings.
Crinkled pages that might have been tossed away by an untrained eye are kept safe. Life painted and told in the beautiful song of his first language. Some speak with words. He has trained the swirl of the sounds and whispers he first heard as he slept between two worlds in the safety of my belly. They cover pages with words from the heart. They bring laughter with their unfiltered look. He has a gift. He could just tell us but this will do just fine. Fine for now. Fine forever.
We recently celebrated Gustavo’s 16th birthday. He’s more than just a little taller than me— it still seems impossible but you can’t deny the pictures.
When I first found out Gustavo had autism I was given the phone number to a program called Parent to Parent. I never called. Thankfully they were persistent and knew something I did not. I needed to talk. I had questions that the doctor could not answer. Some questions no one could answer. I wondered if I had done something wrong while pregnant. I spent hours thinking about what I might have eaten or drank that could have caused autism. There is a story on this blog that tells more about those early days– Autism Tales: He Gets It From Me.
Parent to Parent is a program that connects parents of children with special needs with parents of newly diagnosed children with special needs. In the reading material Jennifer, my helping parent had left me I found this story on brightly colored paper. I keep a copy folded in my wallet.
Here is what Emily Kingsley and Jennifer gave to me.
Welcome to Holland: I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
I didn’t expect to have a conversation with Gustavo that would change the way we talked to each other forever– at least the way I listened.
Thank you for following our story at 4utu.wordpress.com. We are coming up on a year of blogging!
I knew the words were in him. Hearing the details of your loved one’s day is one of those treasures taken for granted. Gustavo was an excellent reader. I loved hearing him read. He pronounced words slightly off but hearing him speak in complete sentences were precious moments. I would buy books he even hinted he might be interested in. He knew they were more for me than him.
I grabbed a piece of paper from a notebook in his backpack. I wrote down a sentence and slid the paper over to him. He picked up the pencil and neatly wrote the date on the page and then slid it back to me.
“Dear Gustavo, How was your day at school?”
“June 6, 2004”
“Dear Estela, I had apple juice. The money.”
That was the beginning of the after school letters that helped me tell my son I loved him…
In July 2014, an Ice Bucket challenge video was uploaded to YouTube that was in essence a triple dog dare between cousins for a good cause. The Ice Bucket challenge wasn’t new but it had never picked up as much speed and unified so many around a single cause so quickly. People were being doused with ice way before the ALS Ice Bucket challenge, but thank goodness for the cousins- pledges to support finding a cure for ALS are $15.6 million to date. News headlines sole purpose in life is to grab your attention. When the news has to share space on your computer screen with promises of the lowest mortgage rates in years and something called a vine with a cat that is helping a mouse with the ice bucket challenge, shock value is a must. When I read, “Teens admit to dumping urine on boy with autism in ‘Ice Bucket’ attack” I could feel my cheeks redden and the Garay-Segovia in me quickly stepped in. This happens– kind of like a split personality but not as crazy. The Garay-Segovia in me will be at attention in me when subconsciously my mind knows the new Estela Caballero I have developed into might not be tough enough to handle something. I can’t bring myself to watch it. A friend told me about it– he knows I have a son with autism and expressed how his thoughts turned to our family when he heard what these teenagers had done to a schoolmate with autism.
The newspapers used words like ‘bullying”, “disorderly conduct” and “prank” when they reported the story. Here’s what happened, in early September five teenagers challenged someone to take the ice bucket challenge. Helping other feels good and when it can be turned into something fun, that’s when magic happens. I have watched many of the Ice Bucket challenges and see how it’s about so much more than raising awareness and even bigger than how much money is raised. At the heart of our actions is heart. The five teenagers didn’t have helping anyone in mind. They did something awful. They used all the goodness that had been built with the Ice Bucket ALS challenge to lure a boy with autism to their house. The news account of how this one bad experience played out from start to finish is painful to read. They had time to rethink their choices at so many points. They took turns peeing into a bucket. They spit into a bucket and then they chewed tobacco and spit it into the same bucket– all in preparation for the boy. The boy who could have been my boy. The boy who takes people at their word. He is trusting. They had him strip down to shorts and got out a camera to video take what they had worked so hard to prepare for. Prank, misconduct and even bullying don’t begin to describe their actions. They orchestrated a crime in my mind. I hope the shame sticks with them the rest of their lives and it changes the path they are on. Is this really who each of these boys are? Even if these young men never make another mistake or poor choice in their life, nothing can undo their choice on that day. Unfortunately, this is how they will be remembered for a long time.
Any kind of sports game playing on the tv is rare in our home. I like UFC, especially when Ronda Rousey and Miesha Tate were coaches and would tune in for that. I even rented the pay per view to see the showdown between the two. I used to love boxing too but after Julio Cesar Chavez retired, it just wasn’t the same.
Gustavo has developed an affinity for futbol. Something about the world cup captured us. I like watching the matches and at times am fascinated by the fans more than the actual game, including my husband and Gustavo. This is the first year Gustavo actually sat down to watch a match. Everytime Team USA missed a goal, Gustavo would sadly say, “Oh no, the United States is lost the game.” I was intrigued. When had my son become a futbol fan? Excited at the possibilities of this new interest. I asked, “Gustavo, do you like futbol?” No answer. He sipped his Snapple and went to the pantry for a Gansito. He ran so fast back to the living room at the sound of the announcer and trademark cry when a team makes a goal. Maybe it was the commentator that had initially drawn him in. We took him to an auction once. Every few months, my husband and I attend an auction of surplus things from the government and estates. It’s about an hour from home and in a bigger town than the little place we live. “We can take the kids to the park by the river after,” I told my husband, “I think they would like that. We can go eat at the buffet after.”
We had been to the auction at this location several times. I was worried about how Gustavo would do with all the people and sounds. Sometimes the microphone squealed as the auctioneer called for bids. I never understand much of it except for the dollar amount– even then, I couldn’t be sure if the amount referred to the last bid he acknowledged or the bid he was hoping to hook the next attendee with. There was an area people could sit away from the main crowd. We settled in upstairs in the less busy balcony area. Gustavo loved it.
Thinking ahead about sounds is something our family had to learn about. Any place with balloons is not a great choice, this would include graduations. Something we didn’t discover until Vanessa’s high school graduation. We had to take turns standing outside the gates with Gustavo during the ceremony. We had no idea he would have such a bad reaction to the balloons. We had been around them before.
It’s great to find fun sounds we never would have thought he would enjoy. They usually lead to some other interesting discoveries that have nothing to do with autism. I have watched several games since the USA tied that match. Tonight we watched as Mexico lost. Gustavo had long went to bed. It was just my husband and I. There was a passionate futbol fan hidden in me all along!