Sometimes you find something you forgot you were looking for.
This was the case today. My wife, son and I went down to Rehoboth Beach. Our destinations: Funland and some of the arcades. Just a loose, carefree trip with no hassles and no issues. As many who read this blog already know, I have a son with disabilities. Multiple disabilities. His main disability is Tourette Syndrome, but with that comes a host of comorbidities. Those include Attention Deficit Hyperactivity Disorder, Obsessive-Compulsive Disorder, and Sensory Processing Disorder. Sometimes they all collide at once and it results in an untenable situation.
This happened today. When we got there, we got some Grotto’s Pizza and walked down to Funland. My wife and son went on the pirate ship dragon ride and then we did the bumper cars. After, my wife wanted to chill on the beach for a bit so I brought my son to the arcade. You know those grappling hook games that usually cost a dollar? The ones where you have to position the hook over something, the hook drops down, and if you are very lucky it will grab the prize you wanted and you get it. I gave my son some money and watched him do his thing. Yes, I know these games are a big scam, and I tell him every time we go. He knows it before and after, but when he is playing it this seems to escape his memory. In a sense, it is like gambling.
I watched him getting frustrated after the third or fourth attempt and I told him he may want to give up. I got “the look” and was told to go away. Sometimes you have to learn lessons and this was obviously one of those times. It’s happened before with a simple shrug and then he gets over it. Keep in mind, there are tons of people in there and sounds coming from all the different machines. After he had been on two amusement park rides with thousands of people all around us. The overwhelming smell of different foods and the sea salt smell coming up from the ocean, the sounds of people laughing, talking, crying, the sights of flashing lights in the arcade, bumper cars coming at him, the slight ugh feeling from the pirate ride, and severe frustration building up from the rigged grappling hook games. I advised him he didn’t have too much money left and he might want to save it for something else. This is when his Obsessive-Compulsive Disorder kicked in. He had to beat this game of rigged chance no matter what. It was all-consuming to him. After he blew his money he became very upset.
I told him I would talk to the manager about the hook did grab three things on three different games only to release the object of his choice and drop it in stunning defeat. The manager said that is just how the games are set up but people do win prizes at times. I knew this. But I had to make sure my son knew it. He was allowed to spend x amount of money and that was it. He blew it in ten minutes. Like I said, these things happened before, but today was just the perfect storm of whatever was bubbling up inside him heading up to the surface at lightning speed. I called my wife and asked her to come up from the beach. She came up and we tried to console my son. We could have given him a million dollars right then and there and it wouldn’t have mattered. Words were said, and we were all upset. People were looking at us. This happens with children with disabilities. For us, this is normal. For those watching who don’t have children with special needs it is like watching the worst dysfunctional family ever. I’ve grown immune to this over the years and I don’t let it bother me. They haven’t walked in our shoes, so they just don’t know.
I decided to get something to drink. If there is one thing I’ve learned over the years, it is this: when both my wife and I try to help him, it seems to him like two against one. One of us had to walk away. That was me. I came back and I took over. My wife went back to the beach and my son and I sat there for about ten minutes. Not speaking to each other because I knew he needed his space. We got away from the crowds to a quieter area. All of a sudden, he got up and just wanted to walk. Sometimes the best way to get out of a storm is to walk away from it. We checked out some of the shops on Main Street. Tons of stores all around. He was looking at phone cases in one store. One of them had a buy one get one free sale. He called my wife who was able to find her serenity watching the waves come in from the Atlantic Ocean.
We stopped by Snyder’s Candy Store. He actually had a lot of fun in there. They had Pez dispenser collections with sets of four Presidents in them going all the way back to Franklin Delano Roosevelt. There were action figures and candy-flavored crickets and all sorts of funny distractions for him in there. The store was empty aside from us and the three workers. My son found a little canister of “thinking putty” and asked if he could get it. We have given him putty to use when he gets stressed out at times and it usually does the trick for him. I said okay but he was still looking around. I was looking at some of the different candies the store was selling.
Flashback to 1997. At the time, I was living in Sweden. That winter, I was in a candy store and they had these chocolate candies called chocolate rum balls. It was a ball of chocolate with rum mixed in with chocolate sprinkles around it. During the next five months I lived outside of Stockholm, I would frequently visit this store and get bags of these chocolate rum balls. When I moved back to America, I couldn’t find them anywhere. When I went back to visit some friends in Sweden in 1999, I brought a whole bunch back with me. Ever since then, if I happened to be in a candy store, I would sometimes ask “Do you have chocolate rum balls?” “Sorry, we don’t.” After years, I just kind of gave up.
At Snyder’s Candy Store, I asked the cashier if he had these. I think he thought I meant actual liquid rum was inside of them and he said they didn’t have them. As I was paying for my son’s thinking putty, on the top shelf of the chocolates right next to the cash register they were there. I yelled out “Oh my God, they have them!” My son jumped back at his Dad’s weird moment of excitement. I bought a quarter pound of them which gave me about fifteen of them.
My wife called and she was getting something to eat at a Mediterranean restaurant so my son and I walked back to meet her. We were all fine again. A happy family. He had his thinking putty, my wife had this dish she raves about every time we go to Rehoboth, and I had my chocolate rum balls I was looking for the past seventeen years. Of course, the moment when only a 12 year old could give when telling my wife what I was eating with his silly grin didn’t escape me. I offered some to him, but I think he thought his dad was a very odd man at this point and said no. I savored every single one of those chocolate rum balls. The taste brought back the memories of a 27 year old young man in a foreign country who missed home and knew he would be heading back at some point in the future. I knew the language enough to get by and I had friends there, but it never felt like home. In the winter, it could get very lonely with only a few hours of sunlight. In the summer, I would frequently wake up at 2am in the morning as the sun came blazing in the window. The circumstances that led me to Sweden were long and varied, but those circumstances were changing. It was hard to leave, but it would have been harder to stay.
But I always missed those damn chocolate rum balls that were as elusive as a shooting star on a cloudy night. I wasn’t meant to stay away from circumstances which led me to where I am now. If it meant not eating chocolate rum balls for seventeen years, that was what had to be. Life had an unexpected journey waiting in the wings and I had no clue about any of it.
Today, my long search ended. I was able to taste memories long since forgotten. Today was a day of senses for my entire family. Sometimes they got to us, and other times they provided us comfort and strength. Life isn’t perfect. It never was and it never will be. There will always be hurdles. I accept that. I have learned, and continue to learn, when my son needs my wife or I and when he just needs to work it out himself. Sometimes I stumble with this reality. Sometimes my patience is stretched to its limit and I lose my cool. We all do this. We all have our inner coping mechanisms that allow us to ride out any storms life throws at us. Sometimes it is thinking putty. And sometimes it is chocolate rum balls.
As we drove back from the beach, I found myself lost in thought. Just staring at the setting sun and seeing the beautiful farms of Delaware all around me. My son was asleep in the back seat and my wife had headphones on listening to music. It was quiet. Serene. I wouldn’t trade today for anything. Spending quality time with my wife and son, for all the angst in the beginning, was worth it. Sometimes, when they don’t know it, I just look at them both and feel nothing but love. These two people who God sent into my life. The woman I love so much and the son I am meant to teach, guide, and love as long as I am able to. God threw an extra piece in with his disabilities. I don’t write much about the daily situations that manifest as a result of those disabilities. But they happen. It is as much a part of my life as anything else. I could complain about how tough it is, but that doesn’t help my son. I can try to mitigate situations the best I can, for him and others. Which always leads me back to here.
He is why I fight. Him, and every child like him. The adults can bicker and make their silly rules, but I can clearly see that what matters most is the kids. The ones who don’t always have someone looking out for their best interests. The ones who don’t know half the crazy battles us adults play on their behalf. The ones who are shut out of those conversations. The ones who don’t get to decide where the money goes. But these decisions affect their lives and play into their education. Every subject I write about on here, I question if the things I find are good for kids. Sadly, the answer is no most of the time. This causes me to get in tug-of-war fights all the time. Even my allies question what I do sometimes. Some people think I’m crazy doing what I do. Let them. It’s not about them and it never was.
Today was just another walk on my journey through life. It was a special day, with highs and lows, just like any other day. Little victories to be won and moments to deal with. But I have to think I was being told something today. That at the moments when giving up seems like the best thing, and all you want to do is ask why, that I have to get past that and ask God to help my son instead of me. He answered my prayers. And I got a little extra something in the bargain!
It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again
-The Foo Fighters
6 thoughts on “The Search Is Over”
For me, …it was lamb cheese…… (You are more normal than you realize)… 🙂
Thanks Kevin. Yes, this is not just your story of a day in the life but our story, the story of the special needs parent. You keep doing what you are doing and know that many of us are with you. We have to be. Because like you said its about the kids whose lives are affected by the decisions adults make. Thank you.
David, thank you. I too have a disabled daughter. She is grown and living in an apartment with Connection’s help. Even though she is able to live alone, we often have daily interactions that are hard, but I would not trade her for all the rice in China.
I am an educator. I worked in the private sector for a while, then I homeschooled my daughter and others. Now I am tutoring. The Country’s education system is failing many of our children. I would like to become more involved, but am not sure where to begin. Do you have any suggestions for me?
Beautiful, Kevin. Brought back a lifelong memory
This is a beautifully told story! You had as many experiences in one day as most people have in a week. In the end, the good far outweighs the bad. Your knowledge and acceptance of that is amazing!