Story of Robbie, by Cindy G.

Aaah the Jersey Shore! Fist pumping and Snookie Smoosh aside, the month of July has always been a great time when you live in New Jersey. I grew up a Jersey Girl and have fond childhood memories of  visits to the shore as a child.  Reading Meg’s blogs about exposing her feet at the beach made me face my own insecurities about my own body. But recently I took a trip to the Jersey Shore and felt completely confident. It had nothing to do with my appearance, but because I was able to measure how far I’ve come as a person. They say God doesn’t give you any more than you can handle. Well, I’ve handled a lot. But I am grateful for all of it, because it has shaped me into the strong woman I am today. Thank you, Meg for inviting me to write as a guest blogger. I am inspired by you, and your parents. I hope my story is an inspiration to other parents who are blessed to have special children, like my son.  

My son Robbie was born with severe Autism. When he was 2 ½ he had stopped speaking the few words he knew how to say. I took him to a Developmental Pediatrician who diagnosed him with PDD NOS “Pervasive Developmental Disorder, Not Otherwise Specified”, which over time that diagnosis would change to Autism. Back then the only thing I had ever seen of Autism was when I watched “St. Elsewhere” and one of the Doctor’s sons had Autism. I thought my son did not fit the description, and the Doctor had no idea what he was talking about. I had no idea what my life was going to become. When Robbie was 3 years old, my husband Robert and I took my twin girls who were 8 to the local firework. During the usual twilight time, we all sat chatting on the blanket, when suddenly I realized I had taken my eyes off Robbie for 2 seconds…and he was gone. “Where’s Robbie?!” I shouted in a panic. We all looked around and realized he was nowhere to be found. I quickly jumped up and looked around the entire field. Nothing. Robbie had a habit of running away. Whenever he knew I wasn’t looking he took off. Several times I had been in the bathroom in our apartment and I glanced out the window to see him running into the neighbor’s lawn. I knew his M.O. I also knew he was fascinated with water. When he was a toddler, if we were outside and there were rain puddles on the ground, he used to stick his head in the puddle, and then stand up and laugh as the water would drip down his face. I thought he was just quirky! My mind raced as I ran through the crowd, and past the local homes. I prayed “Please God, please let him be all right. Please don’t let anything happen to him. Please lead me to him. Please let me find him.” Knowing his fascination with water, and no fear of danger, I imagined he had either ran toward the Community pool next door, and ended up in the river running past it, or had run into the street. In my mind he was either in the river, dead, or the street, dead. I looked all around calling his name, all the while knowing he would not answer even if he heard me, because he could not speak. For some reason I ran through the parking lot toward the street first, probably figuring cars moved faster that water. As I got to the street and looked up and down, not finding him, I must have had a frantic look on my face because the police officer directing traffic asked if I needed help. I quickly told him what was going on and he asked me for a description of Robbie, blonde hair, blue eyes, blue shorts, red shirt. A 20 second exchange seemed to take 20 min. My son could have been drowning and every second mattered! He immediately got on his radio and alerted all police, fire and EMS workers. They were all in the area already, which is standard procedure for fireworks. I listened as he described my son and added “Please be advised, the boy is non-verbal and will not respond to his name.” I felt like I was in an episode of the Twilight Zone. I thanked him and ran back toward the parking lot, heading toward the pool.   The pool gate was closed thank God. I checked the river. Nothing. I ran back toward my blanket. It was now after 9:00 and getting dark. I knew the fireworks would be starting any minute, and between the dark and the explosive noise, it would become nearly impossible to find my precious little boy. I ran toward the ambulance near the football field and saw our friend Mary who was on the Volunteer Rescue Squad and she said “It’s OK, we found him!” Oh my God, I felt like I wanted to pass out! Apparently, he was walking around the middle of the football field when a squad member heard the police call over the radio, and walked over and took Robbie by the hand. I had the typical reaction of half wanting to scream at him for running away (which he wouldn’t have understood anyway) and half of scooping him up in my arms and hugging him so tight I never wanted to let go. After that experience, I learned to never take my eyes off that child for even one second! We had plenty of “Where’s Robbie?!” moments over the next few years enough to put plenty of gray hairs on my head! We learned to always keep all the doors bolted shut, and to never teach Robbie how to open locks, or un-do his seatbelt. We didn’t take family trips to the shore over night because I feared he would get out and head toward the ocean in the middle of the night. I had a friend who had a house right on the beach in Long Beach Island and we stayed with her a few times. Since Robbie never became potty trained and still wore a diaper, it was convenient to have a house on the beach so I could change him. Every time everyone was in the house though, I constantly made sure all the doors were locked. Every time someone went in or out, I immediately went right behind them to lock the screen door. When she sold that house, I didn’t go to the shore for a while. When Robbie was about 12, I took him for a day trip, and every time I turned my back, he got up and ran down the coast line, and I’d have to get up and chase him. He loved the water, but the waves scared him. So rather than go into the water, he liked to run back and forth, up and down the beach. I have taught aerobics for over 25 years, but when I go to the shore, I go to relax and read a book! This was not relaxing! So after a couple hours of chasing him, it became too exhausting, and we went home. That one trip was enough for one summer. The following year, I went to Ocean Grove with a friend. As soon as we got there, I walked straight over to the lifeguards up on their perch and stood Robbie in front of them. I made sure they got a good look at him, what he looked like, his bathing suit color, and explained he is Autistic. I said he doesn’t speak, and has a habit of running away, so I may need their assistance. Yes, with age was coming wisdom. I never needed them, because I never finished a conversation with my friend throughout the day. I just kept getting up and chasing him down, grabbing him by the arm, and returning him to his seat. My friend marveled at my endurance and stamina. I simply stated it’s just a normal day in my life! Chasing him was really not a problem. The fact that he was not potty trained at 13 years old was my real concern. If he decided to have a bowl movement in his bathing suit, I would really have my hands full trying to figure out how I was going to change him at the beach! This year, on July 5th  I took Robbie to the beach. He is 22 years old now. Since Robbie has moved into his group home 2 years ago, he has finally become somewhat potty trained! Hooray! He still wears a swim diaper, but we haven’t had any accidents at the beach. 5 years ago Robbie was also diagnosed with Charcot Marie Tooth Syndrome, which is similar to MS and affects his nerve endings and his feet. It’s not so easy for him to run anymore. He runs a short distance, but then he has to sit down. I have taught him to sit at the water’s edge, and he loves when the waves roll up over his legs. Yesterday, he sat next to me in a beach chair, for four whole hours! It was low tide all day, and Robbie was as calm and gentle as the sea. He giggled every time the waves rolled up, as I actually was able to sit in my chair and read my book. It seems as though the tide of my life has turned. Life is good. Or should I say, “Life’s a Beach.” Cindy’s video of Robbie on July 5th, 2012

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