This weekend my family had an amazing opportunity to travel north from Cincinnati to Toledo to meet up with two other families who have children with 15q24 microdeletion syndrome. We met on Facebook in a closed group with several other families as well.
We drove on Friday night and stayed at the Holiday Inn Express in Maumee where we were able to play in the water park there for most of the night. Back in the hotel room after the water park I spent hours trying to contain Carson. Having sensory issues made for a long night of crying and him trying to escape. We told him we were going to bed and he laid in front of the door to the hallway waiting for us to leave. The deadbolt on the door unlocks when you turn the handle from the inside so we were dependent on the slide arm to keep him in. Needless to say I was very tired Saturday morning.
We drove from Maumee to Toledo and had lunch at Tony Packo's. Klinger from M*A*S*H* was from Toledo and always talked about wanting a hot dog from there. We sat and talked and watched as our "typical" bonded and got to know each other. At one point I had Carson reach out and touch one of the other boys because this was probably a once in a lifetime event. It was so surreal. To be in a room with two other children when only about 30 in the world have been diagnosed. Carson was the 9th. I can't imagine what it would be like to be the first or the second and to have no compass or direction or an idea of where to turn.
We left Tony Packo's and made a caravan to the Toledo Zoo. We walked around and talked and bonded and got to know each other. One child is very quiet, stoic and kept to himself while the other was talkative and outgoing. Energy for days. Diagnosed with autism first he was so far beyond Carson. He would follow directions and could walk alone. If that were Carson he would've been off on his own staggering adventure without listening or caring if he would or could get hurt. At one point Mike had both non-verbal boys laughing so hard. It was great to see. It made my heart so much bigger. I love these people and their children. We may not be blood related but we're family. If not a family-we are an army. An army of people who just want the best for their children whatever that may be.
We sat and talked and took pictures. We closed the zoo down. Amazing that I live 30 minutes from a zoo that ranks in the top 10 in the country, one that can boast about having the greenest restaurant in America none the less and I've never been there more than a couple of hours at a time let alone close it down. I think it was lucky of us to have parked in the very last spots of the farthest parking lot. It gave us just a little more time. I thought that it would be sad. I thought that I would cry. I thought and I was wrong. I walked away with a feeling of fulfillment. Having a child with any type of disability makes you feel like there's you and then there's everyone else. This was moms and dads and sibling all looking at each other with an understanding and a promise to do this again next summer.
We then drove a few miles into Michigan. Something I figured we should do since we were so close. We drove to Luna Pier where we hit a gas station for chips and drinks and then headed back to Maumee. It had been such a long day Carson didn't want to play at the water park so Mike just held him while Baylee and I had fun for a bit just us girls. Back in the room it was the same overwhelming screaming and crying as the night before. Thankfully from the lack of sleep and the excitement of the day Carson fell asleep relatively quickly and I was soon to follow.
We drove the 3+ hours home this morning. Stopping only once at my mom's to pick up Baylee's rabbit. Now home we are enjoying being back in our own environment. A place where Carson feels safe and comfortable. He is happy and eating and back to his own routine. I have learned the hard way this weekend that long trips with him are probably going to be impossible. We went to Disney in 2010 for a week and stayed in a condo. He was only 2 at the time, still undiagnosed and we didn't know at the time that the sensory issues were the reason for the crying and the standing on his head. Or maybe we knew we just didn't understand what his triggers were. Either way, I don't think it will be fair to him to try to "make" him understand why we aren't going home to go to bed.
So tonight we sleep in our own beds. Tomorrow back to a routine he understands. We are learning as we go. It may have been rough but it was completely worth it.
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