Autism Stinks!

Autism Speaks…No, It Stinks!

  Well, I openly and freely admit that I am jealous of parents with neurotypical kids. There, I said it. This special needs parenting gig is not for the faint of heart. We are heading into new territory as my oldest is getting older (10 this week!). I can no longer protect him from some struggles. I want to give him some more freedom, but with that, comes the opportunity to get hurt.

   We recently returned from one of our favorite spots- Great Wolf Lodge.  We stayed for two nights. It was far pricier than I remembered. I broke down and let the kids play in the arcade which increases the spending about 10-fold. Anyway, we were there to celebrate two birthdays.  My oldest son is turning 10, and the little girl just turned 7. Both of them have some significant special needs. He has autism, and she has multiple disabilities. You can see my previous blog posts about her needs.  

   My youngest son, who is only 6, was the salesman that convinced us that a quick getaway to GWL was a great way to celebrate birthdays. He is sweet. He came in to the office and said that I had been working way too hard (true story) and needed to take time off. He reminded me that he and his siblings are more important than work -also true! He then said that a trip to Great Wolf Lodge would be the perfect way to celebrate birthdays. I agreed and made the reservations. We have been there before and know that it can be loud and crowded. We opted for a midweek visit to avoid the crowds as best we could.

  A night or two before we left I had delusions of grandeur. Kids playing happily in the pools, frolicking about in the wave pool. I dreamt that they all chose to be in the same area of the park so that we were able to stay together as a family. I imagined they would all be brave enough to try the climbing wall and would love it. I hoped for a ride on the lazy river where I really could be lazy. I imagined a seamless bedtime experience and everyone waking up without a hitch. My batting average for that picture of things was…well…zero.

  When we arrived, we had the usual 1,000 questions from the little girl. She has been to GWL once before, so this is not all new to her. She was ready to get to the water before we were checked in.  She is our fish. Too much of a fish. More on that later. I noticed families with multiple kids who were paying attention and standing close to their parents. Not my kids. Todd was parking the car, and I was plotting how to chase our girl while keeping an eye on our pile of luggage and my purse. I opted for the wrist hold. She hates it. I must keep ahold of her somehow. Her hands are always so sweaty that it is impossible to hang on to them if she decides something else is more exciting than mom. She is doing much better with the bolting, but when things are so exciting it is hard for her to stay in one place.

  Our first day in the water park was ok. We had to divide and conquer. One of us had to stay with the girly while the other went with the boys. She is unhappy doing anything for more than two minutes at one time. We both tried to get her to stay in one part of the park for more than a couple of minutes to ward off exhaustion from chasing her around. She had a rough time walking, not running. That resulted in a fair number of minutes in time-out.  We endured quite a few embarrassing moments because she has absolutely no spatial awareness. She plowed through people knocking anyone in her way aside. She threw herself into the water, face first, splashing everyone within 5 feet of her. I liked having her in the little kid areas because I could stand or sit in one spot and watch her play for a couple of minutes at a time. The problem is that she rushes off to go down a slide or play in a splash zone without any concern for who she runs into on the way there.

    I was sitting about 5 feet from one mom who was just hanging out watching her kids play. She was relatively dry and seemed pretty happy that way! Until…my girl rushes over to me with her goggles half-full of water, eyes blinking rapidly, arms flailing. She is yelling that she is going down the slide one more time. I tell her that is just fine and to please – really please –  just go slowly. She turns from me and slams herself face first into the water. She soaks the lady sitting nearby who immediately yells at me. I try to explain that my girl has multiple disabilities and just isn’t aware of her surroundings. That explanation fell on deaf ears. She was certain my child was just a poorly behaved monster kid. On occasion, I almost agree.

    I observed the other kids splashing indiscriminately and realized that they were two years old and younger. Jealousy bubbled up in my heart. I saw the other parents relaxing while their kids are playing. They had their feet up, drink in one hand. They smiled at the kids and chatted freely with friends. I was running around like a chicken with my head cut-off and apologizing as I went.  I desperately wanted to put my feet up (my feet are still healing from plantar fasciitis that cropped up when the little lady first moved in with us). I feel like I am always trying to anticipate the next struggle, the next interaction, the next move she is about to make.

    The second day in the park broke my heart. We were all in the lazy river. I had just hopped on a tube and started to feel myself relax. Todd was on the other side of the river, trying to catch-up with the boys. The girl was with me. The boys were ahead of me by about 30 feet. I was passed by a lady and her son who shoved by us and didn’t even say, “excuse me.” I thought she was rude and the kid was obnoxious. It was a snap judgment. I was watching the boys ahead of me. They were talking and smiling. Then, the obnoxious kid got right up to them and started pushing them. My oldest did not know what to do. The mean boy started splashing him in the face while his mom just watched. I got off the tube and started running through the water dragging my daughter along as fast as I could. I could see it all in slow motion, escalating. I felt helpless. I wanted to get in between that boy and my son. I just wanted to protect him. I wasn’t fast enough. I could see things getting ugly. I yelled at the boy. I yelled at the lifeguard. I saw my son trying to push the boy away. The boy was trying to hit him. My big boy punched him in the gut and tried to get away. I finally got to him. I yelled at the mom to get her kid away from mine. My boy’s face was contorted with fear and anger. He was scared and looking for Todd and me.

     My big boy was in full melt down mode. We were standing in the water and all I could do was hold him. He was crying. He was shaking with anger. He wanted to kick that boy’s butt. I didn’t blame him one bit, but that certainly wasn’t a good solution. The lifeguard was apologizing for not intervening fast enough. They had us go to a spot on the side of the park and talk to the manager. He apologized and gave us a coupon for some ice cream. My son, so wise, said that ice cream did not help him feel less angry. The management was not at fault. The boy who was bullying my son was at fault. His mom’s lack of supervision, or whatever, was part of the problem.

   This is where I say Autism stinks. A neurotypical child may have just blown this off, said that the other boy was just a jerk, and continued with their day. Not my little guy. This incident became all-consuming. We stood at the side of the park for a long time. People staring. He cried. He raged. He shook with anger. He could not process why someone would treat him that way. He has such an innocence about him.  In his concrete world, people are supposed to be good to each other and follow the rules. This act of bullying just did not compute. There was no reason for it to have happened. My boy could not understand that someone could be unkind for no apparent reason.  He just couldn’t let it go. He immediately wanted to leave the water park and hunker down in our room. I gently guided him to the snack bar. I spoke in a whisper letting him know that he was safe and loved. We got something to drink and warmed up in a towel for a few minutes. He eventually regained a bit of calm. We resumed our day, but that incident continued to haunt him. He was upset and continued to talk about the boy. I tried to redirect his thoughts to fun things. I tried to get him to think happy thoughts. We just marched through the day the best we could. He was better when we got out of the water.

   I continued to observe parents with their children. I saw several other children with autism. I can easily spot a spectrum kid -the vocalizations, the obsessions, the meltdowns, the stimming, the I-pad. I see myself in their parents’ faces. The love for the child is first, the stress is evident in each line on their faces. I can see the look. The  “please don’t meltdown so hard you hurt yourself” look is painfully familiar. I also recognized the “please don’t think my kid is an undisciplined, out of control jerk” face. I have had that expression so many times I can’t even put a number on it. I don’t want people to think negatively of my children because their disability makes it hard for them to function in everyday life – or a waterpark.

   I want people to see how beautiful and valuable my kids are despite their differences. I want the world to be kind to my kids, to care for them and not hurt them. I want my kids to experience happiness, peace and love. I want them to feel calm in their own skin.

   I want to let go of the jealousy that I have in my heart. I long for parenting to be easy, but it isn’t for any parent, even parents of kids without disabilities. It is my heart issue that needs fixing. I so desperately want my kids to be ok. I want to have some assurance that after I am dead and gone, they will be ok. That is every parent’s dream, isn’t it?

   So, the lesson here? Live every moment as best we can. Enjoy the time that we have. Love fully. Prepare the kids as best we can. Plan to the best of our ability. Have faith in God- knowing that His ways are best.

   In honor of Autism Awareness Day, I just want to say that my spectrum kids are amazing. They have such an amazing capacity to love. Their perspective on life is unusual. It is not the “norm.” They expect people to be at their best. I love that. My hope is that they continue to grow, love and experience the best that life has to offer.

   Have a good night everyone!