99 Tokens: The Sequel

For those of you who have read prior posts, you may remember a story I wrote last year about my daughter having a meltdown at Chuck E. Cheese after telling me that she was finally ready to go there. However, she didn’t last more than ten minutes before having a full blown sensory meltdown that caused us to leave. It was one of the many “a-ha” moments I have had as a sensory parent..those moments that make me realize that this disorder she has will never go away. Foolishly, I led myself to believe that she was finally free of this sensory world that limits her from so much. I was in so much denial that I bought 100 tokens when we got there only to have her crumble after using only one. So, as a reminder of our daily struggle with SPD, I held on to those 99 tokens we had left. It has been a year and a half since that day at Chuck E. Cheese and I still have those 99 tokens. They used to be in my car but now they sit on a shelf in the kitchen. They are right near the coffee pot I reach for first thing every morning. They are one of the first things I see as I start each day and serve as that tangible reminder that grounds me to my reality that I live with a child with Sensory Processing Disorder.

A lot has happened since that day at Chuck E. Cheese and my daughter has grown and changed in many ways. She has started elementary school and found success. She has become more emotionally mature and is better able to communicate her feelings. She is learning her body’s responses to her environment and beginning to self soothe and seek sensory input in appropriate ways. I have also changed in many ways since then. I have become more educated about Sensory Processing Disorder. I have been better able to read ,y daughter’s sensory signals and proactively provide her with sensory input throughout her day to keep her more regulated. I have learned to let certain behaviors go because I realize the sensory need behind them..as long as she is being safe and appropriate. I have found my village of sensory parents that I can go to for comfort and support. All of these things have contributed to her sensory success and, with all this success, it could be very easy to think that her SPD has gone away. But then there are those tokens…I see them first thing every morning and, much like that first cup of coffee, they are a necessary start to my day. I have realized, that when things are going well and progress is made, it can be very easy to forget about my daughter’s SPD. So, putting those tokens in a place I go to first thing every morning is the reality check I need to make sure I don’t forget her needs.

However, two weeks ago something happened that gave those 99 tokens a different meaning. My daughter was invited to a party at Chuck E. Cheese. Her first instinct was not to go…Chuck E. Cheese is my daughter’s sensory Mount Everest. Yet, I convinced her to give it a try and she agreed. The whole ride she was silent. For the first ten minutes, she clutched my hand so tight her knuckles were white and her entire body shook as if she was freezing. It was enough to make me almost turn around and chalk this experience up to a loss. But I let her take the lead and as her friends arrived she became excited and played games..running around and laughing with friends. Halfway through the party. she ran to me and, almost in tears, insisted that we leave. Instead, I took her to a quieter spot away from the party and kept whispering, “You are fine, you can do this.” She would protest, I would reassure her, we would take deep breaths…over and over again. Her heart was pounding so fast and I had to fight the impulse to pick her up and take her away. But, I knew she could do this. And, more importantly, I knew how proud of herself she would be if she got through it. Slowly but surely she relaxed as I kept telling her to just hone in on whatever it was that was bothering her. When she said, “It’s too loud” I would tell her, “It’s just the games” And I would isolate one sound from the zillion that were screaming around us and identify that sound with a particular game. One by one she took ownership of these sounds that were competing with her brain for attention and, as she began to separate them and make sense of them, she began to relax. When I felt she was ready, I encouraged her to go back to the party but she said she couldn’t. So, again, I gave her a clear goal..I told her to go find a friend who was running around and just join in. She did, and after what seemed like an eternity, she continued to enjoy the party as if nothing had happened. We stayed the entire two hours. Never had I worked so hard…two long, exhausting hours that only the parent of a sensory child would understand. But she did it..she triumphed..she overcame. She finally climbed Mount Everest..and not only was she proud of herself but she realized it wasn’t so scary after all.

Since that day two weeks ago, I still look at those 99 tokens first thing every morning. And yes, they still remind me of my reality that I live with a child who has Sensory Processing Disorder. But then, they remind me of something else.They remind me that Sensory Processing Disorder does not define my daughter. It does not govern our lives the way it did years ago when we didn’t know how to help her. Sensory Processing Disorder is never going to go away but it can be managed. It takes work, it takes patience, and it takes training. You must prepare for everyday occurrences a bit more than the average person and you must think outside of the box on a regular basis. No person who ever climbed Mount Everest did it on a whim..they did research, made plans, and prepared for as many anticipated scenarios that could arise during their journey. That is how to successfully reach the top of any mountain you may face. Those 99 tokens remind me not of places we have to avoid or things we cannot participate in. They remind me of my daughter’s courage to face situations that she knows make her uncomfortable, of all the progress she has made in the last year, and of all the possibilities for success that await her in the future. I used to look at those 99 tokens and feel sad that my daughter had to struggle with something that made everyday life difficult for her. Now, I look at them and smile. Those tokens have become a permanent fixture in our house. They are never going anywhere and I wouldn’t have it any other way.

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