I love all things summer. As a kid, I looked forward to our trips down the Jersey Shore where we spent our days on the beach and our nights on the boardwalk. As an adult I envisioned making summer memories with my own children. Then, five years ago, I gave birth to a sensory child. Sand, water, heat, fireworks, amusement park vacations, outdoor carnivals…of all the things my daughter cannot tolerate these things that most families look forward to during summer are the ones she hates the most. Our last family vacation was two years ago where my daughter wanted to do nothing more than sit in the hotel room and eat snacks. We spent more time preparing for summer activities than engaging in them so, two years ago, I put a stop to summer. No beach trips, vacations, very little outdoor activity. The stress of these things on my daughter was so strong it trickled down and effected us all. My husband and I would fight, she would melt down. It wasn’t worth it to me anymore. Teaching her to overcome and tolerate what she can’t has always been my goal but it became too difficult for me during summer. My favorite season became the one time of year I dreaded. So, summer ceased to exist in my house. We limited ourselves to the handful of tolerable activities that my daughter would participate in and didn’t bother to discuss the possibilities of a family trip or a day at the beach.
This past year was a victory for us in terms of my daughter receiving proper treatment for her SPD. After years of battling our school district to recognize and meet her needs, we finally won. Our victory included IEP goals that related directly to giving her sensory input and occupational therapy that was to start over the summer to make up for the years she did not get what she needed. My husband and I continued to educate ourselves and had begun to understand what our daughter needed. In addition to the district approved OT, we enrolled her in a summer sensory group and have implemented many ways to incorporate sensory input into her daily life. So, with all these interventions in place, this summer began very differently. My daughter is more relaxed, both physically and mentally. She is far less hyper and not nearly as emotional. And, as summer unfolded this year, my daughter seemed more willing to try new things. Last month, we had our first trip to the beach in two years. She ran onto the sand screaming, “I love it here!” We stayed for four hours and I watched her happily participate in all beach related activities with her friends. We have spent many summer days at the pool with friends for hours on end. She will get out of the pool and eat her lunch in her wet bathing suit instead of pulling it off the second she gets out of the water. We attended an outdoor movie in the park and while her first instinct was to leave the second the movie started because the sound was too loud, she stopped herself and stayed the entire time. Since then she has asked to go back again, which is a huge accomplishment. She began practice for a fall cheer team, allowing her counselors to teach her to tumble and hold her up in the air over their heads. She has never tolerated anything like this before. For the first time in years, she is enjoying summer as any child should. And while she has her limitations, I am starting to see that they are not defining her as they have in the past.
This summer, however, has not been without its difficulties. There have still been plenty of times her SPD has prevented us from participating in overstimulating activities. We had to leave a birthday party because the noise in the arcade was too much for her to process. Her sound sensitivity led us to leave an indoor trampoline park and prohibited her from riding a carousel with her sister and me. Yet, even these instances have presented themselves much differently than they have in the past. First, her reactions were far less extreme. She never reached the point of melting down in any of these situations. She expressed a desire to leave and, even when visibly upset, she was able to hold herself together before reaching that boiling point. Also, in these situations she has had to wait to leave. At the carousel, she was forced to wait until her sister and I finished our ride. In the past we would have left immediately and, if we couldn’t, she would most certainly have melted down. With all this success and her ability to tolerate more things for longer periods of time I have seen a change in her. She is the happiest she has ever been. She walks around with her head held high, feeling confident and proud of herself. And, as a parent of a child with SPD, this is the point in our journey I have longed for. Gone are the days I have wished that we didn’t have to deal with this. Instead, I have realized that we CAN live with this and lead full and happy lives.
When I think about what has made this summer so successful many things come to mind. My daughter is older, she is maturing. She can better verbalize her needs and understand what she needs to feel calm and comfortable. Her nervous system is maturing a bit as well making it easier to tolerate things she couldn’t before. As her mother, my attitude and efforts have changed. I no longer get so anxious in overstimulating situations when she expresses that she cannot tolerate something. I try my best to stay calm and implement what she needs instead of flying into my own “fight or flight” state. But most importantly, the biggest change has been that her sensory needs are finally being met for the first time in her life. We have therapists who are targeting her individual needs properly and they have been been able to teach us how to continue their work at home. In turn, we have been able to teach our daughter how to meet her needs as well. And this is what I have been working towards and fighting for the last few years..recognition, understanding and treatment for my daughter as an individual with SPD. Until now, the mere mention of my daughter having SPD has almost always been met with one universal response…”We don’t see it.” Anyone who did try to appease me would address her SPD in a general way, instead of looking at her individual needs. Anyone who was in a position to meet her needs simply had not. And as a result, my daughter paid the price. But the attitude towards my daughter’s SPD has slowly been shifting and the impact of this change has been profound in the most positive way. It has started out with us having one successful summer and, if it continues, the possibilities for her to succeed are endless. For now, though, I will sit back, relax and enjoy this summer for the first time in a very long time.