Last year, I was at a breaking point. I had this child who had needs that nobody understood. She had been to two different schools with almost no success. She was explosive and sad and anxious…and she was only four years old. My husband and I had fully accepted she had extra needs when she was still an infant and we tried our best to accommodate her but she was getting older and spending more time in school and other places where others had to manage her. And nobody could. She cried, she screamed, she fell apart on a daily basis and she was starting to notice her behavior was different from others. She felt frustrated and alone..and so did I. While my husband has been a consistent partner from the start, our daughter’s struggles were starting to become the only thing we talked about. We spent most of our time and money on play therapy and parenting groups. Getting our school district to recognize and meet our daughter’s needs became a job that was taking precedence over my duties at home and to my children. One night, when this constant worry kept me from falling asleep, I started to write. And it felt good….really, really good. By the time I was done, I felt as though a weight had been lifted. In a matter of hours I had two essays and a list of many more experiences I needed to get off my chest. After reading other parents’ stories and sharing some of mine on a sensory blog site I got the idea to create my own space for my thoughts. And, at that moment, My Sensational Girl was born!
On July 11th of last year, I impulsively decided to share my first couple of essays on Facebook. I was so beaten down by the lack of recognition for my daughter’s issues and I felt that I had a duty to raise awareness for her sake. The response was overwhelming. The essay that got the most attention was one in which I tried to get people to discuss the everyday things in life that ignite a heightened response inside of them. For the first time, I felt like people had some sort of understanding of what was going on inside of my little girl on a daily basis and understanding was all I ever wanted for her. Almost immediately, I received several private messages from Facebook friends who were seeing the same in their children. Some of these friends fully understood what was going on in their children and some could see that their child was struggling and for the first time could put a name to their issues. Soon enough, I started getting messages from people who were referred to me because my blog was read by someone they knew. All of the sudden, I had this small network of people who understood what I went through on a daily basis with my daughter..the accommodations I had to make, the judgement I received, the struggles to overcome normal things in everyday life that most people don’t think twice about. I was no longer alone..and neither were they.
Every month I would post a new story about my daughter and, each time, my new confidants would almost instantly private message me to discuss what was going on in their lives with their children. We became a source of support and comfort..venting our frustrations and sharing our resources. And, in one of these message exchanges, a fellow sensory mom gave me the idea to help link all these wonderful moms together. I created a private Facebook group and invited all these moms with similar children to join. Now all these great women who had become a constant source of support for me could now support one another. In six months, our group has grown to over 20 members. This may not seem like a lot but to all of us who had felt so alone only months earlier, this small community was more than we could have ever expected. Each one of these moms has told me how grateful they are for what I have done for them. What they will never realize though is how much they have done for me. I started sharing our stories to raise awareness for my daughter but subconsciously I believe I was reaching out for a lifeline I so desperately needed. These moms are my lifeline and my comfort zone, and most of them I have never met.
So much has changed in this last year since I decided to share our story. This year, I watched my daughter balance the highs and lows of Sensory Processing Disorder. I have seen her sensory related behaviors shift from melting down to verbalizing when she needs a break, or a jump, or a spin. I have learned that as she gets older her needs and her signs of overload are shifting and changing. I have celebrated her triumphs and have tried to instill in her that trying and being aware of your own limitations is a victory, not a failure. I have realized that I need to focus less on stopping certain behaviors and more on trying to replace them. I have shifted to a more proactive approach to her needs rather than a reactive one by giving her more sensory input throughout her day to prevent overload instead of rushing to pick up the pieces when she’s reached her breaking point. I have learned that there is more to SPD than meltdowns and that the best way to educate myself is to pay attention to my daughter because almost everything she does has a sensory related purpose. I have fought my school district to recognize my daughter’s needs to ensure her success in Kindergarten next year. And, lastly, I have learned that there is such a thing as making too many accommodations for my child’s extra needs and that the key to success when dealing with SPD is finding the balance between pushing her past her comfort zone and being respectful of what she cannot tolerate.
Going forward I hope to gain more insight into my daughter’s needs and to incorporate ways to meet those needs on a daily basis in as natural a way as possible. I hope I can inspire her to be comfortable and confident in her own skin. I hope that she will see in herself the bravery, resilience and determination that I see. I hope to have more patience with her and to better practice what I preach to other parents with similar children. I hope to continue to share our stories and find ways to reach a broader audience so awareness for these children can be raised. I hope to encounter more parents of children with SPD so our network of support and resources can grow. I want to thank all of you for taking the time to read our story. In the last year, many of you have reached out to cheer us on when we succeed or to lift us up when we were at our lowest. Some send me articles or information on SPD or share our stories with others. All of your efforts have been recognized and mean more to us than you could ever know. Your efforts mean awareness and awareness brings change. I never intended to change the world, I just intended to change my daughter’s world and there are far more children living in her world than I realized. For the first time in a long time, I feel hopeful for what lies ahead. They say it takes a village to raise a child and, while it may have taken us awhile, we have found our village in all of you.