I have wondered about the subject of this blog for a pretty long while. I have wanted to write about this many times but was unsure how to approach the topic, and did not want to offend anyone with my opinions. I have concluded that someone may always be offended and there is not much I can do about that.
April was Autism Awareness month as well as Child Abuse Prevention month and maybe others. I saw many speakers, shows, fundraisers, flyers, awareness projects, commercials, etc during this month in an effort to help the public understand and help the Autism cause. I am so impressed with the number of organizations, amount of coverage, research, and sheer volume of people reached by this campaign and throughout the year.
I am truly in favor and support all the efforts put forth. I admire, respect, and sometimes am in awe of the parents, caregivers, and others who deal with autism and autism spectrum disorders. While I appreciate the awareness they provide for Sensory Processing Disorder (SPD), as many autistic persons also have sensory issues, I want to have more focus on SPD as its own disorder, not as a possible symptom of something else.
One symptom of many does not justify nor truly represent the scope of SPD, nor the struggles of those affected. For example, when reading symptoms of an illness many include headache and nausea. The focus is then not on the symptom but the overall diagnosis. If the diagnosis is cancer, the symptom of headache/nausea seems somewhat insignificant. To those who suffer with migraines these symptoms are anything but. Most people do not understand the impact migraines can have on a person. They tend to view them as just a “headache”. I don’t want SPD to be “just a headache”.
Recently I was watching “Primetime: What would you do?” They had a family out to eat with an autistic child. When the child began to disrupt the other diners few patrons got upset. Many commented that there is simply something “not right” with the child, and a fair amount even knew that the child was on the autism spectrum. If one of our “sensory” children were out and caused a disturbance, would the public understand what we were dealing with? Mostly I think no. I have been out in public with my daughter when she was having a total meltdown in a store. I did my best to calm her and tried to minimize the outburst. When I looked up I was met with judging eyes and heard several comments about how I should “take care of that”, and “no child of mine would act that way in public”. My favorite was, “She should just take her out of here.” I am fortunate that public opinion is not that important to me anymore. If folks don’t like what they see then they should stop looking. I have also had people observe me in public when I was at my wits end and had no patience. The looks I received were awful. Even though I knew I had not hit my child, the looks made me feel as if I had. They had failed to see the major meltdown and behaviors that had brought us to that point, they simply judged in the moment. Most days I am able to walk away and chalk reactions up to lack of education and relief that I will probably never see these people again. Some days though, when all is done and I am by myself, I blame myself and feel guilty about my reaction. Most times our children don’t know why they are acting the way they act. I try to remember that 98% of the time it is not done intentionally to tick us off! With all this said, I wonder why SPD is not as publicized. What are we not doing as parents that we could be?
Luckily we are blessed to have the Sensory Processing Disorder Foundation, Sensory Planet, all our bloggers and many other sites and people who do so much to raise awareness about SPD. So what is it? Why is SPD not talked about regularly on Dr. Oz, The Doctors, The Today Show, The View, The Talk, (my favorite) Ellen, and so many others? What can we do to have these shows aware of our cause?
The SPD Foundation and many others asked us to participate in a writing campaign to Oprah. I was so impressed with the number of people that wrote and the stories they shared, but Oprah did not call. There are also many famous people who have spoken out about the effects Autism has had on their lives. They have children, friends, relatives, or they themselves are affected and many promote and educate regularly. Where is our Temple Grandin? Who will be our celebrity?
I love that October is Sensory Awareness month. Parents and organizations around the world have held very successful events through the Sensation Celebrations the SPD Foundation has encouraged. These organizers have raised money for the Foundation and promoted awareness within their communities. These events allow SPD to be in the spotlight and help raise money for the SPD Foundation to promote research, education, advocacy and so much more. To all of you, thank you. To those that want to organize or attend an event go the Sensation Celebration webpage here. The Foundation has made it very easy with all the tips, tools and forms already created for you.
October is also Domestic Violence Awareness, Breast Cancer Awareness Month and Cyber Security Awareness Month. These very important and relevant issues often overshadow the amount of coverage Sensory Awareness month receives. I know this from what I have personally observed and also because when I “Googled” October Awareness, these three causes were listed on the first four pages of the search. I got to page four of the search and there was still no mention of October being Sensory Awareness month. When most media outlets have several events to cover, they tend to choose the most recognized one. How can we get them to give as much attention to SPD awareness month?
We have an opportunity NOW to help advance the efforts of the SPD Foundation by writing our stories and providing the APA with valuable input on how having the SPD diagnosis can help us and change the lives of our children. The Sensory Processing Disorder Foundation is coordinating a final comment campaign to show the APA there is widespread, informed support for the inclusion of SPD in the revised Diagnostic and Statistical Manual (DSM-5), to be published in 2013. This is an amazing opportunity to inform persons who can make a change. When you are done reading this, take a moment and write your stories. Tell them why it is so important for our children to be recognized. Every letter of support makes a difference. For specifics about the campaign and information on how to help go to the Sensory Processing Disorder Foundation’s DSM Comment Campaign webpage here.
In September, all my children will be in school and I hope to spend more time trying to educate and promote more awareness about Sensory Processing Disorder. If anyone has ideas, contacts, wants to help, etc. please contact me at email@example.com and we can strategize. .
Take these opportunities and submit your comments to the APA and host or attend a Sensation Celebration event in October. These are two ways we can make a difference now. I wish I could offer more answers and fewer questions, but I can’t. For now, I have only succeeded at raising some funds and promoting some awareness. Don’t get me wrong, I am so happy that I have been able to make anyone aware or help them in their journey. I just want SPD to become a disorder that is well known and spoken about often. I want those affected to receive the help, education, and services needed; I want these services readily available and manageable for people to find and utilize.
WANT TO HELP?
AMY BORNHOFT lives in Virginia with her husband, son, and twins (boy and girl). She works for Soulcial Solutions, developing new business and Child Development Resource Center, raising awareness and funds. She also facilitates a support/resource group through Parent Connections at the Sensory Processing Disorder Foundation. She would like for readers to identify with her families experiences and realize they are not alone. She also hopes parents will open up about the positive and negative impact Sensory Processing Disorder has on their lives.