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 amyb0213@yahoo.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.
Thank you for this blog! I will be a regular follower and will do whatever I can to promote awareness. I am tearing up as I read this having just went through this at church tonight. I was late, so dad had to help mom tonight, which is out of routine. My child is not autistic, he is SPD and APD. He could not understand what his dad was trying to get him to do, in our church’s cafe/play area, with tvs, lots of people, children running, and food being prepared and eaten. It’s LOUD! So I walked in with my cell phone ringing, (my husband calling, he doesn’t handle melt downs well) and my son screaming and crying. Thankfully, it was at church and my church family loves us, so the looks were minimal, but it’s still hard….thank you so much again. I have been buying t-shirts because of so many people not understanding. Yesterday, my son was wearing eye contact is way over-rated. Tonight, he was wearing his boy-SPD shirt, which has snippets of info about SPD, geared more towards boys. I was looking at it while he was crying and taking deep breaths. I know what it is, but as I read the shirt, I couldn’t help but think of everyone at the tables who don’t. The next t-shirt I am getting him has an ice cream cone on it. Caption, Very sweet, but prone to melt downs.<3 Melissa
HI , Thanks for your heartfelt message .
Id like to add from the UK there is still little awareness of this as a discrete condition either in Children or adults .
I have found it does occasionally exist on its own , but more often it is accompanying a specific learning difficulty where it tends to be overlooked because of the other ‘ label ‘.
For example people with Dyspraxia (Developmental Coordination Disorder or DCD) almost always have have severe sensory integration problems, as do those on the autism spectrum .
As children grow up ,if these issues have not been identified ,the sensory difficulties with resulting ’sensory overload’ are a major cause of a poor work or sickness record, stress and mental health problems in adults .
I’s like to see Sensory Processing difficulties added to the description of Dyspraxia DCD on the DSM- 1V , as well as being a stand alone diagnosis .
The good news is that it can be treated efby Occupational Therapists with SI training and, once identified, the person can create strategies , get reasonable adjustments at work and take charge of their life !
Being extra sensitive has its advantages to musicians , artists and those who care for others ,or animals (like Temple Grandin ) .
All the best to your family the SPD foundation !
I will follow with interest.
Frances Beaumont Dyspraxia UK
Amy;
I came across your blog from searching for SPD information. My son was diagnosed with SPD in October 2011, recently after we relocated from Wisconsin. I always knew something was wrong with my son at 3yrs old. No one gave me any answer, nor is pediatrician paid me any mind when I told her my son is displacing autistic behaviors. We would walk in a store and he had a meltdown; but still no answer, he would be afraid of light and loud sounds but no medical help for us. His behaviors was like he cannot connect to the world around him or the world was affecting him. Recently his school did an IEP and the school psychology said my son have Autism. Well his doctor totally disagree and also his OT that he’s seeing every week how for SPD. I am so hurt and disappointment that not enough awareness and education is done on SPD and kids are misdiagnosed because of this. It felt like an eighteen wheeler truck hit me on the free-way last week. I rush to the library to find all the books and video’s I would on Autism, but it didn’t add up to me so I stop reading them. My son is very intelligent and friendly; yet the school said he was not. I am anger and hurt at the same time. I feel so sorry for him not knowing if he will be able to over-come this disorder and how is he going to function in a public school setting. I would like to take a year and home school him for done; so I can help with over-come his sensory issues; but will I rob him from the social environment or not. At this time I don’t think the school system is aware and SPD and the difference with Autism. Financially I can’t afford a private school for him because we relocated and I am only working very part time. Most of the treatment and workshop I see out there to help us help him we can’t even attend. I would love to travel to different daycare in my area and help education the providers on SPD kids so that they are better able to deal with them without abuse. Not enough information is out there on this disorder; everyone talks about Autism; ADD/ADHD etc. You tell me what can I do and I will do it..
Rackell
Melissa..thanks for reading. I love your strategy about the t-shirts. I think we should have tons made up with various sayings. I know some days when I am in the heat of it I would maybe respond better if she turned around with a t-shirt on reminding me of the core issue!
I often bite my tongue with my husband and want to rush in when he is dealing with Maddie and remind him to just think about the possibility it is the SPD stuff and not her just acting out. It is so hard to know when and how much to interfere. It is great that you have such a wonderful family at church…the support is really helpful, even if they don’t totally get it.
I would love to hear more from you and a little of your story. Don’t forget to write to the folks about the DSM, the SPD foundation has a great site to help you step by step! Every voice makes a difference!
Thanks so much for reading and for taking the time to comment. It really makes me feel better to be able to reach out and connect with folks. It gives me motivation to continue to share and revs me up to do more! Thanks so much!
Amy
Frances…great to hear from you. It is interesting to hear from someone in another state, it is really interesting to hear from folks in another country. Thanks for taking the time to write and educate us on what you are dealing with.
Madison had a lot of physical delays and fine motor skill delays, that is what enabled us to get treatment. As long as she was 25% developmentally delayed she could get services. When she overcame those delays through OT’s, brushing, joint compressions and other help, all that was left was the SPD. She is an overresponder, and has a hard time filtering her enviroment. She is amazing to watch and to have traveled this journey with. She is so strong, sweet, empathetic, smart and resilient.
I think it would be great if SPD could get a stand alone diagnosis. Did you see Temple Grandin’s lecture last week? Sensory Planet had it on their site. At her lecture she agreed that Autism is used to often as a diagnosis when Autism is not the actual issue. I think she was in agreement that we can not just take these children and label them in a category that is so broad. If you are diagnosed with Cancer, that is such a huge diagnosis. Cancer can mean death or it can mean a simple procedure or somewhere in between. It is not until you are aware of the cancer you have that you can then understand and seek help. It seems to me that Autism is the larger diagnosis. I get that SPD can be a symptom or a part of Autism but from what I have seen from my personal experience, and reading , I feel SPD can also be a stand alone diagnosis.
Whatever it takes to get awareness out there and parents and kids supported and recieving services is OK with me.
Thanks so much for taking the time to respond. I would love to hear more about what you have encountered and observed. Take care, it was great hearing from you.
Amy
I hope I can help out. I am an adult (32) with SPD as well as Asperger’s Syndrome. It’s always baffled even those fimiliar with ASD and sensory issues as to why I can be so intellegent and still suffer so intensely from hyperacute hearing. I have been helped, but I will never be cured. Intellect & sensory processing are in 2 seperate areas of the brain. I blog @ the website listed above my comment exclusively about SPD & Asperger’s. I also have a YouTube channel dedicated to the 2 subjects http://www.youtube.com/user/autisticaplanet. My ears dictate each & every decision I make. Getting SPD recognized within a greater amount of neurological disorders would mean more funding for research. Education, employment & living enviornment are also things parents have to consider as their kids grow up & won’t be there for them someday. My 73 y.o. mother isn’t in good health, and we are still wondering about this because of my SPD.
Thanks so much for sharing your experiences and your thoughts on this. It is amazing to have someone who is experiencing what I am writing about. I look forward to reading more from you. Thanks again, it was great to hear from you!
Our Grandson who is 9 years old has dyspraxia and possibly more verbal dyspraxia than other. Our daughter and her husband are both simply magnificant with their time and support and they have always done everything and more (and they continue to do so) to help our beautifully natured and happy boy.We are very close to our Grandson however we remain at arms length and bow to his most caring parents when it comes to how they care and provide support each day.We have just learned that the parents are contemplating keeping our little man down next year and having him repeat a year. Naturally, we only wish to fully support our family’s decision howeever, my wife and I are wondering if there is enough information to suggest that this is likely to be the best approach. Another option being considered is home schooling.Is there anyone out there with answers to this question.I have been on myriads of web sites but unable to track any information.Please accept our sincere thanks ahead of time to anyone can just shed some light on this matter.
Hi Amy! Thank you so much for doing this. It means a lot because I have SPD. I still struggle with it sometimes, although I have learned to better cope with it. It is sometimes hard because my friends don’t understand why I can’t do certain things. I have been homeschooled in the past, and it is much easier for me because I can go at my own pace. I find that being a dancer has really helped me to cope with SPD. Thanks for promoting awareness. <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3