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.

]]> http://spdfoundation.net/sensory-processing-blog/2012/05/16/help-promote-sensory-processing-disorder-awareness/feed/ 2 http://spdfoundation.net/sensory-processing-blog/2012/04/30/a-teenagers-success-story-a-look-back/?utm_source=rss&utm_medium=rss&utm_campaign=a-teenagers-success-story-a-look-back http://spdfoundation.net/sensory-processing-blog/2012/04/30/a-teenagers-success-story-a-look-back/#comments Mon, 30 Apr 2012 23:13:25 +0000 susanne http://spdfoundation.net/sensory-processing-blog/?p=1479 Editor’s note: Woody Sims is an18 year-old with SPD. He is about to graduate from high school and will be attending Trinity University in San Antonio, Texas. Woody is a remarkable young man who became a part of the SPD Foundation and STAR Center family many years ago when he came for occupational therapy. Over the years, Woody has volunteered his time to help in any way he could. His parents, who own a few local restaurants, have also been incredibly supportive of the Foundation by catering numerous events over the years at no charge. We wanted to share Woody’s success story, which just so happens to be his entrance essay for college. Thank you, Sims family, for your devoted support.

By Woody Sims

I was never what you could consider a “normal” boy. Sure I was in boy scouts for a year or so, I enjoyed cartoons, and I played imaginary future army games with my friends from time to time. However, most of the time I spent my days pretending a picnic table on the playground was a computer, my friends were vampires, and my basement was a haunted mansion. While that could be chalked up to good old-fashioned imagination, my deep fears of loud noises, cooked carrots, and handwriting, however, were something else entirely.

After much research and many consultations, it became clear I had a condition called Sensory Processing Disorder, SPD for short. Basically, those with SPD can’t process stimuli correctly. Either they get overloaded with stimuli and can’t handle it, or they end up with too little stimuli and actively crave more. I was over-stimulated, which meant I couldn’t handle certain textures, and freaked out at loud noises. I also had problems managing tasks with multi-sensory inputs, like handwriting and catching a ball. These sensory problems meant that sports, driving, and concerts would all be things I couldn’t ever do or see without a great deal of difficulty.

Despite the multiple negatives, there was still a positive twist. SPD wasn’t, and still isn’t, recognized as a condition. Not enough research had been done on it in time for the psychiatric handbook refresh. One of the biggest arguments against SPD as a diagnosis was that these complications, over- and under-stimulation, could easily be ADD or even Autism. Lucky for me, they needed someone with signs of SPD and without ADD or Autism for their research, and I fit the bill perfectly. I would be able to get treatment as part of the study, and the usually expensive therapy would be free.

The best treatment for SPD was Occupational Therapy, which in essence had me moving between different styles of platforms suspended from the ceiling over a floor covered in gym mats. My therapist, a nice British woman named Andrea, told me which platform to move to, and I would try to get there. At first, I struggled. Some platforms were easy enough to get on, and would only take a couple of tries. There was one, though, that was evil. It was basically a gymnastic vault horse, covered in padding, and suspended from the air without any handles. It was nearly impossible to grip, since it hung higher than most of the other platforms, and it was always just a little bit out of reach. Sometimes I would spend an entire hour trying to get on that annoying horse, and still never get it. Weeks passed, and I managed to squirm onto it if my therapist held the platform closer. Then one day, without any help, I reached for the horse, pulled it closer, got my leg over, and it was over. I had conquered the horse. In my moment of glory, I heard Andrea say, “Good, Woody. Now, move that one.” The phrase “get back on the horse” never had more meaning.

In the end, I’m still not a normal kid. I often prefer the company of myself to the company of friends, I listen to dance music, even when I’m not dancing, and my current dream careers consist of Imagineer at Disney or CEO of Disney. The only difference is that now I play varsity basketball, sit in the front row at concerts, and hate cooked carrots because of their flavor, not their texture. As for the other stuff, I think why be normal? Being different is way more fun.

I may not be able to take the pain from the rejection you might feel when you aren’t able to interact with the ’sensational’ kid in your life. What I can do today is shine a bit of hope in your own situation by sharing a snippet from our own journey. Jaimie gave her Grams a gift more precious than anything a store might offer and it happened because Grams was patient, took the time to learn about her grandchild’s needs and how those needs affected both the child as well as her ability to relate to others. It’s all about love, education and understanding.

Grams came up for a visit last month. She only gets to come up two or three times a year to visit her grandchildren. Needless to say, her visits are very special. So imagine how much it would hurt to be through-the-top thrilled about having a grandchild only to come visit her and be rejected. Just like what we’d gone through with her dad, Jaimie refused to have anything to do with her Grams. Visits in the early days were spent with Jaimie clinging to my legs, screaming. And, of course, Jaimie would wake up hourly from the anxiety of knowing when she got up, that this stranger would be in her house again. It was a combination of change in routine, a different source of sensory stimulation and another person she had to get used to. I’ll bet that had to be excruciating for Grams. But she never gave up.

As time went on, and we added Jordy to the mix, things got a bit better in that Grams was at least able to interact with one of her grandchildren. Once we figured out what was going on with Jaimie, and we educated ourselves, I was able to educate Grams at the same time.

What I most admired about her was that Grams never gave up. She tried interacting with Jaimie every time she came up. She brought Jaimie books and crafty-like things (as Jaimie was never into toys) that she could interact with Jaimie through. I thought that was so amazing. She wasn’t just trying to understand Sensory Processing Disorder (SPD), she was trying to understand Jaimie as the little girl she was who just happened to be living with SPD and Spectrum issues. She never treated her as ‘different’ or was scared off by Jaimie’s reactions but figured out what that middle ground was where she could create that grandmother/granddaughter bond with Jaimie that came so easily with the other kids. And it paid off.

Now Jaimie looks forward to Grams’ visits. Yes, there is still anxiety and stress from having an extra person around or the change in routine but it’s gotten better. A lot of it probably has to do with the fact that Jaimie is able to self-regulate most of the time and can verbalize her feelings/needs alot better. But another part has to do with Grams’ unconditional love, patience and willingness to learn and understand.

Grams’ most recent visit was monumental for a few reasons, but the most significant thing happened just before Grams left. Jaimie’s highly sensitive tactile system often prevents her from getting close to people. Hugging and other forms of physical contact are a ‘No way!’ for her. She has never been able to give Grams’ anything but a High Five when saying hello, goodbye or see you tomorrow when we take her back to her hotel each night. This time when Grams was collecting hugs and goodbye presents the other kids’ had made for her, she got to Jaimie and held her hand up to get her traditional goodbye High Five. Imagine everyone’s surprise when Jaimie actually hugged her!

I wish I’d had my camera to mark that day. She still doesn’t even hug her dad or tell him that she loves him. The only people she gives true hugs to besides me are her best friend Maddie and her wonderful teacher, Mrs. Baulkham. I’m sure Grams is back in Winnipeg telling everyone about the precious gift she’d gotten. It may not happen again next time but…it happened. The door has been opened for more possibilities.

My message to other family members and friends in Grams’ position is to keep doing what you’re doing. Keep your heart open, your mind working on new ways to connect, continue to educate yourself not only on the child’s form of her condition but her specific form of it and never give up. The child may not be able to tell you this but she really does want to connect, she just needs time to feel safe doing so. Don’t try changing her, just work within her safe boundaries and branch out from there.

Grams would tell you it’s well worth the wait.

CHYNNA LAIRD – is a psychology major, freelance writer and multi award-winning author living in Edmonton, Alberta with her partner, Steve, and their three daughters [Jaimie (eight), Jordhan (six), and baby Sophie (three)] and baby boy, Xander (four). Her passion is helping children and families living with Sensory Processing Disorder and other special needs.

You’ll find her work in many online and in-print parenting, inspirational, Christian and writing publications in Canada, United States, Australia, and Britain. In addition, she’s authored an award-winning children’s book (I’m Not Weird, I Have SPD), two memoirs (the multi award-winning, Not Just Spirited: A Mom’s Sensational Journey With SPD and White Elephants), a Young Adult novel (Blackbird Flies) and an adult Suspense/Thriller (The Gift to be released late 2011).

Please visit Chynna’s website at www.lilywolfwords.ca, as well as her blogs at www.the-gift-blog.com and www.seethewhiteelephants.com, to get a feel for her work and what inspires her.

Our Sensation Celebration truly embodies the dedication and triumph that families who are raising children with Sensory Processing Disorder find every day. These families, like the dedicated scientists and doctors who continue researching SPD, all began this journey “One Step At A Time”. Now you can join these remarkable families and researchers in communities all over the world by participating in our annual international event!

Organizers can plan a walk-a-thon, fun-run, community walk or any type of fundraising/awareness event they choose. Or, if you just don’t have the time to organize a community event, then just set up your own personal fundraising page through GivingFirst.org, gather pledges and go take a walk yourself, maybe inviting your family and friends to join you! All you need are your walking shoes and a desire to see research for Sensory Processing Disorder continue.

Organizers are encouraged to schedule their Sensation Celebration during National Sensory Awareness Month in October but are free to hold their events any time during 2012 if a different month is more suitable in their area.

We have already created all the tools, forms, handouts, etc. that you will need to run a successful event. Check out the Organizer Page on our website for all the details.

Please consider joining the Sensation Celebration team by organizing an event of your own this year. For more information go to www.spdfoundation.net/celebration2012. To sign up to become an organizer contact Susanne Geiler here.

Save the date for the Greenwood Village, Colorado Sensation Celebration on October 19, 2012. The SPD Foundation is partnering with the DTC Rotary Club for a gala and auction event. This evening of entertainment will consist of gourmet food stations, cocktails, live music, a silent auction and a live auction! More information to come on this very special event.

*Photos courtesy of McBoat Photography.

This study partially supports the new taxonomy proposed by Miller and colleagues (2007). Two of the three Sensory Processing Disorder subtypes were identified in a sample of 94 children. These children were clinically diagnosed by occupational therapists as having Sensory Modulation Disorder (SMD).

Sensory Seeking/Craving (SC), which was characterized by the following:

Hyperactivity, impulsivity, delinquent and/or aggressive behaviors, poor socialization, inability to adapt, and impaired cognitive and/or social behaviors

Sensory Under-Responsivity (SUR), which was characterized by:

Movement sensitivity, emotional withdrawal, low energy and/or weak muscles, fatigue, poor balance and motor control. These behaviors may occur because children with SUR tend to avoid activities that challenge their balance and motor coordination.

Although Sensory Over-Responsivity (SOR), which is characterized with adverse responses to touch, visual, taste, sound, and smell stimuli, did not cluster as a separate subtype, it was present in both Sensory Craving and Sensory Under-Responsivity.

The results of this study are different from previous hypotheses about the relationship between Sensory Under-Responsivity and Sensory Craving as well as the relationship between Sensory Under-Responsivity and Sensory Over-Responsivity. Unlike Winnie Dunn’s model, the individuals in this study with Sensory Craving did not have Under-Responsivity in the proprioceptive and vestibular domains. In addition, this study did not find that Sensory Under-Responsivity and Sensory Over-Responsivity were on a continuum as suggested in other writings. Rather, Sensory Under-Responsivity and Movement Over-Responsivity co-occurred in this sample.

Additionally, a high percentage of our sample displayed behaviors characteristic of ADHD and similarly a high percentage of children who met criteria for ADHD were reported to have SMD. Specifically, 75% of the children with SMD had significant sensory craving and hyperactivity while 82% or the children with ADHD had sensory modulation difficulties. Therefore, therapists and parents are advised to evaluate children for both SMD and ADHD in order to obtain the appropriate and effective interventions. For example, children with SMD tend to become calmer with sensory activities, while children with ADHD may become more hyperactive and disorganized with the same activities.

This research supports the finding that children with ADHD are a heterogeneous group and may present with multiple characteristics of SMD. For example, children with ADHD often have features of sensory craving as well as sensory over-responsivity. Given the likelihood of overlapping symptoms occurring in these disorders, it is important for clinicians to have tools to better differentiate them. In the future, we hope to have measures of direct performance to better differentiate clinical disorders from sensory modulation subtypes.

]]> http://spdfoundation.net/sensory-processing-blog/2012/04/11/new-study-supports-subtypes-of-sensory-modulation-disorder/feed/ 3 http://spdfoundation.net/sensory-processing-blog/2012/03/21/reflections-of-the-journey-would-you-change-any-of-it/?utm_source=rss&utm_medium=rss&utm_campaign=reflections-of-the-journey-would-you-change-any-of-it http://spdfoundation.net/sensory-processing-blog/2012/03/21/reflections-of-the-journey-would-you-change-any-of-it/#comments Wed, 21 Mar 2012 14:52:20 +0000 susanne http://spdfoundation.net/sensory-processing-blog/?p=1341 Madison and her twin brother have just turned five. We had a fantastic celebration! We threw a bowling party at a small bowling alley. The girls had one side to themselves and the boys had the other. They were all so amazing and interesting to observe, especially Madison.

I could not help but take a moment and reflect back over our journey these past five years. It has been scary, exciting, frustrating, sad, comedic, and so much more. I often wonder if I could change what had happened and/or her diagnosis, would I? Some days I would in a heartbeat, but for the most part, I don’t think I would.

I would change the pain and frustration it has caused Madison. I would also change the time it took away from her siblings. When I think about all the ways Sensory Processing Disorder has affected our lives, so much of it has turned out to be positive.

In the beginning, the many doctor visits, tests, and therapy were overwhelming, and for Madison, I am sure painful. She eventually got used to it all and came to accept it with grace and viewed therapy with excitement. I believe this has made her brave, resilient, strong, and confident. She has an amazing outlook and is so willing to try new things, especially physical challenges. I never imagined my girl who did not walk until she was two, never crawled and barely rolled over, would one day be doing gymnastics, dance, and t-ball. She has exceeded my expectations by so much and that is because of what she has learned…that she can do anything she believes she can!

A few days ago a friend asked me if Madison was always so nice and happy. My initial reaction was visions of when she would be up all night crying, having meltdowns about everything, screaming when someone touched her. Then I realized none of these moments had anything to do with her being nice. She was nice as a baby and is now one of the sweetest persons I know. Once we knew how to help her and when she was in the right environment, her smile then and now, could light up a room. She has always had something about her that drew people to her. Something in her eyes or in her actions could mesmerize you. As cute as her twin was, and he was, and so friendly…people noticed Madison first. This has continued to this day. She is always noticed and she does demand attention. My answer to my friend’s question was of course, “yes”! She is so nice and so happy. She is always concerned about others and loves trying to make someone laugh or smile. She will talk to anyone and find a way to make them feel so special. Her heart is pure and her amazing soul shines through the depth of her amazing blue eyes.

The time it has taken away from her brothers has been what I wish I could change most. I had two years with her oldest brother before the twins came and we had a lot of wonderful one on one quality time. It was still very hard when he needed something or wanted my attention and I could not fully give it to him because Madison needed my attention. He was at the age where he understood he was being “put off” so to speak. Her twin was so little that many of his needs were able to be met by someone else because they were basic needs like feeding, diaper change, etc. I have so many memories of feeling guilty because I was not caring for him like I wanted to but then felt guilty if I wasn’t helping Madison. The saving grace is that my boys are the sweetest most empathetic boys I have ever met. They knew their sister needed help and they both helped her with no hesitation. They knew something was different about her but they adapted and never really even questioned it. They truly care about others and are concerned about others feelings. They are very helpful and loving and for that I am so grateful. We encounter some resentment and agitation now and then when Madison has her moments, but in the end, they are family and they love each other and they make it work.

As for me, it has made me better and worse. Mostly better but I will save that for another day!

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.

]]> http://spdfoundation.net/sensory-processing-blog/2012/03/21/reflections-of-the-journey-would-you-change-any-of-it/feed/ 0 http://spdfoundation.net/sensory-processing-blog/2012/03/07/dreading-a-change/?utm_source=rss&utm_medium=rss&utm_campaign=dreading-a-change http://spdfoundation.net/sensory-processing-blog/2012/03/07/dreading-a-change/#comments Wed, 07 Mar 2012 20:38:33 +0000 susanne http://spdfoundation.net/sensory-processing-blog/?p=1310 It is amazing how the simplest thing can get so complicated, or how the most insignificant situation can be such a big deal. If you have a sensational child, you know what I mean. It is definitely frustrating for them, but also for me because I wish I could make it all better with a snap of my fingers, or have that magic wand and make their worries disappear. Daily situations like doing homework are a breeze now with my kids because we have a set routine. But what happens when the homework includes something that they might know, but that was not taught in class? I’ll tell you what happens…a meltdown! That happened with my oldest son the other day. He was doing his math homework, when all of the sudden he started whining, screaming, throwing his pencil, the eraser, then the papers follow, I mean, anything his arms could reach at the moment. He finally went to his room to calm down, and I went to talk to him. In his mind, he was unable to complete his homework and that was extremely frustrating for him. After he calmed down a little, I suggested that he work on his spelling homework since that was easier, and then we could come back to his math. His answer was straightforward, “I can’t because that is not the way I normally do my homework. That’s not the order.” For most people this statement would make no sense, and they couldn’t comprehend why he literally couldn’t change the order in which he works on his daily homework. For us SPD parents, we know that even this tiny detail matters, and that his brain just has a harder time adjusting to this unexpected situation. Finally, after we discussed it further, he decided to try harder to complete his math first, which he did, and then did his spelling. Ultimately, he kept his order, but we tackled the challenge that was preventing him from moving forward.

Or take for example my youngest son, whom depending on the day can easily get frustrated because he can’t fit his blanket in the cabinet where it goes. (We have blankets in our family TV entertainment center, that they normally use to play, or we use to get warm while watching TV). When he is unregulated, he can’t figure out that he needs to fold it and then try to put it away. The motor planning is just not there all the time. Or when there is a change in his routine, he will definitely get very hyper. He starts bouncing a lot, bumping into things, leaning against the walls, falling more than usual, etc. He is a sensory seeker, so when I see him acting out like that I have to redirect him to get the input he needs, but in a safe way so he doesn’t get hurt. Little by little he is learning.

There are days in which it is harder because I’m tired. I may be having a bad day, or I don’t feel well…and then I don’t have the same patience. So when these situations arise, I just try to take a deep breath and try my best to keep my composure, but this is not always possible. Sometime mommy needs a break too! I know I’m human but I can’t help feeling guilty for not being able to give them my 100% on those days because I know they need me. I know people say we have to teach them consequences for their behavior, and I do. But there are times in which they don’t even know what is causing that behavior. They are kids and they can’t verbalize their feelings or what is bothering them. So it is my job to help them figure it out so that they learn how their brains and bodies react to the triggers around them. As we all know, anything and everything can be a trigger depending on the day. That’s one of the biggest challenges of SPD.

Changes in the routine and schedules are inevitable. It is part of life. So how do we best prepare them to adapt to these changes? Especially, when our families’ sanity depend so much on following the routine. At what point should we say “forget it” and “let’s go with the flow”? In the next few weeks, we’ll be faced again with this question and a definite change in our normal routine because it’s that time of year again. Spring Break is around the corner, and planning for it can be very exciting but also very daunting. Routines and schedules, routines and schedules, and more routines and schedules! Isn’t that what we all use to make our lives easier? For almost a month now, I’ve been following a friend’s advice and I’ve been making subtle changes on a daily basis. Some have been consciously made, others have happened naturally, as life goes by. Basically, I’m learning with them to adapt to the changes in our routine and try to be more flexible with the schedules. This is a family effort and our kids can’t do it alone. Lead by example right? Most importantly, I’m always reminding them that life happens and not everyone out there will make exceptions for them, not everyone will adjust, not everyone will accept and certainly not everyone will understand. Therefore, it is our job and/or goal to teach them how to adapt and adjust to life’s situations. It is a journey but we are in it together!

REBECCA GONZÁLEZ is married and a lucky stay-at-home mom of 2 boys that have Sensory Processing Disorder (SPD). She spends her days doing the best she can to make life easier and more enjoyable for her family. Rebecca is an SPD Foundation Parent Connections Host and the founder of Let’s Talk SPD, which is a support group in South Florida for families with children with SPD.

Parent Workshop on Sensory Processing Disorder

Sensory-based Strategies for Home, School and Community

Join us on March 16^th for a one-day workshop where we share the basics of Sensory Processing Disorder as well as sensory strategies you can use every day at home, school or in the community!

March 16, 2012

Boston, Massachusetts

Where:

University of Massachusetts
Campus Center

100 Morrissey Boulevard
Boston, MA 02125

617.287.4800

Accommodations:

DoubleTree Club Boston Bayside

240 Mt Vernon Street

Boston, MA 02125

617.822.3600

(by March 1)

Who should attend:

parents, grandparents, caregivers and anyone wanting to learn more about Sensory Processing Disorder and sensory strategies for everyday life

Cost:

$169 for parents

$229 for professionals

You’ll learn:

• SPD fundamentals with easy to understand examples
• Tips for successful play by Doreit S. Bialer, MA, OTR/L, author of No Longer A SECRET: Unique Common Sense Strategies for Children with Motor Challenges, including strategies for helping children work through conflicts that occur and create stress for children and families
• Sensory – based strategies for home, school and the community from Diana A. Henry, MS, OTR, to improve children’s ability to function in all environments
• How other parents have met their unique challenges with successful outcomes

This will be a fun, hands-on workshop filled with movement, music, bouncy balls, stretching, pushing, pulling and calming activities to use with children of all ages-including infants, toddlers, preschoolers, elementary-aged children and adolescents-as well as the adults participating. Bring an exercise ball if you can! (optional)

Parent Luncheon: Lunch is on us! Meet with other parents to share stories, resources and get support for your special concerns.

Register by phone: 303.794.1182

Register on line: www.spdfoundation.net/boston2012

Stay for the SPD Foundation 14^th International Symposium on Sensory Processing Disorder Research – March 17-18, 2012! And there’s still more…

You certainly won’t want to miss out on an evening of sidesplitting humor with the internationally  recognized, musically talented and hilarious Sarge! Take a break from learning and join us for  a complimentary wine and cheese reception and a performance that will have you laughing until  you cry!

Sarge is a film, television and stage entertainer who has performed worldwide to adoring  audiences. He is also the father of a remarkable little boy with Sensory Processing Disorder. He was so inspired by the work done with his son at the STAR Center, the treatment partner of the SPD Foundation in Greenwood Village, Colorado that he wanted to help change the world for all of those affected by this disorder. Sarge will be donating his time and talent, performing at fundraising events all over the United States for the SPD Foundation.

When: Saturday, March 17, 2012

Where: UMASS Campus Center
100 Morrissey Boulevard, Boston, MA 02125

Time: 5:15-5:45 Wine and Cheese Reception, 6:00-7:00 Comedy Performance*

Cost: Free for symposium attendees!

$25 for general public or guests of symposium attendees

Registration: Must register for the Boston comedy event through the symposium registration site.

http://www.spdfoundation.net/boston2012/

She came in, put down her things and I made her a late dinner. As she finished, I said to Nick and Matthew, “Boys, go upstairs and get in the shower/bath, I’ll be right up.”  And off they went.

You might think I am crazy to send my 6 and 8 year old upstairs to get themselves into the bath routine, but since we’ve been doing this routine for their ENTIRE lives, it is something they have done successfully on more occasions than I can count.

Usually, Nick heads upstairs, to my bathroom where the shower and bathtub are next to each other, runs his shower, runs his brother’s bath, and by the time I get upstairs minutes later they are both getting naked and entering their respective bathing locations.

That’s what I expected on that evening as well. But it’s not what I got.

As I gathered my friend’s daughter’s things, including her plate and a glass of water, I instructed her to grab her smaller suitcase and start up the stairs. I followed her. Once I made it 4 stairs up, I could hear water running.

….but it wasn’t coming from my bathroom.

“Move out of the way!” I commanded as I began taking the stairs 2 or 3 at a time. I barreled upstairs and into our hallway, following the sound of running water – not the sound of a bathtub filling, but closer to the sound of a fountain – all the way to the hall bathroom.

I looked at the door, which was ajar about 3 inches and was shocked to find it was covered from top to bottom with dripping water. Oh Em Gee. If the outside of the door looked this bad, what on earth would the inside look like?

I pushed it open, and there in the center of the bathroom, happily dancing in about an inch of water, while being sprayed by no less than three streams of six foot high water spray coming from the faucet (which had been turned into a fountain by wedging an empty shampoo bottle into the sink and then turning the water on full blast) were my two sweet young sons buck naked.

They stared at me.

I yelled.

They looked confused.

“Oh my god you guys!! What is going on?!!”  I yelled as I covered my head and entered the water-war-zone getting sprayed from every direction. “Turn that off!”

They just stood there, eyes wide, mouths agape.

I bum rushed the faucet and turned it off. Once I did so I am clear that the room is not only flooded, every surface from floor to ceiling is dripping in water.

At this point I take a closer look at my sons because for the life of me I cannot figure out why or how they thought this was a good idea. Even if they did when it started, how could they possibly have let it continue?

I first take stock of Nick – who is my sensory avoider – and I am overwhelmed by the fact that he is just standing there, naked, facing the shower, which is also running, while putting on goggles to protect himself from the spray. Smart to use goggles, great self-regulating, and excellent problems solving, but if he is putting on goggles – HE KNOWS THAT THE BATHROOM IS FLOODING.

Then I look carefully at Matthew – who is definitely a seeker and a huge WATER seeker at that – and see an honest look of surprise that the water fountain he has created does not impress me. Because clearly, he is impressed with is handy work.

“Turn off the shower Nick. And both of you go to your rooms; you’re not showering tonight, just get your pajamas on.”  I order.

They both look bummed.

It takes me 12 towels to soak up the water, the entire time I am complaining and swearing under my breath, but thankful the lake in the bathroom didn’t penetrate into the hall carpet…too far.

Once the bathroom is dried to a level of dampness that is acceptable, I go to talk with my boys.

“Nick, what were you thinking? Were you just going to get in the shower while the water was spraying everywhere and flooding the bathroom?!”  I shoot at him while he lies on his Star Wars sheets reading a book in his underwear.

“No, I was just about to turn it off.” He says matter of factly.

I’d like to scream at him, because his ‘just about to’ lasted at least five minutes judging by the water level on the floor, but instead I realize that my darling son has ADHD. Why does that matter? Simply because he probably was ‘just about to turn it off’ a dozen times during those 5 minutes and got distracted by the fact that he was supposed to be getting in the shower – so, he never did it.

I just sigh. Give him some tips on prioritizing (for example, “Anytime a room is flooding and you’re in it, the first thing to do is turn off the water.”), being responsible, and then conclude with the fact that I’d like him to continue to read until bedtime.

Next I go to talk to Matthew.

“Matthew,” I begin, walking into his room careful to avoid the Lego land-minds that cover nearly every square inch, “What were you thinking?!  You flooded the bathroom!”

“Oh, well, first I got an empty shampoo bottle, and I was going to fill it up, so I put it under the faucet and turned it on….” He begins with Aspergers-fueled details. But I stop him.

“Ok, yes, I see that you had put the shampoo bottle in there, but once it started spraying the room then it was full –you have to turn the water off.”

“Ah,” Matthew responds with the same air I imagine most scientists have when they’ve discovered something new, “but why?”

And now although I want to yell at him, instead I realize he has Aspergers. Why does that matter? Simply because he was following his own agenda, exploring (yet another) way water works, and learning about his environment. I realize he was observing the situation so he could intentionally gather data.

I just sigh. Then I begin explaining about the volume of the shampoo bottle, the way the running water exceeded it, and how the pressure of the incoming water into the already full bottle was creating the spray. We talk about other fascinating aspects of water (including the water cycle; evaporation and condensation and how the water in the bathroom wasn’t ever going to evaporate entirely and that the water from the faucet was indeed condensating on the ceiling and walls), and I tell him to continue playing Legos until bedtime.

I shut his door, and go to check on my friend’s daughter. She is happily reading in her room un-phased.

And I’m struck by a crazy thought:  Why am I the only one who seems to have a problem with this?!

I laugh, inside, and outside just a little, and then allow myself to let it go. Let go of the fact that my kids aren’t typical in any way, and with that it allows me to let go of the expectation that I should be upset.

My kids are awesome… water fountains and all.

HARTLEY STEINER lives in the Seattle area with her three sons. Hartley is the award winning author of the SPD Children’s book This is Gabriel Making Sense of School and Sensational Journeys as well as the founder of the SPD Blogger Network (www.spdbloggernetwork.com). She is the contributing writer for the SPD Foundation’s blog, SI Focus Magazine and Autism Spectrum Quarterly, among dozens of other online websites and blogs. You can find her chronicling the never ending chaos that is her life on the blog Hartley’s Life With 3 Boys (www.hartleysboys.com) and on Twitter as @ParentingSPD. When she isn’t writing, or dealing with a meltdown, she enjoys spending time in the company of other adults preferably with good food and even better wine.

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