A couple of years ago, just before Jaimie’s diagnosis, we were given a wonderful movie called, Pooh’s Grand Adventure. I’ve always loved Winnie the Pooh movies because they are filled with hope, love, friendship and other important life lessons presented in a gentle, kind way. In this particular movie, a quote from Christopher Robin always sticks out in my mind:

“You are braver than you believe, stronger than you seem and smarter than you think.”

That seemed to be just the right phrase for a “sensational” child. In fact, I wrote that phrase out, framed it and hung it in Jaimie’s room. I read it to her on the days she struggles the most. I don’t think I fully appreciated these words, though, until recently.

A couple of weeks ago, my son, Xander, was officially diagnosed with Sensory Processing Disorder. Now, the diagnosis itself wasn’t a shock for me. I’ve known since he was born—as I had with Jaimie—that he had issues. It was the severity and complexity of Xander’s issues that shocked me.

My little guy, in addition to his sensory issues, has many developmental delays. His situation is complex because his therapists aren’t sure what is causing which delays or even what the base problem is. He’s going to need a tremendous amount of therapy and assessments until we figure out how to truly help him. I knew he struggled but not to this degree. I cried as the OT and Psychologist explained to me that we’ll have a long road with him. The road for Jaimie’s journey has been a long, bumpy one; in fact, we still have a long way to go. And now my beautiful boy has begun a journey of his own—and I have be there with them both .

Was I strong enough to handle two “sensational” kids? How could I bear starting all over again, not only finding Xander’s “happy equilibrium” but balancing it with Jaimie’s? And would I be able to cope with both of their very high needs while giving mommy love to my other two beauties? For two days I walked around in a daze wondering how on earth I could do it then I walked into our occupational therapist’s office the first day of Xander’s therapy and I felt like a balloon that had been deflated.

Suddenly it dawned on me: I had already been “doing it”:

You are braver than you believe: I already had all the information under my belt with what we’d gone through with Jaimie. I read books, did research, interviewed experts, spoke up, reached out and advocated. I’m already miles ahead in Xander’s journey because I was brave enough to pound the pavement and get help for Jaimie, even when people wouldn’t listen to us.

You are stronger than you seem: I’m a firm believer that we aren’t given any more than we can handle. I never thought about “I don’t know if I can…” I just did. I’ve never seen myself as “strong”, merely doing what had to be done. That’s what we “sensational” caregivers do. Even on those really tough days filled with sensory meltdowns, people who don’t understand our kids, fighting just to get our kids their basic needs met, we move forward. We have to. I had already been coping with Jaimie’s SPD, her therapy, the school system, teaching her teachers how to teach her and her friends how to befriend her. And those experiences, and the steel-strong mini-support system I have in place, make me strong enough to help Xander and Jaimie and my other two children.

You are smarter than you think: Everything I went through with Jaimie helped me to “see” that Xander’s struggles were more than him copying his older sister. It helped me know the right people to talk to in order to get on the path with the shortest red tape—and a lot sooner than it had been for Jaimie. I knew, despite not being believed (again!) that Xander was having more than just a “little speech problem he’ll get over” and to get going as early as possible to help him. I was smart enough not to allow the same barriers we had with Jaimie jump in front of us with Xander.

The most positive thing—if you want to look at it this way—about our situation today is that because we have two children with such high needs, we finally qualify for assistance, funding and resources we couldn’t access before. It saddens me that we’d gone so long with basically nothing for Jaimie—we did it all on our own. But now I can help both of my children. And that’s phenomenal.

I’m out of my daze now and feeling much more positive about our situation. I’ll keep moving forward on each of my children’s “sensational” journeys, with my other two children alongside us. No, it’s not going to be easy. Yes, I do anticipate there being many more bumps and hurdles along the way but we can handle it. And so can you because you are braver than you believe; you are stronger than you seem; and smarter than you think.

(If you don’t believe me, just talk to that silly old bear!)

CHYNNA TAMARA LAIRD lives in Edmonton, Alberta with her partner, Steve, and their three daughters [Jaimie (seven), Jordhan (five), and baby Sophie (twenty-one months)] and baby boy, Xander (three). Her passion is helping children and families living with Sensory Processing Disorder and other special needs.

Her publications include the children’s book (I’m Not Weird, I Have SPD), a memoir (Not Just Spirited: A Mom’s Sensational Journey With SPD) and a reference book about the Sensory Diet (coming January 2011).  Visit Chynna’s website at www.lilywolfwords.ca, as well as her blog at www.lilywolfwords.blogspot.com.

Hey Denverites!

Pasquini’s Pizzeria just opened a new location in the Denver Tech Center and they are hosting a great benefit for the Sensory Processing Disorder Foundation. On the evening of August 25th, 2010 from 5:00pm-9:00pm, Pasquini’s will donate 20% of their sales to the SPD Foundation. So, if you’re able to stop by for a bite to eat, you will be helping children and families who suffer from Sensory Processing Disorder.

Just tell the wait staff that you are there for the SPD Foundation when you arrive for your meal and the Foundation automatically benefits. What could be easier than eating great food and knowing that you’re contributing to a great cause?

Please join us on August 25th and feel free to invite others too. If you can’t stay, order ahead and take it to go. Even gift card purchases are included in the donated sales that evening.

We hope to see you there!

8101 E. Belleview Ave., Denver, CO 80237

Main line: 303-770-3100 Catering: 303-282-4709

To order gift cards, please call Rachael Fry at 303-282-4709.

Before I ever got a diagnosis of any sort for my son Gabriel, I think everyone I knew had told me some version of the line, “It will get better”. I knew they all meant well, but I wasn’t dealing with your run-of-the-mill toddler tantrums with Gabe. Not even close. My son had meltdowns. Big, long, scary and excruciatingly loud, meltdowns. Gabe would cry for hours on end, for no apparent reason and crashed into walls for fun; this wasn’t typical development in my book, and I couldn’t understand why people were so quick to dismiss it with any of the old standbys (”He’s just a boy” or “He’ll grow out of it” or the non-committal, “It will get better”). How could people think that it would just get better? I wanted to believe them, I really wanted to, but I had lived with the “out of sync” behavior for years, with no sign of it letting up, so I wasn’t convinced that my son would just magically “get better” one day.

When Gabriel’s diagnosis came in at age 4 as Sensory Processing Disorder, I was so relieved that I finally knew what was going on, that I steamed forward – full speed – through OT and implementing a sensory diet at home and school without so much as taking a breath. If that was what my son needed then that was what I would do for him. After all, this is what would finally make things “get better”‘, right?

But you know what? It wasn’t easy and it didn’t just “get better” as quickly as I was hoping. I was tired of being told by family, friends and therapists that things would “get better”. Did these people really understand what I went through every single day? Did they understand how upset my son was over the smallest things? How hard school was for him? How hard having play dates was? How difficult it appeared for him to enjoy the simplest pleasures of being a child? If things were really going to get better, could they PLEASE hurry?

Then one day, about a year after Gabriel’s diagnosis, I was just exhausted – the kind of exhausted that only a special needs mom can relate to. This particular day was not really all that different from the hundreds before it; Gabriel, at almost 5 years old, was having the umpteenth meltdown of the day over some perceived infraction on the part his two year old brother, Nick, who sat statue still watching him yell and throw things while I held my 3 month old tightly to my chest shushing and pacing with him because he hates loud noises. That was my breaking point. I needed things to “get better” and I needed them to do so immediately.

I flashed on meeting a fellow SPD mom at the OT’s office the week before and decided I needed to talk to someone who understood my life in a very real way and could provide testimony that the elusive “it gets better” truly existed.

I riffled through my purse in the garage to find her name and phone number scribbled on the back of a deposit slip. She said I could call her any time. What did I have to lose? I dialed the number and was beyond relieved when she answered the phone. We ended up talking for over an hour – OK, I did most of the talking and all of the crying, but it felt great. At the end of the conversation, she quieted her voice, and in a tone so genuine and true, calmly said, “Keep doing what you are doing; it gets better.” And I actually believed her.

I believed that if she had survived this journey of Sensory Processing Disorder that somehow, some way, I would too. That my life wouldn’t always be chaos and meltdowns, that somewhere in my future there would be a family meal that we all sat through (not to mention ate), that there would be fun family vacations and maybe even a day I didn’t plan down to the minute. I was optimistic.

As shocking as it is, she turned out to be right. Today Gabriel is 9 years old. He self regulates and self advocates at school, he pushes on the walls without being told, he willingly takes the trash out for heavy work, and often volunteers to take “quiet” time when he is overwhelmed – both at home and at school. He has an arsenal of chew toys and fidgets to keep him focused and calm him when needed. And perhaps most impressive, Gabriel has generalized those skills and can choose to do virtually anything he wants – wear special clothing for special occasions, including “cleats” for football and a tie for holidays. He can tolerate gel in his hair for ‘crazy hair day’ and wear makeup on his face for Halloween. He can attend a jump party without covering his ears and even takes his heavy blanket with him to the movie theater, ‘just in case’ he needs it. Trust me when I say that this is LEAPS and BOUNDS from where we were just a few short years ago.

So today, as many of you are reading this, and are probably living that same sense of crisis between diagnosis and “It gets better”, I want to assure you that your dedication to your child’s sensory diet, to their continued therapy appointments and to all of the millions of things you do every day to help teach your child to live in this often overwhelming sensory world of ours, will pay off, in spades. Or to put it simply: It will get better.

HARTLEY STEINER lives in the Seattle area with her husband Jeff and their three sons: Gabriel, Nicholas and Matthew. After taking placement of her oldest son Gabriel in 2002, the adoption process was finalized at last in 2005 completing her family. Gabriel struggles with Sensory Processing Disorder, High Functioning Autism, Bipolar and Learning Disabilities. His adoption opened a new chapter in Hartley’s life leading her to become a dedicated advocate for all children with special needs. Hartley is the author of This is Gabriel Making Sense of School, a contributing writer at Grown In My Heart, and even squeezes in organizing a local support group for families with Autism near her home. Hartley also chronicles the never ending chaos that is her life on the blog Hartley’s Life With 3 Boys and started the SPD Blogger Network. 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. You can follow Hartley on Twitter: ParentingSPD.

My best friend had been staying with me while recuperating. He recently had a very scary hospital emergency involving the rupture of an artery in his nasal sinus. Very early one morning, he had another bout. After getting him into the ambulance, I came back into the house to wake up my daughter and get her off to school. She was unaware of what was going on and I didn’t want to tell her. She cares very deeply about him as he has been like a second father to her. I didn’t want to worry her.

My daughter had gotten home late from her mother’s the night before and is one of those kids who needs more than 8 hours of shut eye to start off the day. If she doesn’t get the rest she needs, watch out. Couple this with the fact that although she was doing fantastic academically, she was having huge issues with fitting in socially with her peers. There were times when I have to be very gentle with her in our morning routine, just to get her into school.

So, I was extremely torn this morning. On the one hand, I wanted to get to the hospital to be there for my “Brutha From A Nutha Mutha”. On the other hand, I wanted to get my daughter started off in a positive way. Once I woke her up, I knew that it would be an increasingly challenging morning. She was whiny and angry, not a good combination for the start of the day. And, I think she was in tune with the fact that I was nervous and anxious.

I left the room to call the hospital for an update and came back to find that my daughter had torn through my closet and thrown all my clothes into the living room. She had gotten upset that I was temporarily using her play room as my sleeping area while my friend was staying with us. She hadn’t expressed this feeling before and had chosen this particular moment to let it all hang out. Oh joy.

Count, 1, 2, 3… Breathe, Craig, breathe…

My gut reaction was to go ballistic. But, I knew from experience that would ratchet things up to an impossible level to handle. Experience has taught me what I never dreamed possible… I can remain calm in the face of a storm.

I calmly started putting my clothes away and noticed a little shy face peering at me from behind the door. The look on this little face was sad, sorrowful and a bit scared. I interrupted my cleanup to sit down on the floor and talk with my little gremlin about good ways to express anger and not so good ways to express anger. And, that this was not a good way to express anger… Long story short, I was able to get through the moment and get my little helper to finish the cleanup.

We got to school without further incident and I was able to get to my friend. He is fine now and I don’t need to go further in detailing that tribulation.

The bottom line is that we, as caregivers for our sensational children, have a tough road to hoe. And, we deal with things that most people can’t comprehend. Am I perfect? No freaking way! I make huge mistakes and it has taken me years to get to where I’m reasonably capable of handling things — most of the time. We all need to take a moment and pat ourselves on the back for what we accomplish.

And now, for the rest of the story and some tips.

********

If you are like me, you have had a tremendously difficult time with this experience. When my daughter gets overwhelmed, she goes right into “fight or flight” mode. With her it is usually “flight mode” and it is extremely dangerous. It’s much better now and rarely occurs, so this is one of our “Many Blessings”.

There have been times where I have had to:

• Call security at a hospital after she ran away (she got upset during a counseling session – dear God), • Run after her, screaming at the top of my lungs for her to stop, as she ran towards a very busy street, • Pull the car over when she tried to exit while we were on the freeway.

This issue has also occurred at school and the police had to be called to track to her down — double oy vey!

My daughter doesn’t intend to do this on purpose; she has a neurological issue that makes it difficult for her to handle stress and situations where she gets overloaded. Recognizing this fact has been the first key to helping her.

Here are some suggested tips that I’ve found through other websites and books and through simple trial and error:

• Number one: if it’s an emergency — do whatever it takes to make sure your child is safe. Do not worry about what other people think — just do it! (No, I am not advocating excessive force).

• Number two: seek professional help – your child may not have any control over this.

• Number three: know your child and what his/her triggers are. Share this information with administrators, teachers, coaches and whoever may be responsible for your child.

• Number four: set firm rules and appropriate limits/boundaries on the absolute critical issues. “Run to a safe place – do not run away!”

• Number five: role play and practice the, “What should I do if…?” scenarios with your child. Practice relaxation techniques. Practice, practice, practice…

• Number six: get below the level of your child (sit down on the floor) so that you are no longer a threat to him/her. When my child is on sensory overload, she is frightened, getting down below her level has usually worked in calming her down and reducing the “threat” that I pose to her.

• Number seven: rewards, rewards, rewards and PRAISE when your child has a success in this area.

• Number eight: take care of yourself, be gentle with yourself and remember that there is no “how to” manual on this — we learn as we go.

• Number nine through???: for you to add or edit. I am no expert and you know what works best with your child. Please share with us…

Look at How Far She Has Come…

I think one of the more difficult challenges that we have faced in our journey with Sensory Processing Disorder has been a battle with intense anxiety. I’m talking anxiety levels that take over and control life, preventing enjoyment of normal activities. An anxiety that prevents sleeping on one’s own and sleeping fully though the night. I’m talking a separation anxiety that prevents becoming independent and prohibits the ability to get out on your own and enjoy life – an anxiety involving school phobia that prevents learning and the development of bonds with peers. And, I have wondered if we would ever get to where life was a little less intense, a little less anxious, and a little more normal.

My daughter recently turned 12. She now sleeps on her own with a simple tuck in and an occasional story. She recently took a trip with her aunt and cousin and came home on a plane, all by herself. She recently had her first babysitting job where she took care of a 5 year old boy who has Autism for 5 hours and did a fabulous job! I think many of you can understand why I feel that those three simple sentences are probably the most important sentences I will ever write. We still have issues with dyspraxia and social skills to some extent due to her not fitting in with peers more than anything else. But, I’m here to tell you that we all just need to “stay the course” and hang in there, things will get better – our hard work does pay off. And, when it does, you will be on “cloud nine”, just like I am…

Many Blessings!

CRAIG WALKER, first and foremost, is the father of a Sensational Kid. He is a part-time wannabe poet, occasional blogger (http://kidsensational.ning.com/) and tireless advocate for special needs kids. His greatest hope is for Sensory Processing Disorder to gain diagnostic recognition in the DSM-5, so that parents of SPD kiddos will have an easier time in getting help for their children. He also is the Information Technology Manager for the Yolo County District Attorney’s Office in Woodland, CA and enjoys reading in his spare time. His favorite cartoon character is “Underdog”.

Parents of children with autism are increasingly turning to sensory integration treatment to help their children deal with the disorder, and they’re seeing good results. In 2007, 71 percent of parents who pursued alternatives to traditional treatment used sensory integration methods, and 91 percent found these methods helpful.

A study from Temple University researchers, presented at the American Occupational Therapy Association’s 2008 conference, found that children with autistic spectrum disorders who underwent sensory integration therapy exhibited fewer autistic mannerisms compared to children who received standard treatments. Such mannerisms, including repetitive hand movements or actions, making noises, jumping or having highly restricted interests, often interfere with paying attention and learning.

The children assigned to the sensory integration intervention group also reached more goals specified by their parents and therapists, said study authors Beth Pfeiffer, Ph.D., OTR/L, BCP, and Moya Kinnealey, Ph.D., OTR/L, from the Occupational Therapy Department in Temple University’s College of Health Professions. The children made progress toward goals in the areas of sensory processing/regulation, social-emotional and functional motor tasks.

Sensory integration is the ability of the brain to properly integrate and adapt to the onslaught of information coming in through the senses. Dysfunction in this area makes it difficult for people with autism to adapt to and function like others in their environment. They may be hypersensitive to sound or touch, or unable to screen out distracting noise or clothing textures. Their response might be impulsive motor acts, making noises or running away.

Pfeiffer and Kinnealey are part of a group of researchers seeking to bring more scientific understanding to occupational therapy using a sensory integration approach.

“It’s been heavily documented that children on the autistic spectrum have differences in the way they process sensory information and respond motorically,” Pfeiffer said. “While more families are seeking out the sensory integration approach because of its positive results, more research is needed to scientifically establish its effectiveness.”

Children receiving sensory integration therapy typically participate in sensory-based activities to enable them to better regulate their behavioral responses to sensations and situations that they find disturbing or painful. A child who is oversensitive to light touch may enjoy rolling and playing in a giant foam pillow, after which he might be more able to calmly explore, touch and play with other textures. This in turn makes self-care such as dressing and washing and classroom activities that require touch more manageable.

Interpreting the child’s behavior as intentional and controllable and not recognizing the underlying cause and hypersensitivities is common in educational and home settings, but is an approach that Kinnealey discourages as stressful for the child.

The study took place this past summer at a camp near Allentown, Pa., for children with autism. Participants were between the ages of 6 and 12 years old and diagnosed with autism or Pervasive Developmental Disorder”Not Otherwise Specified (PDD-NOS).

One group (17) received traditional fine motor therapy and the other group (20) received sensory integration therapy. Each child received 18 treatment sessions over a period of six weeks.

A statistician randomly assigned the participants to groups; this information was provided to the project coordinator at the site. The primary researchers were blinded to group assignment and served as evaluators before and after the study.

Parents were also blinded to the interventions that their children were assigned to and were not on site. However, there was the potential for the verbal children to talk about the activities that they participated in, which may have influenced the blinding for the parents.

For their outcome data, researchers used a series of scales that measure behavior. While both groups showed significant improvements, the children in the sensory integration group showed more progress in specific areas at the end of the study.

“This pilot study provided a foundation for how we should design randomized control trials for sensory integration interventions with larger sample sizes,” Pfeiffer said. “Specifically, it identified issues with measurement such as the sensitivity of evaluation tools to measure changes in this population.

“Sensory integration treatment is a widely used intervention in occupational therapy. There is a real need for research such as randomized control trials to validate what we are doing with sensory integration in the profession,” she added.

The other presenter was Kristie Koenig, Ph.D., OTR/L, Steinhardt School of Culture, Education and Human Development, New York University. Funding was provided by Autism Speaks, which is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism and raising public awareness about autism and its effects on individuals, families, and society.

Printed by Newswise – April 25, 2008

As a dad of a child with Sensory Processing Disorder, it has been a rollercoaster. Things are constantly changing; moving forward and backwards. It is a magical time for parents and I mean that in the most literal way. Behaviors appear and disappear at a fast pace. Just when you think one behavior is gone or has morphed into a new one, it reappears again in a couple of weeks.

As a Dad who works full time, it is easier to see the changes in my son than it is for my wife, who sees him constantly every day. In some ways that makes it even more difficult because just when I think we have turned a corner, something new pops up or an old behavior comes back. My wife has an easier time making adjustments and interventions because of all the work she does talking with therapists, school staff and OT’s. But as a Dad I go at a much slower pace. I usually say, “You mean we are not doing that anymore?” And sometimes the response is, “No, we are doing this now, don’t you remember?” Honestly, usually I don’t remember. However, I am trying to keep up the best that I can.

My son has improved dramatically through many of the interventions we have done. He is a different child than he was a few years ago. I mostly owe that to my wife. She does the research, talks to the professionals, worries about the future, and advocates for him. She can get quite frustrated from all the craziness of figuring out the needs of my son. I am glad I am there to remind her of the changes I see in him everyday. She is the perfect Mom for the needs of my son. I am lucky to have her with me on this SPD journey with our son.

PAUL MANK is a 4^th grade teacher and the father of a child with Sensory Processing Disorder. He lives with his wife and 2 children in Northern California.

An Open Letter to the Respectable Public:

Lately I’ve noticed a few more of your longer-than-necessary glances in our direction when I’m out with my son, Henry. I’d like to say that it’s his magnetic smile and attractive wardrobe, but I’m afraid that’s not always the reason. It seems that my son’s sensory behavior has been capturing a bit more of your attention than it used to. For instance, you look slightly puzzled when he lays down on the booth in restaurants, concerned when he clings to me with his head buried in my neck during fireworks, uncomfortable when he can’t respond to, “What’s your name?” Unfortunately, I don’t often have the time, energy, or relationship to explain to you that he doesn’t like the way his back feels when he sits, that the noise of Independence Day probably makes his head feel like it’s going to explode, and that his tongue and lips don’t often cooperate with his brain.

Perhaps it’s becoming more obvious that something in particular is going on with Henry since he’s looking older these days. No longer a mischievous and understandably crabby toddler, but a tall, almost 3 year old boy headed to…preschool?

Frankly, I myself am a woman who deep down prefers to be admired and understood, heck, ignored rather than critiqued, so this is understandably unpleasant. You see, good people of the public who perhaps wisely raise an eyebrow at me, the mother who can’t or hasn’t or doesn’t care to teach her child proper manners, I’ve got a great narrative to share if you let me explain. I could tell you about the swell of my heart to the point of stretching and breaking that happens darn near every mealtime, bath time, car ride, and bedtime. I could tell you about how many referrals, doctors, tests, and insurance journeys I’ve traveled barefoot and thirsty. I could tell you about fears and worries and missed appointments and missed milestones. I’ve got a really good story.

So while part of me wants to explain all this so you won’t judge or hide out at home so you won’t notice, instead I’ll try to focus on us. And the way his father and sister cheer and jump up and down when he eats one bite of hot dog or gets a word just right. And the way he responds to praise, parading like a peacock when he successfully completes a puzzle. And the way that the struggles have brought us all nearer in spirit to each other and to those who love us.

So, upright citizens, it actually isn’t that significant or important to me that you understand this, but my kid’s not misbehaving. He’s doing his best to figure out this world and sometimes it seems like I’m right there with him. I’ve got a really good story because it’s both an adventure and a love story. And, as I’m sure you know, all that matters for a good ending is that the main characters never give up on each other.

Yours truly, Mom

SALLY works in California politics and lives with her husband and two young children. She writes about the good and the bad as her family loves and learns on HenryInParticular.blogspot.com. Her hope is that other parents of kids with Sensory Processing Disorder will feel known as they read her writings while sharing in the tenderness and laughter of the journey. Sally also enjoys fashion, food, and all things California.

Join us for our first ever West Coast International Symposium! This will be an extraordinary event featuring expert researchers and clinicians. The speakers will engage in “New Conversations” about children with Sensory Processing Disorder and other developmental conditions with co-existing sensory issues. Two tracks will be offered; one for parents of special children and one for researchers/advanced clinicians. The emphasis in this long-awaited conference will be new information on research, treatment, and parenting strategies. We hope to encourage “out-of-the-box” thinking and conversations as a result of this conference.

Presentations by:

Drs. Brock and Fernette Eide

Dr. Stephen Glass

Ira Glovinski, PhD

Diana Henry, MA, OTR

Lucy Jane Miller, PhD, OTR

Dr. Ron Minson

Sarah A. Schoen, PhD, OTR

Barry Stein, PhD

Rosemary White, OTR

And many more ….

Register now to take advantage of our early-bird pricing!

Location:

The Westin Bellevue

600 Bellevue Way NE

Bellevue, WA 98004

425.638.1000

Reserve a room at the special SPD Conference rate.

Hi all!

I’m back from a very very very (did I say VERY?) hot trip to NYC! Success on several counts! A wonderful rendezvous with John Foxe and Sophie Molholm, members of our Scientific Work Group who have moved to Albert Einstein College of Medicine, Yeshiva University where they have been given an amazing new suite with all sorts of equipment and space to study multisensory integration. We are just so delighted to have them on the Sensory Processing Disorder Scientific Work Group! I gave a presentation that was supposed to be for a few folks in the lab and turned out to be for about 100 people at the Children’s Evaluation and Rehabilitation Center which included many physicians. There was a very warm reception to the information.

Second, the Science Writers in New York (SWINY) group met. I arrived completely drenched from a sudden rain shower in which I was trying to hail a taxi! The talks were supposed to be 10 minutes long. I showed a 1-minute video to set the tone of the “story” and then about 15 slides of our research and findings from members of the Scientific Work Group. Can you imagine condensing the incredible amount of information we have gathered into the 9 remaining minutes?

The audience was full of questions, and we had a lively discussion with Dr. Shaffer, who is Professor of Psychiatry and Pediatrics, and Chief, Division of Child and Adolescent Psychiatry, Columbia University Medical Center and even more important to our mission, chair of the Disorders in Childhood and Adolescence Work Group (e.g., dealing with ADHD and related disorders) for the DSM-V. He was talking mostly about what the Diagnostic and Statistical Manual (DSM) is all about and the disorder he is trying to see included which is related to non-suicidal issues in teens (basically cutting and other self-mutilation activities).

We also were very interested to hear from Dr. Andy Shih, who is Vice President of Scientific Affairs at Autism Speaks, about the reasons Asperger’s is suggested to be withdrawn in favor of a more general category called “Autism Spectrum Disorders.” Finally, we were joined by Jennifer Brout, a psychologist and mother of a child with Sensory Processing Disorder, and her daughter, Emily, who talked in public for the first time about what SPD meant to her life.

Dr. Shih was very understanding and supportive about our work and discussed the importance of continuing our advocacy for SPD. Dr. Shaffer explained that in the last version of the DSM (DSM-IV) decisions were made based on a model described by Robbins and Guze (see article). He thought we might be going by that older model. He said that for the DSM-V, however the model was different and based on a more global approach. He was giving us advice about what the committee was looking for in applications for new conditions, which he noted were primarily global clinical behaviors that were different than other conditions. He indicated that biological factors were not as important, but I’m not sure that reflects the thoughts of the whole committee. I noted briefly the types of behaviors that children with SPD (sensory over-responsivity and sensory under-responsivity) have, and he seemed interested. I was glad to see him pick up a copy of all the journal articles that Ann Marie (from Science Friday) had copied for the crowd.

All in all it was a very successful trip and a great opportunity to meet with leaders from the DSM committee and from the Autism community!

[1] Robins E. and Guze S.B., (1970).  Establishment of Diagnostic Validity in Psychiatric Illness: Its Application to Schizophrenia.  Am J Psychiatry 126:983-987 doi:  10.1176/appi.ajp.126.7.983

LUCY JANE MILLER, PhD, OTR, is the founder and executive director of the Sensory Processing Disorder Foundation, a world leader in research, education, and advocacy for Sensory Processing Disorder, a neurological condition that disrupts the lives of many children and adults. Dr. Miller also directs the STAR (Sensory Therapies And Research) Center where children and adults with SPD are assessed and treated.