Transitional Tuesday: An Interview With Dr. Lucy Jane Miller

As you all know, our main theme for the month of August, both on the blog as well as in our newsletter, is “Making A Difference”. And who would be more suited to Feature our theme for this month than Dr. Lucy Jane Miller.



Most of you know Dr. Miller through the phenomenal research she has been doing through the SPD Foundation as well as the wonderful work she does through the STAR Center. I have been touched personally by many of the things this amazing woman has done, most recently being connected with our fantastic OT, Kathy, who was trained at the STAR Center! What better credentials can you get than that unless your child was seeing Dr. Miller herself?

I was going to save this interview for Sensory Awareness Month in October but Dr. Miller has several upcoming workshops and seminars in September that I thought you may all want to know about. If you have time or are able to get to any of these events, I highly recommend doing so.

We’ll be featuring this interview again in October to kick of Sensory Awareness Month because Dr. Miller’s information, tips and suggestions are so important. I’m honored to have her here and hope you are as touched by our chat as I was.

CHYNNA: For those readers who may not be aware of the phenomenal things you have done, would you mind giving us a little bit of your background?

DR. MILLER: It's funny how where I am now, directing the STAR Center in Denver has all grown from seeds planted over 35 years! I started as an Occupational Therapist with a sensory integration therapy frame of reference in Head Start and in an Early Childhood Program, consulting and working with the teachers in the classrooms and doing home visits for children birth to three. My goodness that was a long time ago! Even then I was asking questions and making trouble for those happy with the status quo! It was on my opinion that children were put into the "special education" Head Start classrooms. I was using a test but over time I saw that the test was very inaccurate. That's when I started to develop the Miller Assessment for Preschoolers (MAP), which turned into my first nationally standardized test for children. (Now I have authored 9 norm-referenced standardized scales.) That was 35 years ago, and the rest is a long (and to me interesting journey) but perhaps best left for a radio interview (or a novel!).

CHYNNA: Thank you for sharing all of that. Not many people may remember that you actually started as an occupational therapist, working with children just like ours! (For the record, I’d be first in line for that novel!) Now, you trained with Dr. Jean Ayres, the ‘pioneer’ who brought SPD into the spotlight. What was that experience like?

DR. MILLER: Dr. Ayres was a brilliant scholar, a gifted clinician, and a role model for research. She taught me many things but the most important was this: Question everything and everyone. Never believe what you read. Read down into what you read to make sure it is reliable and valid. Ask questions. She said, "Question me, Lucy...and question yourself. If you can't ask questions, you'll never be a researcher." I'm very proud that my certification # is 10!!

CHYNNA: That truly is an amazing thing to have been #10! And what great Dr. Ayres gave you about questioning everything. I’m going to add that one to my on-going list of ‘Great Inspirational Quotes’. Drawing from your experiences, both as an OT as well as today, what do you think are the most important things caregivers of children with SPD to know?

DR. MILLER: Parents and other caregivers need to trust their instincts. If they think something is "wrong" with their child, they are probably right. Don't accept what a professional tells you if you know it isn't 'right. Get a second opinion. Make sure you know what you are treating before you spend a lot of money "fixing" it. Make sure any professional you work with, or who works with your child, has specific short-term goals that YOU understand. Not some jargon-filled list of developmental milestones, but real functional goals.

And above all else, remember you are the child’s Mommy or Daddy or Nana or whatever. Your job is to play with your child every day. Down on the floor play, eye-to-eye, cheek-to-cheek; your job is not to complete a home program someone else thinks is critical. Children learn from the platform of the caring, trusting relationship they form with their parents. Everything else stems from that. So make that your priority . . . play and enjoy yourselves.


CHYNNA: You actually made me tear up because we had a tremendous amount of hurdles just getting one of those professionals to listen to our concerns. Now there are so many resources ‘sensational’ caregivers have access to we didn’t have at the beginning stages of our journey. The one thing I’ve always done is played with and loved my sensational kids. That simple thing just seemed to work! I hope caregivers take your words to heart and keep them close. One of your biggest campaigns has been getting SPD included in the DSM. Why is this quest so important? How will this benefit caregivers?

DR. MILLER: Most people have no idea how important this is, Chynna. There are even people who are against this campaign. They don't want SPD to be a "mental disorder." But perhaps they don't realize the DSM includes learning disorders, motor disorders, communication disorders, social disorders, cognitive disorders and so on. We have to get a diagnostic code. Until then: a) our researchers will not get big NIH funding because SPD is "not a real diagnosis" and b) our families will have trouble getting reimbursement for therapies. It is a big deal, probably the most important legacy I can leave. Those who are "against" it will benefit as much as those who are neutral. But if everyone were to get behind the movement we would be unstoppable. Look what the parents of children with autism have accomplished! They are our role models. Each and every person can make a difference. We are up against an establishment that has deep roots, and prejudice dating back forty years. However, we have the ultimate weapon now; data. Data showing SPD is a valid disorder and that treatment works. (See www.SPDFoundation.net and click on "our library" to see articles on this topic).

CHYNNA: Thank you so much for discussing this with us, Dr. Miller. I don’t think I fully realized the importance of this campaign until I had to fight just to have people ‘see’ what we did with Jaimie…just to get guidance, advice, assessments and recommendations for the right treatments for her. Now that we finally have access to these resources, I make sure I tell everyone out there about what you’re doing and why. I hope our readers go to the SPD Foundation and read the articles there. To raise awareness, we need to understand ourselves. Then together we can make it happen. While we’re on the subject, what can we do—as caregivers, as a community—to raise awareness for SPD?

DR. MILLER: There are many things you can do ... You can either join an SPD-Parent Connections group or become a host if there isn’t already one in your area. Our PC-Connections groups are in more than 70 U.S. communities and several foreign countries. SPD-PC groups provide support and information to anyone dealing with sensory processing issues. Group discussions, education, resources, and guest speakers hosted by SPD Parent Connection groups give parents, grandparents, caregivers, and others living with sensational children a place to share stories and resources and to support one another. More information is available at http://www.spdfoundation.net/families.html.

And of course as we celebrate our 30th anniversary this year we are asking people to organize “Sensation Celebrations” or “30 for 30” events to raise funds to continue our efforts toward diagnostic recognition of SPD in the DSM-5. We have all the tools imaginable to help you organize an event from forms to flyers and sample letters to send to sponsors. Everything you need you can find at http://www.spdfoundation.net/2010organizer/.

We also have great downloadable flyers to print and distribute to family, friends, teachers, etc. that will help explain what SPD is and how they can support your child. These are located at http://www.spdfoundation.net/flyer.html.

CHYNNA: Fantastic!! There really are so many things we can do. And we don’t need to go out and do something on an International level; we can just raise awareness in our own communities. That’s a wonderful place to start. Thank you for the links, Dr. Miller. There are still so many caregivers struggling or fighting to get the right diagnosis and treatment for their children because there are folks who still don’t (or won’t) acknowledge SPD. Why do you think this is still happening?

DR. MILLER: Chynna, there are leapers and creepers. The doctors trained in the 70s, 80s, and 90s are right about one thing: the research on SPD conducted then was not compelling. In a way it’s not their fault. It’s hard to keep up. We have to have a sort of revolution to change thinking in this area. What Kuhn called equipoise. There has to be a shift in overall thought in the general public, or among professionals and parents who care about this area. We are like at a "tipping point."

Chances are pretty good that doctors and educators trained a few decades ago haven't seen the new research such as our two part series in Brain Research (a really good journal) showing brain differences in children who are typically developing compared to children with SPD. There are lots of other new compelling studies too. When I teach our mentees (professionals who come for our one week advanced educational experience) and after I review the top 10 new peer-reviewed publications on SPD, I tell them, next time someone says "There's no research ... just say to them: oh that's just so 80s!"

CHYNNA: I LOVE that! And you are so right about there being leapers and creepers. Our Pediatrician was a creeper. But he’s finally getting on board with us. Okay, I’d love to hear your insight on this: parents have just found out their child has SPD. What are the top things they should do to get on the right ‘sensational’ track?

DR. MILLER: First of all, if they have just found out they are probably not reading this as it takes awhile to get into the web info. But just in case, here goes:

Parents: The first thing is to try to hook up with another parent who has been through this whose child is similar to yours. You will find that other parents are often the best source of information.

The second thing is to have a top-notch professional multi-disciplinary evaluation. Make sure the diagnosis is right, or the treatment may not work. Make sure that a qualified professional who also knows about (and believes in) SPD rules out autism, ADHD, OCD, and other diagnoses. Or perhaps suggests a dual diagnoses (ADHD + SPD). Dual diagnoses are very common. But you have to get an accurate diagnosis to know what to do next.

Third, find a professional you can trust. One who is parent-centered, whose philosophy is to teach you everything they know. They might be an OT, a MD, a SLP, or someone else who can help YOU make the best decisions for your child and family. Make sure you know what is happening; do not give over decisions about your child to professionals. Find a professional who allows you to come into the treatment sessions, helps you to set realistic goals, and teaches you so that instead of a home program, you know what to do in real life situations.

There is so much more, hard to write this all down! I have a good chapter on this in my book, Sensational Kids.

CHYNNA: Thank you so very much for all of this, Dr. Miller. We didn’t realize the importance of dual diagnoses and/or ruling out ASD until my Xander. This is a brand new journey for us. Do you, or the Foundation, have any upcoming events we need to know about?

DR. MILLER: We do have a few events to tell you about. If you happen to live in Denver, we will be having our 30 for 30 event on September 23rd at Chez Cirque dueling piano bar in the Denver Tech Center Landmark. We will have happy hour priced cocktails and free appetizers from Lime from 6pm-7:30pm. The entertainment will be amazing with performances by Coles Whalen, then the dueling piano players, and then a DJ for Ladies Night. All of this for only $15!

Oct 2nd is our Sensation Celebration event. This is a live “Ask Dr. Lucy” webinar that anyone in the world can attend whether or not you go to an actual event for it. Check our anniversary page on our website for more details on how you can gather your friends and family and tune in. More details to come at http://www.spdfoundation.net/celebration2010/index.html.

I will be speaking at the ICDL conference in Washington DC on Nov 5th and then our 11th annual International SPDF Symposium and Pre-Conference Institute will be in Seattle the following weekend, Nov 12-14. We have an outstanding line-up of speakers for this conference and two separate tracks for parents and professionals! More information located at http://www.spdfoundation.net/symposiumseattle/index.html.

CHYNNA: I’m looking forward to the “Ask Dr. Lucy” Webinar. I encourage our readers to get to a seminar or the Symposium if you have the chance. What a phenomenal opportunity. As we come to a close, I would love to hear your final pearls of wisdom for our readers.

DR. MILLER: There is help and hope for children with SPD and their families. You are not alone. Join us in our efforts to help you and others like you. Your efforts in our effort will come back manifold by way of learning how you can help your child. Sensational kids are just that ... sensational! Differently able! They are our future so lets get together and make a difference for them.

Thank you for this opportunity to talk to parents, Chynna.

Lucy Jane Miller
August 13th, 2010



I’m honored to have had Dr. Miller join us for our August issue of “The Gift”. I don’t think I’d be where I am right now in our ‘sensational’ journey without her efforts and the incredible work she and her research team are doing through the SPD Foundation. I thank her so very much for being here, for sharing her insight and for continuing to give us hope. Please do check out all the links Dr. Miller has shared and, as I said, we’ll be sharing this interview again over at “The Gift” blog at the end of the month so watch for it and share it with any ‘sensational’ caregiver you know who needs that inspiration.