Finding the Right Provider

I was recently asked by the Rochester Regional Center for Autism Spectrum Disorder (RRCASD) to write an Information Sheet that helps to address a very important question:

What do I do now?

This is a question I often faced in diagnostic clinic when a caregiver receives a diagnosis and is feeling uncertain about what to do next. As part of the diagnostic process, the caregiver will receive a plan that outlines recommended next steps. While hopefully helpful, this document is more of a road map than a how-to guide, and these next steps often involve finding new providers for ongoing support.  The next important question caregivers face is:

How do I find the "right" provider?

I wrote this document to help address this question in an organized way. I try to define things like: what type of providers are out there, and what is the difference between them (e.g., what does that alphabet soup of certifications even mean?)  I also outline types of services, service delivery formats, and how to choose the right therapist for the patient and family. This all may sound a bit familiar if you have navigated around my website.

I am grateful for the Rochester Regional Center for Autism Spectrum Disorder (RRCASD) distributing this resource and hope that it provides some clarity and concrete next steps for families trying to figure out the next steps after a loved one receives a new diagnosis.

My very own ADOS kit has arrived!

When does an adult get the chance to spend a ton of money on kid’s toys?  I’ll tell you when…

When they open a private practice and are prepared for ADOS testing on their first day on July 11!

Let me start by first explaining what the ADOS actually is. The formal description is as follows:

The Autism Diagnostic Observation Schedule (ADOS) is a semi-structured assessment of communication, social interaction, and play (or imaginative use of materials) for individuals suspected of having autism or other pervasive developmental disorders.

In a nutshell, the ADOS is a series of structured play and conversation opportunities that aid in determining whether someone meets criteria for autism spectrum disorder. Now the diagnostic process has many more components to it (e.g., a caregiver interview, review of educational records), but getting down on the floor with kids and interacting with them face to face is one of my favorite aspects of my job. To accurately and comprehensively diagnosis Autism, researchers standardized the “play” components so that each person receives relatively similar social opportunities. This test arrives in the form of paperwork protocols and a giant box-o-toys. My new office mates at the practice on East Avenue were shocked when a huge, heavy cardboard box arrived in the waiting room one morning. The box was big enough to hold a love seat, specifically this one. I had a great time unpacking and organizing the contents. For those of you who know how much I love organizing and sorting things, this was its own reward...

These are the materials for the ADOS for older children, adolescents, and adults.

These are the materials for the ADOS for toddlers and young children.

I have been administering the ADOS for many years and received great clinical training on how to interpret the results of this assessment as part of my graduate and post-doctoral training. Today marks an important day for me because now I get my very own set of toys that I get to share with my patients and their families at both of my office locations.

One added bonus is the shipping box:

It was so huge I brought it home to make a play house – talk about a great investment. 

A new home for favorite toys. Note the Dinotrux "bad guys" figures stored in the back of a garbage truck.

I hear you! Website updates

First, I want to give a big THANK YOU to everyone who has supported me by visiting my website! Building the website was definitely a labor of love that my wife gratefully led. She was happy to be able to use all of those pictures on our phones where we tried to capture that perfect moment… only to get the back of our kids' heads instead.

I really appreciate feedback I've received about the website. Friends, co-workers, and clients have helped me fix typos, broken links, and other issues to make the website better. They have also provided invaluable insight for how to improve the clarity and usability of the website.

Two recent additions are the direct result of this honest feedback:

1. The addition of the Clients tab. 

2. The ability to subscribe to this blog.

I have experience and competency working with people at different ages. However, I learned from folks who visited the website that it seemed to focus more on children and adolescents – maybe it was all of those back of my kids’ head photos. To address this, I added a Clients page to outline my training and competencies with children and adolescents, adults, and caregivers.

The blog subscription was a complex challenge my better half tackled head-on.  After reading forums and testing products, she added the subscribe button – which you see as the gray triangle at the bottom right of your screen. If you don’t want to miss a post, simply enter your email address and you will receive each new post in your inbox. I promise to not use this list for any means other than sending out the newest blog posts.

Thank you again for your feedback and support. It was a huge decision to enter into private practice after 9 years (!!!) at the University of Rochester, and I am eagerly awaiting July 11 when I will see my first patients in my new office. I've been really looking forward to this day.

I will leave you today with another aforementioned back-of-the-head-kid-photography gem for your viewing pleasure.

"Why is my kid is crying?"

In a hurry on a Monday morning, we herded our adorable children like wild cats into the back of our car.  And for reasons that remained beyond us both, our son began to wail.

What in the world is he crying about? 

If I had a dollar for every time I thought this about my kids, I’d be a wealthy man.

Crying is a form of communication that evokes so many emotions, both in the self and in others. Crying is a complex and controversial behavior with its own separate domain of critical research. But somehow, many caregivers learn to decode their children’s crying and react emphatically.

How we respond to crying is really important, especially when someone is not able to communicate verbally. This could apply to a child who does not have words yet or a verbally fluent adult who has a hard time “finding their words” when they are emotionally activated.

There’s no one “right way” to respond to crying, but here are a few tips that I’ve found helpful:

1. Listen (rather than trying to problem solve)
2. Observe (rather than act on the other person)
3. Assure (rather than trying to correct or calm) - “I’m here” or “We’ll hug at school”

So you might be asking yourself: What exactly did you do when your son was crying that day?

I’ll tell you:

1. We put him in his car seat (because we were late, of course)
2. I drove as calmly as I could to school (which thankfully was only less than a mile away)
3. We listened through the trill for his words to come to him (which they eventually did)

Why was he crying?

Because we turned off his “movie show” before it was finished. Curse you Daniel Tiger and your end of show skit. Next time, we’ll try to give our little man a warning that we need to turn off the show.

Ugga Mugga my friends. Happy Monday morning.

My LEND Fellowship

During my third year of grad school, I participated in a full year fellowship as part of the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the University of Rochester Medical Center. This year-long fellowship introduced me to some pretty incredible people -- mentors, colleagues, and families -- who take on a leadership role advocating and supporting individuals with disabilities.

This experience offered me the opportunity to:

1. Work in schools under the supervision of Daniel Mruzek, PhD. This work involved conducting assessments, evaluating programming, and partnering with educational providers to modify curriculum for students in their classrooms.
2. Pair with a family who has a child with a developmental disability. This gave me a chance to be with a parent outside of the work setting and gain an appreciation of the family perspective on developmental disabilities. I continue to remain in touch with this family, which I consider a great gift to my training and my life.
3. Meet colleagues in other disciplines who are leaders in the area of developmental disabilities. This has created for me and the families I work with a referral network that crosses different disciplines and service agencies in this community.
4. Visit Congress and dialogue with Congresswoman Louise Slaughter regarding disability policy.

Of course, if you ask my colleagues (or my wife) about LEND, they will likely laugh out loud about what happened while I was in DC on my visit to Congress. Needless to say, one of my more medically-trained colleagues aptly noted over breakfast on the second day of our visit:

“Harrison, you’ve got bed bugs.”

To which I said, “Really? That explains all of this itching.”

Well, a few calls and a new room later, I was ready to advocate on the Hill after having my suit deloused. So in addition to great training, LEND helped with my dry-cleaning!

Here is my video about the LEND at URMC program, sans bed bugs.