Wednesday, May 6, 2009

How to Ensure Great Sensory Therapy For Your Child

Recently, Dr. Lucy Miller, Ph.D. OTR, who is known in international circles as the top researcher in Sensory Processing Disorder (SPD) agreed to speak to Can Mom Be Calm about how parents can find good Occupational Therapists (OTs) for their children. Dr. Miller is also the author of Sensational Kids: Hope and Help for Children with Sensory Processing Disorder and trained under A. Jean Ayres whose pioneering work brought SPD into the spotlight.

Choosing The Right Therapist

When I asked Dr. Miller to help us figure out how to choose a therapist, she first pointed to a page in the SPD Foundation website that discusses this issue but I was able to get a more specific response. “Before you even start an evaluation, ask them for their resume.” Ohmigosh, I had never done THAT before. However, it’s a great idea, why not? While I don’t have my pediatrician’s resume, I know where she went to medical school, where she did her residency, and at which hospital she can admit patients.

“You have to know where they went to school, how long have they been mentored and where they completed their mentorship. Experience is important, too. You should ask how many years they have been treating children with SPD and how many of these children do they see a year.” Dr. Miller says that this will help you figure out how much experience they have in treating SPD. She also feels it is helpful to ask how many continuing education courses they have taken. If a majority of the courses deal with sensory processing disorder, then that is good news. Hint: On the SPD foundation website, there is a treatment directory that shows examples of resumes reflecting good experience in SPD therapy.

Asking the therapist about their philosophy of treatment is critical. Dr. Miller says, “You want to hear about family-centered care, parents' priorities, and they should have an eclectic approach.” This means they could implement DIR®/Floortime™ (Dr. Greenspan’s approach) or they might implement an NDT (neurodevelopmental therapy) approach. I honestly don’t even know if any of my kids’ therapists do this or not and now feel very much in-the-dark. Seriously, I felt well-read on SPD. Wrong!

There actually is a certificate for SPD. However, the certificate just means is that the therapist is certified to provide the sensory integration and practice test. Unfortunately, it does not automatically mean they are completely capable of treating a child with SPD but it also doesn’t mean they can not. Nothing is easy for us, is it?

How Can You Tell If the Therapy is Working?

Four Steps to Remember

This question is huge to me because I see things in black and white. But OT doesn’t work overnight so how does a parent know that the therapy is helping their child?

  1. Dr. Miller believes that there should be clear goals from the beginning and that short term goals are best. The OT should be able to provide that to you so you know if it’s working or not working. You have to see changes in function, if not, find another therapist. They should also start their first session speaking with you to clearly understand what you need to see from your child. I can remember very few OTs doing that with me. However, in my experience, the ones that do that initial talk with me, really makes me feel like we are working toward specific functional goals.

  1. Dr. Miller then said something which really surprised me. Take a vacation from therapy. What? Hello? I worked SOOOOO hard to get my children the amount of therapy sessions they receive from the government but that is what she said. She believes that children should have intensive therapy but then take a vacation from it. “This is how you know what is working and what is progress as a result of just growing up.” You have to admire doctors who tell the truth like that.

  1. Don’t let the therapist take your child and go into a room while you wait for them in the waiting room. Go in, see what they’re doing and talk to your therapist, she told me. They should be good with communicating with you and you should be comfortable with them. This made so much sense to me because Spencer’s therapist does this almost every time I see him. I get a least one comment from him about his progress and he informs me on the tactics he uses to get Spencer to overcome his tactile defensiveness. We have a great advantage because Spencer gets therapy at home and Logan is not home to interrupt it.

  1. I was about to wrap up the topic but Dr. Miller threw this in because she felt it was very important. That is, parents must get their therapist to do standardized testing and not just give clinical observations. Of course, testing is done in the beginning and at the end of therapy but simpler forms of testing performed during the period of therapy can help parents measure progress.

My conversation with Dr. Miller really sent me spinning. I called both of Logan's occupational therapists (school and clinic) to talk with them right away about Logan’s progress and their goals for him. I learned that taking time out to talk to them can really help you see what is going on and you can help each other help your child. I also got to know them better and was impressed by how much they knew my child's issues.

There is more to come from Dr. Miller. We talked so long that she was able to tell me some very important things that parents can do to help their child succeed. This conversation really floored me. She actually said that when it comes to sensory issues, parents should use the F-word. It’s too much to explain here but don't be alarmed, it's a lot more tame than you think. I’ll be posting that story hopefully by next week.

In the meantime, please visit I'm so grateful to Dr. Miller and the foundation for giving us this advice and I know Logan and Spencer will definitely benefit from it. I am also going to see how I can support them. I used to support children's organizations but I haven't done a lick of volunteer work in years! I heard there is a bumper sticker coming out and I think I'd like to start with that since I love to spread the news and it also might help cover some scratches from my miserable parallel parking attempts.

(pictured above: Dr. Lucy Miller; pictured below: Logan eating popcorn and watching TV upside down. I have given up on telling him to sit down. He needs the vestibular input so I let him do it.)


Anonymous said...

Thanks, right now we're in the process of choosing an OT for Dillon, and I feel so lost. His school is giving me a lot of pressure to "just get him into OT", so I finally just told them that he's on a waiting list. Meanwhile the OT from school is just working on his handwriting issues.

I really do want to know what she means by "the F-word" - I'm sure its not F*** - so there has to be another word that starts with F that is a keyword for something that is of great help with our SPD challenges.

AS always, you are amazing.


Penny Williams said...

That picture of Logan upside down could be a picture of my son (before medication). As silly as it seems, it is so reasuring to see other kids who have the same weird quirks (that actually happen for a reason). I commend you - it takes a lot of restraint to not tell them to sit right to eat.

Jenn said...

Trish and Penny,
Thanks for your kind words. The F-word is function. I'll write this in more detail in my next post but she basically said that you must stress function when talking to insurance or doing so on an IEP. She said never to mention "sensory" as many are not required to deal with that but they are required to deal with function. Other people say different things like mention the sensory to describe how it compromises function. I don't know quite what to make of it.

btw, that pic of Logan is of him ON meds! argh. i've heard that meds don't work on sensory issues. I don't know. I think I have to do something about his meds anyway.

Kay Marner said...

That picture of Logan is my Natalie too! She went through a period of maybe 2 months where she spent most of her free time upside down! I assumed that it was helping her somehow, and didn't fight it, and she's not doing it anymore. Now that she can be outside, her sensory input of choice is swinging and playing in sand and dirt.

Anonymous said...

hi Jenn - I just discovered your blog through a Yahoo group. It's fantastic! I just shared this post with some friends who are getting OT for their "sensational" kids, and I wanted to thank you for these great tips.

I wholeheartedly endorse the recommendation about taking a vacation from all the therapies. We took a week-long family vacation in January to Disney for our 3 year old's birthday (who has PDD), and it was amazing. I was afraid that without the intensive therapies, we'd see a regression of behaviors, but it was the complete opposite experience. First, it gave us all a chance to step back and really see just how far he's come after a year of ABA, ST, OT and PT, and when we returned to NYC, he seemed to suddenly take a giant leap forward in his development with new words, more spontaneous language, better eye contact and focus, etc.

Not saying everyone has to take a trip to Disney to see progress ... but a break from all the intensive therapies really did the whole family a world of good.

- Crystal

Your Therapy Source Inc said...

Excellent blog post. I am a pediatric physical therapist and mother of four. Parents need to be proactive and interview therapists just as suggested. Pediatric therapists have such varying degrees of training so being informed will significantly help your child. Thanks for this great info. I just shared it on Twitter.