Hi, I am Leslie Burby, the Editor in Chief of Autism Parenting Magazine. Thanks for checking out our first podcast. I thought I would give some background information about why I interviewed Dr. John Pagano about the Autism Massage.
Dr. John was introduced to me through a receptionist at my daughter’s previous occupational physical therapy centre in Watertown Connecticut. We had moved away from there to a different location in Connecticut and had canceled the therapy services there while we were waiting to be seen at a different therapy centre closer to our new home. Unfortunately, the insurance wouldn’t allow us to continue services in Watertown while we were on a waiting list in another town. So my daughter was not getting any services until her name was up on the list. So while we waited for services, we had to learn some coping mechanisms to handle the 3 to 5 major meltdowns everyday not to mention the fact that she was nearly impossible to get her to go to sleep and when she was asleep she wouldn’t stay asleep and the only foods that she was able to eat were soft and mushy because she has hypotonia which means that she has such slow muscle tone that she couldn’t even chew her food. Though all she ate was apple sauce, pudding and yogurt and we have to give her chocolate pediasure mixed with whole milk to help fill those nutritional gaps in her diet, so when the old receptionist called me and asked me if I would be willing to let a doctor come to my home and practice this autism massage on my daughter with me being present.
I, of course, was very open to the idea, however, I was so very cautious as a parent, I had many questions so I invited him over and he gave us tons of information, even watch the video with us explaining everything that was going to go on and even showing our daughter what was going to happen so she wouldn’t have any fear when he reached out to first touch her. So Basically, it’s very simple, he let me taps on her head and the tapping of the hand outward of the body and its very common he receiving at first she was very unsure of what he was doing, wasn’t really sure she didn’t want anybody to touch her unless me rubbing her back or giving her squeezes, which is deep compression big bear hugs and so eventually he round and it was very helpful, she eventually would ask for him on a daily basis, she is 6 years old now and still asks to see him although he does not come anymore. She will still ask for what she affectionately calls the Autism Massage which is “PATPAT” because he pats his hands against her head. So she will still ask her “PATPAT” when she’s feeling overwhelmed or had a bad day and it’s a very helpful thing I think as a parent because my husband and I were finally able to do something at home that helped our daughter, we want it so desperately to help her with those sensory overloads that she was having that just didn’t have any way to do so. So, John gave us that tool to help her and it was very, very helpful. So, I was very excited when he agreed to be interviewed and I hope you enjoy the interview as much as I did. I encourage you to check out John’s website and he also does public speaking engagement so if you’re looking for that as well, you can contact him. Thank you for checking our podcast and feel free to go to www.autismparentingmagazine.com and enter your email to get 1 free subscription of our magazine.
Leslie: So today is January 27, 2013, and were talking with Dr. John Pagano. Hi John!
Dr. John Pagano: Hi!
Leslie: So, can you give us a little background of you and your qualifications?
Dr. John Pagano: I started volunteering when I was 13 because I had a sister with Down Syndrome and what I noticed was that when I saw people with Down Syndrome – they scared me. I felt really bad about that. So I walked into this mental retardation facility and they just put children in my lap and I started to work with them as a volunteer and when I was 16 they hired me, so I became an OT (Occupational Therapist). When I got my Bachelor’s degree, I found out that I didn’t know nearly enough so I went back and got my masters in early childhood special ed and I got my doctorate in Marriage and Family Therapy ‘cause we were then suddenly supposed to be experts in working with the families and I wanted to know more.
Leslie: Great! Okay, so you are an occupational therapist?
Dr. John Pagano: Yes
Leslie: And can you tell us about how you became interested in the QST massage and explain further
Dr. John Pagano: Oh sure! QST is Chi gong sensory therapy and I said I wasn’t going to do anything else but then I saw the research on it and it was proven to be effective for preschoolers with autism and there is not much research on massage approaches but they really are effective like this was for improving behavior so I said I really would like to do this. They said well we are coming to Massachusetts. So, I went there and then they had to find me a family in CT and that is how I met you.
Leslie: Okay, so we know the autism massage works we’ve seen it first hand and the research does back it up and there is a site right? www.QSTI.org Parent-Delivered Autism Treatment for Children from Chinese Medicine
Dr. John Pagano: Yes
Leslie: At what ages do you or they (The Qigong Sensory Training Institute) recommend for this massage?
Dr. John Pagano: It’s been researched on preschoolers on the autism spectrum, so it’s 3-5 on the autism spectrum and so she began to do research to show its effectiveness with Down Syndrome and other things, too. I’ve used it despite the fact that she told me to only use it with autism, with Tourette syndrome, children who have been severely abused and neglected in early childhood and found it effective for all of them but she likes to stay with what she’s obviously researched ‘cause she is a doctor and everything
Leslie: And by “she” you mean Dr. Louisa Silva?
Dr. John Pagano: Dr. Silva who is a medical doctor does think it will have more applications but she wants to prove everything before she prints it out. So what we know is that it is effective for children on the autism spectrum, 3-5 and what the research kind of shows is if the child has mild autism then the parent doing it is the most effective, if they have severe autism its more effective if the therapist does it and shows the parent, they are not exactly sure why but that’s what the research tended to show. So you know if kids are more severely involved it tends to be helpful to have a therapist involved, or OT PT or speech therapist, or chiropractor or whoever, who has been certified in it (and thanks to your child I am certified in it) and to have someone do it but if its more mild you could learn it as a parent and do it yourself. I would have a therapist who could see you occasionally and tweak it.
Leslie: So have you, you have incorporated it in your work which is at the Mental Hospital
Dr. John Pagano: Yeah. Most of my career, I was in pediatric occupational therapy and then about six years ago I started working with children with mental illness and developmental problems and that became like a passion.
Leslie: Okay, so since the massage is not your typical, traditional form of therapy, what would you say to parents to help overcome any skepticism or apprehensiveness that they may have when they hear about it? If they have any questions. I know I initially was concerned when I heard about the massage ‘cause I’m extremely guarded over my children. I, of course, am very parental and maternal. What would you offer, and how do you calm those thoughts or ensure them?
Dr. John Pagano: Well, first of all I think that touch is a very nurturing thing to do with a young child so it is something your family was already doing and I simply showed you a research-proven way of doing it that kind of gave it a structure for your husband and you to implement it nightly and then I know I did it once a week. There is some controversy about it for some fundamentalist religious parents because it is based on acupuncture, chi gong, it’s actually called Tui Na (it’s a Chinese massage) but it uses the acupressure points. One of the things that I personally think is the reason that it’s so effective is that the parent is spending nurturing time with their child and that I think would also facilitate the language. It’s part of the bedtime routine and it improves sleeping and a lot of things that we saw, I was attracted to it because it improves behavior.
Leslie: Right because I saw it first hand and it was extremely helpful for my daughter. Can you tell us about the seminars that you offer?
Dr. John Pagano: I combine a bunch of things. I give workshops all over the country for two organizations one is called the Bureau of Education and Research, BR that’s for regular preschools and kindergarten teachers, as well as special ed people that help people in schools. A lot of times even regular preschool or kindergarten teachers have kids who by the second grade are labeled as having some type of developmental problem (autism or something else) but right now they don’t [have the label] so they have to teach them in a regular classroom or as a special ed teacher. So I give one-day classes around the country and in Canada for preschool and kindergarten teachers and OT’s and PT’s speech. It’s called FAB (Functionally Applied Behavior) strategies and I call it (Functional Alert Behavioral) strategy actually. The reason that I do that is I combine behaviorism with some of the special things that you need to do with kids with developmental problems. So they are just basically four areas that I do.
Leslie: Oh Okay! Great! On your website, www.FABstrategies.org, I love your documents about sensory triggers and the images. I thought it was very helpful actually. I even brought it to my daughter’s school. There are some situations that I don’t think people would even consider being triggers for some people until it is brought to their attention. So, if I was very helpful to see the chart. Being held/restrained, being in a crowd especially auditoriums at school, darkness especially when the teachers shuts the lights-off to calm the classroom down, being told no or being bossy to name a few on the chart. What do you recommend to parents that have children that are triggered when they are told no and when they feel their parents are being bossy? How do you recommend a parent address some of those (like a dangerous issue) without using the word no, without trying to appear bossy?
Dr. John Pagano: Well, yeah there are two kinds of challenges with it. When you have a meltdown or a real problem, the good thing that you can take away from it is you know when you’re going to have a problem. You can put stuff into place, to support yourself. So, if your child has tantrums when they have to go to the school assembly. Yet the principal says that they have to go to the school assembly. You can ask the school to put in some pre-corrections. There are going to be things that you’re going to put in place because you know you’re going to have a problem with the assembly. Or there are dads who are going to insist on bringing their child with autism to a monster truck rally indoors and I know that’s going to be a problem but it’s really important to the father. So you put some things in place. You have a favorite person come with you or you would give some headphones and you would give them some options and you would give them a reward for doing it well. So, there are just some things that you can put into place in difficult situations so that you’re reacting before they happen. Once you have one blow up- that’s all you need to have.
Leslie: Right. Okay in another document on www.fabstrategies.org you have images to point out or color what helps them feel better such as headphones, chewy tubes, quiet area, body socks, trampoline, listening to some music, playing the computer just to name some. What would you say is the most, is the most that you see commonly picked relaxer?
Dr. John Pagano: In the schools, the thing that I use the most is the noise-canceling headphones but a little caveat about that is that kids are overly sensitive compared to average kids to noise but a lot of those kids are also oversensitive to touch so what I do is I put my hands over their ears press for like three seconds and then slap the headphones on and give them some prize for just wearing the headphones so they get used to the touch/feel. My sister used to give me needles and she’d press around that area before that she give me around that didn’t hurt so much so I used that kind of way of doing that and (I press on their ears and shove it on the head) and then reinforcing him for just wearing it then you can see how it is effective. Another thing for a lot of the kids that I’d say one of the biggest wants in preschool or kindergarten is a disco set, it’s like you can take a beach ball and .blow it halfway up the kids kind of off-balance or if you buy a disco set, it’s a — thing with air and its only good for kids with balance and it enables them to sit for like one minute in-class cause if they are going to go to a regular first grade class you’re going to have to sit for quite a while when you start working when they are young but they are not really sitting still because they are really going kind of like this [Dr. Pagano wiggles his waist], to stand on the cushion so it gives them some movement so those are some of my favorites, that I probably use the most.
Leslie: Okay! Great! Thank you! Do you want to talk about your research book?
Dr. John Pagano: Just basically the approach that I use has four parts, environmental adaptations like adaptive equipment like a chewy or something that you would replace the behavior with. A sensory modulation that’s the second section has a bunch of strategies, feel your feet to calm down or be a bird, breathe in and breathe out that kind of thing then the third area is behavior strategies and the fourth area that is in Section D would be physical sensory like swings that would be more things that the therapist would do but that the way the parent and the teacher and the therapist could be using the same sheet, the same strategies.
Leslie: Alright! Great! I see that in your handbook that you have it all written down, which is great. Alright, well thank you so much for coming and speaking with Autism Parenting today.
If you want to see Dr. John Pagano perform the massage check out: