have an exciting and fun show for you we all know how important communication is to our social skills and how important proper nutrition is to our health and well being today's guest is going to share with us how she combines both with an emphasis on the most important first step eating and swallowing she has a lot of information to share as well as many great simple but practical tips and techniques that you can do today with your child may see calaboose the is well known for her dynamic approach to the treatment of pediatric eating and swallowing disorders she has extensive knowledge and nearly twenty five years experience in the field of pediatric feeding and swallowing disorders encompassing a wide variety of settings mate c was responsible for instituting outpatient and inpatient pediatric feeding and swallowing therapy programs at the bristol myers squibb children's hospital new brunswick new jersey she was instrumental in establishing programs for the neonatal intensive care unit pediatric intensive care unit and the pediatric oncology unit following her tenure at robert wood johnson university hospital she founded new jersey pediatric feeding associates to offer quality feeding and swallowing therapy to the pediatric population her unique approach recognizes the individual needs of the child and family and how effective diagnosis and therapeutic intervention will be the building blocks to success she provides end up assessment of all aspects of feeding swallowing and mealtime resulting in a specifically designed treatment program addressing the special needs for that family and child nancy received her be a degree in communication disorders at douglas college rutgers university she was awarded the degree of master of arts and speech pathology from keene university where she was awarded a graduate assistant ship and nancy there are so many other things i would love to tell about your background is so extensive but we'll end it there for now and i'm just want to thank you for joining me today thank you so much for having me so inspired by your show and i think we can offer the parents and maybe perhaps some professionals some little insight as to what we do in the services that we offer absolutely i totally agree and i'm so glad that you're excited and the thing i'm wearing with the same passion that's what really led me to you we first spoke and i could tell in your voice your passion your excitement and already you were giving me ideas on the phone and  definitely have to have neat things on the show so we can share more with the world i know you already have quite an extensive reach but i'm so excited to share more with the world what you do i'd like to start with a question sure i just talked about your background and how you have a a degree in speech pathology and i was wondering what led you to specialize or even become interested in the feeding and swallowing part so about thirty years ago when i graduated from king with my master's i actually was hired by the state of new jersey to work as a speech therapist for a state institution following  couple of months in that position i realized that i really wasn't passionate about speech therapy person i needed more of the medical dr more of that research that those skills that i've gotten from wreckers and really find you know why things occurred luckily my employment choices led me to a hospital where i met a need a tele just who had essentially inspired me to go down this path he had babies that were in his units in his nick hughes and in his step down units that were sort of just waiting to gain skills so they can go home there was nobody actually doing any active intervention so together we collaborated and we started to come up with a plan and started to institute it in his hospital and it worked so that gave me the drive and the end mission and the passion to do more research remember the internet wasn't there or thirty years ago so i was constantly in libraries in medical facilities trying to do this research and then fast forward two years i had my own son who was born premature and i had feeling in swallowing issues in addition to reflux and all of the medical let me that comes along with a baby being born premature how ironic or i'd like to get the cobbler with the shoe right so and i just gave you more passion to figure this out now and and you could live it right and you could see it you could mold it and change it and you get a little how you you could help other kids and that's what gives me the unique perspective because there's so many therapists out here who are skilled they're well trained but i have that unique perspective because not only am i skilled and trained in this but i also have the personal perspective i know what it's like as a parent to see your child struggling with feeding and swallowing or struggling with these medical conditions that are difficult to overcome so for me i think that gives me a little bit more in tune with our families and our patients because i can empathize with them and what they're going through absolutely when you talk a lot about the i call it a holistic approach but it's really the family of the pair and the child the whole relationship working together and now i understand better why you do that because you lived it and you bring that experience to the family and you just made this statement and i know that you know how powerful this is but other people really don't know which if you have that direct related to the areas and you know what it's like as a parent because we often go to therapists who are wonderful they're so loving and talented and kind but when they leave and go home at the end of the day they don't have the same challenges and responsibilities of carrying this forward yeah absolutely you do yes so what a blessing you are communication with speaking with language is there a connection and what is it well it's interesting as a researcher and i'm constantly researching whether it's mine whether it's text international data i'm always looking for what is the newest information out there and luckily i have done research on this to make sure that we're not missing anything with our own population and the kids that we see unfortunately there is not one study that sort of connects the two together however we have different researchers who came out with different points of view one was a doctor in mass ashland who said that there is no causal relationship that feeding exists on it no they haven't zone and then it doesn't do anything to prompt speech per se where dr susan evan morris who is a well respected and world renowned therapist in our circles came out and said that in fact there is because if you think about the world control or the neural drive necessary for your muscles to work for feeding and swallowing then this same muscles that are required to work for to cure lation and sound production so therefore there has to be a causal factor or a causal relationship if we can't get the children to eat efficiently or effectively then there may be some sort of precipitation for a you know speech in language deficit later on well that was just my kind of assumption so i was curious to hear what you found because i know with my son he has a proxy and other things and whenever we stimulate the mouth area or he does he eats better and better so i figure there must've been some kind of correlation absolutely areas for your input on that you know that if you stimulate those areas that neural connection then helps to make those muscles work efficiently and we know through repetition doing it over and over again that just helps connect everything together so in fact what you're seeing is sort of like you know the end of the information yes you do these exercises and you give them something that is more foundational so you work with speech or you work with feeding and those connections continue to happen those pathways continue to be made to those areas i love that i'm curious now if you don't mind as you're talking i'm feeling your excitement and wanting to learn a little bit of how you work with the family you talked about this i will c holistic approach in how you take a child in and assess them and just if you can to get maybe even give us an example of a current child you're working with and how that works so if i were to come in with william what would my profits be and how have you seen something similar with someone you're working sure so for us our basis for securing an appointment or for us to even have any interaction is that we need your medical history we find that we look at the medical history perhaps a little more intricately than other facilities do because we are starting to connect the dots from the beginning we want to see what your prenatal history was we want to know what his birth history was we want to know were there anything that we any medical hick ups or any type of diagnoses that maybe were mr maybe couldn't be attributed to what's going on and with william today so are basis is to be investigators and to make sure that we can actually paint a picture of him without having met him yet do we know what's actually happening here so that when he does come in we're able to sit and have sort of that behind the scene knowledge and know how we're going to direct that evaluation too often we find that in a lot of these facilities or clinics they'll bring the children in for an evaluation and they barely know anything about the children and they do this basic evaluation or a motor evaluation they present some foods they give you some recommendations and you're on your way however with us at n j p f a we actually have the parents present because we feel that you being in the situation with us only allows us to educate and present or demonstrate those techniques that we would like to see you carry through at home a lot of the facilities don't allow the parents to be in the room they find them to be distractions so i know that i'm a distr usually show up in the way right that he normally would at home so that's our right our concern but you know you have ways to get around that exactly so during an evaluation we need to have the information all of it we need to see what happens in the presence of difficulties we can have and be a point for the evaluation but everywhere you go home and here is this behavioral dynamic that occurs because it's now you presenting it so we do it and then we have you do it so we can see where the breakdown in the process occurs and then we try to alter that so it's better so you actually observe the parent feeding the child and then give feedback and kind of i guess make tweaks along the legs actually that's wonderful and i'm sure that that that has a much i guess more effective outcome for the child because you're getting this ongoing feedback is that an ongoing process or just all initial every every therapy session we have the parents there we start out the session where we're offering and where sort of guiding the challenges for the child the demands of what therapy actually would be and then we incorporate you into it whether you're sitting next to us and helping us to present those foods or whether you are the one who is guiding it and we step away most most of the time we have cameras in every room where parents can also watch via i pad so we will take the i pad will step out of the room and we can speak to you over the actual cameras so we can help guide you if things start to break down so we find all of the technology also helps because then we can also do that at home so now the child is used to this sort of guided situation so if you're at home and you're like i'm having a complete breakdown we can skype or face time and i can do the same thing that we do in the office to help you get through it and the children respond better wonderful that is the that's that's the main thing i know that it reminds me a little bit about when we homeschooled my son we did a lot of videotaping and feedback of of myself as well as the people working with him and we saw the largest growth in his progress when we did that because you're able to keep on top of it right absolutely and call like in the moment make those changes and that's so important right so if you come into me with a logjam or a communication book that says you know on thursday this is what happened how should we  it at that point it's kind of lost its moment and its momentum and it's hard for us to either recreate it or is it going to have bitchy wait into this pattern that has now been set up so we're there we can get right to the moment we can help you while it's occurring or three days before you're due back that's going to be essential in making p s so you don't have to wait exactly love that how many times that something happened in the moment and then right that's when we need th and really there really and i don't mean to interrupt you but one of the biggest things that we pride ourselves on and enjoy a p f a is that it's constant communication twenty four hours a day so our families get our cell phone numbers they have our e mail addresses because we feel that if we've taken you on as a patient if you're part of our family then we have to be part of your family so if things start to break down you know it's cheating a simple text and saying listen we're having such a hard time absolutely refusing to take fluid from the cup what should we do of course we need to know that we don't want to tell the dehydration based on a recommendation that we made so we will alter will give them steps to sort of pare them back down to where they were except ing and make that and easier you know situation for them which i think is critical i think that you really created an amazing process and i'm thinking i'm realizing how important was that your son had these issues because you know oh  it's like you know what parents need and therefore you're meeting their needs in a way that i've not heard any other therapist or organization to do unfortunately when they when a family goes through this or has a child that has either special needs or is going through some sort of disorder or dysfunction we all know that there are so many people who want to offer their opinions their guidance you know grandma snipers and everybody can cure your child but we know that if you don't have a hand to hold who's actually guiding you through this that process becomes sort of broken so that's what my basis or my vision was when i open new jersey pediatric feeding was to make sure that i was always available that my therapists are always there for you so before we started you were telling me about this little girl race yes i would love to hear more about her and what her challenges are were and what you've done to help her well grace came to me at the age of ten and to no fault of her her parents or anyone in grace's world they had been everywhere they had been to every hospital every specialized program that involved feeding in swallowing and nothing seemed to work for her there was small gains but nothing that was monumental in sort of changing the way that grace was responding to food so when i met grace  she she's nonverbal severely autistic aggressive was drinking a gallon of milk via a bottle and was subsisting on gerber custard some very very so when i met her she was completely underweight undernourished she was basically translucent she was very pale so the first thing we wanted to do with this family was obviously get her on a  more normal developmental path and in order to do that we had to take away the bottle but how do you do that with when that's the only thing out of the only vessel that she was drinking from so we worked with mom on a program of slowly introducing couple more of like a sippy cup because we didn't want to take away the sort of that what she was receiving from that suckling pattern she was doing upon the bottle so we gave her and we started slowly adding the mouth to that and started getting her to do two sips and then how she could ever bottle than three sets and it took a long time because she had a bitchy waded into this pattern for ten years so eventually months it was months  we had gotten her off the bottle completely and at the same time we had transitioned her from milk to almond milk because we found that her gut was just becoming destroyed by all of this dairy so the behaviors were escalating even further with this overload of the middle of the milk ok and you saw that change with all milk so we gave her the almond milk is kind of pared down but at the same time remember now we're doing more demand so that behavior i course was going to go and escalate so basically without getting long and convoluted we brought grace in for what we call an intensive therapy block and we saw grace for two weeks during a summer break in her schooling and we saw her three times a day for two weeks straight so we were there for meal snack meal so that we could present her with the consistencies in the textures that we knew that she might be able to gravitate towards and be successful with pasta with two different kinds of sauces alfredo and red sauce which we all know that color change for children with autism is a big deal it is so she was able to eat meat sauce on her pasta she was now able to eat putting and an actual yogurt rather than these small gerber you know infant type custard and she was drinking from a cup so this isn't weeks and so i know there's so much more that you did a fast forward to today so grace i see grace every maybe two or three weeks just as a monitor more so i think for mom me the school just so we can keep grease on track and make sure that we put any fires out before they start so grace comes to me and we the last time she was here we did chicken to quito you know frozen chicken toronto's she had two of those she has had a hamburger she has had hot dogs while grilled cheese anything we put in front of her now she's apprehensive like most kids would be when it's something new or novel and then as soon as we do our program of going through the steps to getting her comfortable she allows me to put it in and then there's no more of me handling it she does it herself so she's healthy eating and her health she has gained so much i was just add that girl you have so many wonderful techniques would you share with us i know we can't go through all that you do with grace but i was a really brought here you have a job does a bunch of little simple things that i think that parents could you know these are things you can do today per i know that there's a lot of merchandise or items that you can get your specialty catalogs things like that which are great you know i'm certainly use those tools and i think they're necessary in order to be successful however i think that we also spend a lot of time on getting the correct tool when if we just use or improvise right use your household tools you know things that are around your home that could be beneficial harmon walgreens war m r you can find a million things in there that can help your children for example one of the things we use this is a silicone straw so if you feel it you know that it's chilly rightly so we use this frequently you know obviously children use it for drinking from a straw but what the way we use it is to get children to learn how to chew so most frequently they like to chew on inanimate objects so when you give them a regular shroff you know that they don't get that same kind of feedback they're looking for this bounce or this response from whatever it is that they're chewing so with this will start them on just holding it and just becoming more accepting of the getting them to buy it on it see what they can do with it and then what we slowly deal is will add food items in the you can put it far enough back where they can just get that initial crunch so that their auditory system knows where crunching actually sounds like and they don't get what's called hyper cue says they're not afraid of what it sounds like and then that's where we start to pair  this crunch and they love doing it so they'll keep going and batting more and so they love very simple you can do anything that is a multiple solid we don't suggest you putting in anything harder the only other transition activity we would suggest is if they do have a problem where crunching or the sound effects of a crunch we would suggest you putting in like fruit leather or fruit chew just so they can get that sticky chew two out of three so when we only have a few minutes left  your favorite so one of the favorite things we live is using wristbands this not only gives them yep it gives them input to their hands for feeding so if you want them to use utensils this gives them sort of like a good security that we start to teach them how to wait their mouth i love this so we say well yeah and the next thing we have is for the younger kids we know that feeding other people is a novelty they can feed you will feed anybody the feed the animals but the minute you ask the feed themselves it's an absolute now so we found this on the market and we loved it because it's something simple it's three ninety nine it's in born babies or as amazon whichever and it is actually one of those snack keepers where you can put food in so the way that we use it is we put it between his teeth and we have eat him feed and then we have them feed themselves or we have the monster feed them so we'll put in the monster's giving it back to them so  little activity for them the other thing we do which i you know this is just aha moment for a lot of people is one of the reasons why children don't like to drink get up open cups is because they can't sustain it with their jaw so we're notorious for giving them adult like yes fals for them to extract the liquid from so we found that these tiny little disposable shot glasses from have to actually regulate the flow because you can't put much in it so they're not worried about how much is coming towards their mouth and they're able to stabilize without getting that biting on that thin plastic where they crack it so those are a little bit more sustainable so they're able to handle it by saying this is how we teach some of the open cup strategies and faces and you actually peel the faces off and you could put them on foods that perhaps the kids are afraid to touch or engage with so they can make them right you can eat them the consumable but you can put something on the plate and you can have them engage because the first of feeding is making sure they can engage your hold or interact with so this is was a nice thing to help them and maybe this we have time for one more sure this we use this is just a simple i don't even know what you would call it what do you call yet these are just activity tweezers that we picked up at lake shore learning and what we actually do with this is when we have a lot of children who are tactfully defensive and do not want to touch anything that slimy anything that has residue that gets on their hands so we'll have them use this to have them engage with the food whether it's putting it in something or putting it in their mouth or getting them to to get it close to their lips so we'll use just simple tweezers i don't recommend using the tweezers that you would use on your face because those metal ones they can get in and hurt and actually cause damage well this is wonderful thank you for sharing so many practical simple things that we can use right now and that's what one of the my passion is the you know sharing information so that people today can make an impact with their families and and they're going to make and you're making an impact with what you're doing you really are and  you do in new jersey and we don't have time to go into how you're you're reaching people outside of this country even around the world but we're so grateful to everything you do and we hope that more people will learn about you especially through the show with the new jersey engage with us weekly and they pose some really interesting questions so if they have time to look into that wonderful thank you so much for joining us nancy thank you so much for having me and you're welcome and thank you for joining us has been just a thrill to all of her amazing techniques and ideas and experience with you and i'm so glad that she was here with us today and look forward to seeing you next time on navigate autism with jane lynch and i'm going to be starting a series soon talking about the real moms of autism it's a kind of a behind the scenes peek of what really goes on in our lives so that you can understand a little bit more it's less mysterious but also relate to it if you are a parent or a mom with autism you can see you're not alone we're