Hello,

 

My son was using TalkTools products since he was about 4 months old until he was 2 years old.

 

He is now 3 years and does not like them at all. Gets really mad when I try to use the chewy things, Z-Vibe or straws. He really does not want anything inside his mouth or to get his face massaged. 

 

Any recommendations?

 

Any other tools that are recommended for kids with Down Syndrome?

 

Adriana

Hi Adriana,

These behavior can develop as children get older. In my class on Autism, I describe many factors that can contribute to behavioral challenges, sensory-motor challenges and moving forward in therapy.

First and foremost a predictable schedule with built in rewards is critical. Rewards need to be very frequent.

Secondly many kids need a sensory warm up. Consult with an OT/PT that specializes in sensory integration. Whole body movement, massage, music and sensory methods may be helpful prior to oral exercises.

Finally, without seeing your child myself I cannot recommend specifics; however at TalkTools not only do we support our work, but the work of Pam Marshalla, Debra Beckman and Diane Bahr, all have oral motor programs. I suspect the program may be too routine, so adding some massages, feeding programs and a more reinforcers may do the trick.

Robyn Merkel Walsh, MA, CCC SLP

Dear Lori,

I attended the Sensory Feeding Course in England in June, and would like to thank you for a full two days of professional input.  Before I left Manchester, I had already thought of how I was going to utilize some of the techniques in my therapy sessions.

You had mentioned that you would not mind answering questions, so I hope you do not mind me taking advantage of the very generous offer.

I have my first appointment to see a 4 month old boy with feeding problems next week.  Mom reports that he breast fed nicely (after an initial period of latching difficulty, and the need to suck using a nipple shield). After 1 week, baby got floppy, stopped feeding, and was taken to hospital, where he stayed for a few weeks. He is currently being fed through a nasal feed tube.  Although he is reported to have a strong suck, he does not suck on breast for long. Bottle feeding has the same results.  This child has had extensive genetic testing, endoscopy (up to larynx), videofluroscopy, and EMG--all without any abnormal findings. He is scheduled for an endoscopy to investigate the esophagus.  He has reflux, and I was told that milk came through the nose.  The ENT did not find any sub-cutaneous cleft, nor velo-pharyngeal insufficiency.  He will also have an MRI.  The current medical opinion seems to indicate problems with swallowing.   All this information was received by phone. I have not seen any reports, as yet.

My goal for the session (aside from meeting and assessing the child), is to show mom the oral and sensory-motor stimulation techniques and massages (as well as hand, foot and body massages).  I also would like to introduce some pre-feeding activities, to try to prevent, or, at least minimize oral sensitivity and aversion to food taken orally.

Question: With a dry spoon (Beckman E-Z feeder), shall I introduce spoon feeding with a front feed, or side feed technique? I am inclined to do both, as they involve different oral motor movements.  However, I do not want to instill incorrect feeding behaviors.  (This is the first time that I am working with an infant).

I would like to thank you in advance for your input.

Best regards,

Hi Lori,

I recently took your "Feeding Therapy: A Sensory-Motor Approach" workshop and it was great!!  In the past year I've completed the "Oral-Motor Therapy: Assessment & Program Plan Development" DVD as well and started volunteering with the local Down Syndrome Association to practice what I've learned.

My current client is a 4 year old boy with Down syndrome who has tactile defensiveness, which I believe is secondary to having been through a 'feeding' approach that pushed more on him than his oral-motor skills could handle. Overall, he is low tone, with open mouth and significant tongue protrusion.  His current team has recommended a very expensive behavioral feeding program, which I don't believe will benefit him at this time.  He will currently only drink formula from a bottle, 6 times per day.  When he drinks from the bottle he is suckling with his tongue right out underneath the nipple, and he has been fed in a reclined bouncy chair. He is not able to drink from a cup as even thickened liquid is lost all over, and his tongue is still out under the cup rim.  He tilts the cup up and gets liquid on his top lip and inadvertently in his mouth.

We've figured out a seating position we can work with (in a booster seat - not the best, but all we have right now), but don't have an OT in the picture to make recommendations.  We started on a pre-feeding program to normalize sensory response, and, where he would not let anyone touch his face at all, he is now letting us do some facial massage, tapping (with hands and with vibration) and Gator kisses, and recently started putting the end of the Gator Jiggler in his mouth.  He will not yet tolerate any tools further inside his mouth than his lips, but we have started to get some lip rounding and tongue retraction when he puts the Gator Jiggler in his mouth.  He is also letting his Mom and I hold Horn #1 and he will blow on it 5 times at this point.

He is obviously still on the bottle at this point for nutrition, but his family and I are working towards lip closure, tongue retraction and getting his cheeks active.  The attempt with the honey bear was unsuccessful as too much liquid got squeezed into his mouth so he is now refusing it.  His parents report he can use the Straw #1 from the hierarchy to suckle and get liquids that way.

I'm really on my own right now, as there are very few therapists where I live that have been trained using these methods so I wanted to make sure I'm on the right path with him.  My goals are:  pre-feeding program to normalize sensory response and allow tools on his face/in his mouth, get lip-closure and tongue retraction, activate/develop his cheeks, and later start elongating the lateral margins of his tongue to get lateralization, and start with chewing hierarchy number 1.

Here are my questions:  1)  Am I on the right track, based on the little you now know about him?  2) Should I stick with the straw hierarchy, and not introduce the recessed-lid cup as too many things might be confusing?  3)  He has very limited different tastes in his diet right now, is it okay to introduce different tastes in liquid form, or will this interfere too much with our primary goal of getting into his mouth??  4)  Can I please get your recipe for natural thickener?

Thank you so much for any assistance/direction you can give me!

Hello,

Thank you for your email. I am impressed with both your assessment and your proposed treatment plan.  Given your description of his sensory motor skills I agree that a behavioral program is not warranted at this time. It sounds like you have made some initial gains which will allow you to access his oral musculature.  I think your priorities are massage, tap and tone, the cheek stretch, Mickey Mouse /m/, lateral tongue massage and chewing hierarchy level #1. If he is drinking from Straw #1, absolutely continue the hierarchy and do not introduce the cup and the straw at the same time.  You may try naturally thickened liquids such as fruit smoothies (yogurt, fruit and ice well blended) or stage 1 fruit purees thinned out with spring water.  You can also try adding club soda to the fruit puree to add the sensory input.  As for transitioning from liquids to puree. I would start with the mickey mouse /m/ in your pre-feeding program to develop the motor plan for spoon feeding, then work toward using the vibrating spoon with nothing on it to develop the motor plan for therapeutic spoon feeding. Then try liquids he tolerates on the spoon (I might start with water and work my way to a flavor)!!!! Thanks for sharing!

Good luck.

Lori Overland, MS, CCC-SLP, C/NDT

Dear Lori,

I just completed your "Feeding Therapy: A Sensory-Motor Approach" DVD. What an amazing course! It certainly gave me a great deal of confidence in working with children with feeding disorders. While it was extremely thorough and informative, I do have several questions for you. I would love your input!

1. When would you typically recommend an OT evaluation?  Or perhaps I should say,  in which cases would you not refer a child (with an apparent feeding disorder) to an OT?  ***Great question! I look at the whole child and ask a lot of questions about how the child moves through life. In my case history form I ask questions like: does your child get upset easily, does your child have difficulty calming, does your child have difficulty in new situations, transitions, separation etc, does your child have complicated routines for bed, bath, daily living activities, etc... During the evaluation I watch how the child responds to input in the environment. If I observe underlying sensory concerns (sometimes parents just think their child is challenging, or high maintenance and do not realize the behaviors they observe are secondary to sensory issues) I immediately refer to an OT. If the child seems to be able to self regulate, modulate incoming information (for everything but feeding) ....I would not necessarily refer to an OT immediately. I might start an oral sensory motor pre-feeding program and see how the child progresses.***

2. You spoke a bit about breastfeeding, and I was wondering, what role would a lactation consultant play in breastfeeding support if you are working with a nursing mother?  Would our job be the same as a lactation consultant's or would you ever refer the family to one?***I work with great lactation consultants. They are often the first ones to see the baby. They call me in when they observe oral sensory motor issues which are not related to the mothers milk production, bonding, positioning etc. If it is a mom issue...it is definitely the lactation consultants role to consult. If the baby has oral sensory motor issues....that is our role.***

I would also like to order some tools from your website for my practice.  I want to add the Mickey Mouse attachment, but I am not sure if I should buy the hard or soft one.  ***It depends on your child's sensory system...but overall I prefer the soft mouse*** When would you use one vs the other? ***If a child needs more input I would recommend the hard one*** And what about the cat?  I don't think you talked about it in the video, but I am curious to know when it should be used. ***I use the cat ears to get tongue tip pointing. For example, I may present the cat ear at the lateral incisor for chewing hierarchy level #3, and then alternate lateral incisors!!!!***

I really wish I was able to physically attend your course and get to meet you in person!  You are such an inspiration to me!!  Thank you for all of your incredible work. ***Thank you for taking the class on video, and I hope one day we will meet in person. I am doing a one-hour seminar at ASHA this year!!!! If you are there, please come and introduce yourself!!!!

My very best,

Lori***

Hi Ms. Lori Overland,

I am an Occupational Therapist from Chicago. However, I am now working in Australia as an OT. I have always been interested in setting up a feeding program here and therefore began viewing your course. I just love how you integrate a child's individual sensory needs into their personal feeding program! I was just awed by how you were able to assist a child who only liked round brown foods!

I was wondering if you have the time to provide me with your expert tips on how to go about slowly changing the diet of a child who only prefers white bland foods. For example, this child will only drink milk from a bottle, have arrowroot cookies-which are plain tannish in color, chicken tenders, kids' cheese pizza, but without the cheese, and white bread.

At the moment he is tactile defensive, but is seeking much proprioceptive input, not just to his body, but also to the inside of his mouth. He chews on his pacifier and bites hard on his cookies. He tends to hold food in his mouth and then swallow hard. He does have some tongue lateralization, but not much of a rotary chew.

He had a brain tumor and has been through chemo. He is currently cancer free. He was then diagnosed with Autism. He is babbling and singing songs without saying the whole word, but attempting the words.

Only if you get a chance, I'd greatly appreciate any input you have regarding how I should go about varying his diet a little bit and increasing his rotary chew, as well as slowly getting him away from the bottle.

Thanks and take care.

Hello,

Thank you for your email and your kind words. I am wondering if you saw the first or second edition of my two day sensory motor feeding class? It seems like there are many layers with this child:

1)  Medical - I frequently see children who have had chemo therapy have difficulty swallowing and some of his self limited diet may be secondary to pain he had during chem. Are there any other medical issues? Has he had a swallow study?

2) Postural - You did not mention posture and alignment but I am wondering (based on your description of his mouth and his sensory system) whether there are any issues with tone, posture and alignment (when did he have cancer? Did he spend time in prone? Any issues with pec/abdominal synergy? Are his ribs/abs connected ? Is respiration a concern?

3) Sensory - Does he tolerate teeth brushing? Can he tolerate vibration peri or intra orally? Does he have difficulty with transitions in life (what you see in life is often what you get in the mouth)?  Have you tried a Spio garment on him (www.spioworks.com). If you are not familiar...spio is a flexible bracing system which provides dynamic stability and deep pressure sensory input.

4) Oral Sensory Motor - I have a few questions: is he actually chewing the foods he eats? Do you see food in the front third of his mouth? Does he collect a bolus or is the food spread across his tongue? Do you see food pooled on the surface of the tongue? Does he lateralize food using the tongue tip and lateral border or does he dump or use a protrusion retraction pattern to move food laterally? Is food masticated on the canines or on the first molar? I am concerned about the hard swallow (does he have a reverse swallow?) ....is this because he has difficulty collecting the bolus? Is it because he has not adequately masticated the bolus, because he is not using the lateral borders of his tongue? Is he using a repetitive reverse swallow pattern? Does he have lip closure and lip rounding? Does he have cheek contraction for sucking, chewing, swallowing and to stabilize solid food?  If not, you may want to start with a pre-feeding program before you try to change taste or texture. When I am sure that the medical, whole body sensory, postural and pre-feeding issues are being addressed I will start to try to change taste and temperature. Move very slowly away from his home base. I may start by doing "science experiments" or cooking with foods that are very similar to his foods...different types of chicken nuggets, making our own pizza, cutting out shapes using a variety of different white breads, baking sugar cookies and eventually going to smell, lick, bite with the "new" food. With children on the autistic spectrum I may have to work with a behaviorist once I have addressed the oral sensory motor issues...but not always. If you would like to send me a short video I would be happy to take a look!

Lori Overland

Thanks so much Lori for your quick response! I had no idea how much was involved. I am looking through each and every question you asked. When next I see the family I will ask his mother if I can take video of a session to pass on to you for your expert opinion. I am just so inspired and awed by you! You are absolutely brilliant and a GEM to even consider taking the time to respond to my query in so much depth. Thanks so much for your time and your expert knowledge. I truly appreciate it and so will the families I work with. I will write back when I have more info for you. Thanks again and take care.