Pre-feeding Exercises for Children with DS: A must?

In response to the many recent blog posts on the topic, I’ve decided to chime in with ababyspaghetti series on oral-motor therapy, feeding, and DS. We’re going to start with the basics, move into myths I’ve read online, and finish up with what really works!

So what are pre-feeding exercises? Pre-feeding exercises are activities the parent or caregiver completes with the child prior to feeding in order to improve eating. You may see them called mouth exercises, oral stimulation, or non-speech oral motor exercises (NSOME). Regardless of the name, there are varying ideas of what pre-feeding exercises look like and how they should be performed. They can be as passive as massaging the child’s face to as invasive as brushing the roof of the mouth with a NUK brush.

Am I personally against pre-feeding exercises? In short, no.  However, I want to emphasize that little research has been done on these techniques. Peer-reviewed research specific to DS and pre-feeding exercises is non-existent. However, that doesn’t mean a well-trained SLP shouldn’t use them with your child. Instead, these exercises may be one part of the feeding/swallowing treatment plan developed by a therapist who understands swallowing disorders.

Pre-feeding exercises do not apply to ALL children with DS. There is no evidence to support that they “prevent” feeding disorders from developing.

Children with DS are a very diverse group! Part of the reason why they (and children without DS) gain feeding skills at different times is in part due to, “…the cultural and individual differences among families in the timing for introducing new eating experiences.” (Sheppard, 2008). In addition, children with DS have a variety of underlying factor contributing to feeding difficulties. These include:

  • Motor (muscle strength & coordination) ***Not simply low-tone***
  • Sensory (sight, taste, touch, etc.)
  • Emotional/behavioral (avoidance, refusal, or “no off switch”)
  • Medical/health reasons (cardiac defects, reflux, seizures, etc.).

It is important to understand reason(s) behind the feeding problem to effectively provide treatment.

Today, we’ll focus on the sensory aspects of feeding. You may think this is an odd place to begin, but I choose it for good reason. Many of the types of oral-stimulation techniques used in feeding therapy are sensory based. Recently, The Speech Mama posted a list of pre-feeding exercises for children with Down syndrome. She wrote,

“The goal of the exercises is to improve strength and mobility of the muscles needed for feeding and also for speaking.”

While I appreciate Speech Mama’s list of techniques, it is important to understand that these techniques are not for promoting speech. Multiple studies and reviews on NSOME do not support their use to improve speech clarity. (This is a huge topic for another day!)

close talkerPre-feeding techniques usually require you to get in your child’s space. You know, really close. This can be overwhelming for your child. I highly recommend that you try out any technique on yourself before trying it on your child. Even better, have the therapist show the technique on you! Then you will really get an idea of how it feels to have these exercises completed. Some may feel great – others intruding – of course, your own level of acceptance will affect the way they feel on you.

When looking at children with DS with feeding disorders we can break children into 4 categories:

  1. Over-responders: Children who have a heightened response to sensations in the mouth. These feelings may be interpreted as painful or dangerous. They may respond to other sensations outside of the mouth and have difficulty focusing on feeding. For instance they may be distracted by the Velcro on their bib.
  2. Under-responders: The threshold for sensations in these children is high. Therefore, they don’t respond to the natural cues given during feeding. The child may see the spoon coming, but not anticipate it by opening her mouth. He may feel the food on his tongue, but lose track of the bite once it slides into the cheeks resulting in “stuffing” the mouth.
  3. Sensory-seekers: Children who interpret input poorly and seek strong sensations to alert the nervous system. These children often like high flavor, crunchy foods like chips or pretzels.
  4. Sensory-avoiders: Children who avoid sensations (like different textures) at all costs because of their low sensory thresholds. I see this frequently in children with DS for the following reasons:
  • Prolonged alternative feeding with oral stimulation (tube feeders)
  • Reflux, medicated or not
  • Ongoing cardiac/pulmonary issues  
  • Poor oral coordination combined with a diet too advanced in texture

Under the care of a feeding specialist (either SLP or OT) you may be using some of the  techniques listed on Speech Mama to advance your child’s feeding skills. However, it is important to recognize when to stop using these techniques. Yes, they can be harmful.

When to stop pre-feeding exercises suggested by your therapist:splaying fingers

  • Averted gaze (looks away from you)
  • Increased rate of breathing
  • Color changes
  • Finger splaying
  • Warding off gesture (hands up in front of face)
  • Crying

Stop as soon as you notice these signals in order to prevent the child from shutting down and refusing future feeding attempts. Continued attempts may contribute to oral aversion and food refusal.

I am thankful that more people today are interested in helping children with DS who have feeding disorders. As you start feeding treatment with your child use caution and insight. Ask questions. And remember with feeding there is no such thing as a quick-fix, but successful eating is possible for most children with DS!

2012 Gift Guide (Just in time for Black Friday!)

2012 Gift Guide

Our team members are frequently asked what kinds of toys we suggest for children with Down syndrome. This year we have new items and a few classics from past lists. We are always interested in making sure the toys/items:

  • Are engaging/interesting
  • Target specific goals related to common therapy objectives
  • Not too annoying (limited bells and whistles)
  • Developmentally appropriate
  • Encourage adult-child or child-child interaction
  • Available locally or on common on-line sites

In addition to myself, the following clinicians worked on this year’s list: Krystin Turner, OT, Emily Mertz, OT, Abbey Kent, PT and Kelsey Snyder SLP. I am so thankful to work with these amazing women every day! Click here for the 2012 List: TCDS Gift Guide

I’m always looking for engaging toys and activities so feel free to share some of your favorites too.

Happy Thanksgiving! Jennifer

A Few (more) of My Favorite Things – Treatment Activities, Web Site Edition

If you could peer into the day of a pediatric speech-language pathologist, it would be filled with many different activities. Phone calls, report writing, parent counseling, material making, physician consultation…oh, and actually treating children with communication/feeding disorders. I will be the first to admit that I work in the most clinically supportive environments ever. My coworkers are bright, resourceful, and creative people. We have beautiful toys, books, and puzzles – and a budget to add more as we need. Two years ago we added a clinical assistant position to make materials, help us order items (like foods and testing materials), and clean all of the oral motor/feeding equipment used during the day. It is an amazing place to work.

This level of support is provided for a very good reason. It enables me to focus on what a speech pathologist does best: evaluating and treating children with communication/feeding needs. More of my time can be spent planning and implementing therapy, rather than cutting and laminating.  During the course of 11+ years of creating therapy plans I’ve found some great websites full of resources. So I’d like to share a few of my favs with you. No one says we have to reinvent the wheel - use what is out there and create what’s not.  I hope they are as helpful to you as they’ve been to me!

Speaking of Speech - Also known as “where have you been my entire professional life?” This site has an IEP goal bank AND materials exchange. Can’t think of a pronoun activity? Want a summer vocabulary theme? It’s there. Have fun (but please try to control your laminating)!

Mommy Speech Therapy - She’s a mommy and a speech therapist with an adorable site. Included are *free* printables for speech sounds as well as great tips for teaching. Does your child have trouble with “f”? This site will give you different ideas to try at home.

Therasimplicity – Bad news: this site does cost money. Good news: if you’re an SLP or homeschooling, it’s worth it. Full disclosure: I have free access (Remember? I work in the best place ever!) You can create, customize, and save materials on the site. You can also choose from MANY worksheets and printable games on topics like articulation – fluency – vocabulary – and more!

Enchanted Learning - Many materials are free to download, others cost money. I’ve used only the free ones to supplement my therapy “theme” weeks. Basic, but good in pinch.

Super Duper - “What? Super Duper? I thought they just sold therapy materials?” Well, they also have “Handy Handouts” on topics ranging from autism to transitions. Check them out.

and finally… Pinterest. Yes. Pinterest. As with anything on the internet one needs to use common sense and good judgement before clicking on a pin. That said, I have found great ideas on this virtual pin board. For instance, this spring I did a caterpillar theme using a classic Eric Carle book. Type in “Very Hungry Caterpillar” into Pinterest and see what you get - Beautiful downloads, creative craft ideas, and fun home activities. Now many people have entire boards devoted to therapy ideas, even subcategories (e.g. receptive language, articulation, etc).

If you have  a favorite web site that’s made life a little easier, please let me know!

Upcoming Speaking Engagements: Greater Richmond, VA and DC

I will be speaking March 16 & 17th in Richmond, VA hosted by the Down Syndrome Association of Greater Richmond.  Friday night is a general presentation on the communication strengths and challenges of children with Down syndrome.

Saturday will include two workshops.

  1. The first, from 10 am - 1 pm,  is for parents and professionals of children birth through early elementary school. “Is there such thing as “Down syndrome speech?”  This interactive session will include speech development in children with DS, types of disorders, and treatment approaches.  
  2. The second session, from 2pm to 4pm, is for parents and professionals of children late elementary through high school.  The session entitled, “Is my child with Down syndrome too old for speech therapy?” will address issues with behavior related to speech, skills strengths in the tween years, and alternative communication at home and at school. 

The Saturday sessions will be held at Bon Air Library, 9103 Rattlesnake Road, Richmond, VA 23235-2939. Childcare will be provided at the Friday night meeting but will NOT be available at the Saturday workshops. For more information please contact the Down Syndrome Association of Greater Richmond.

I will also be co-presenting at the National Down Syndrome Congress Conference 2012 in Washington, DC. Krystin Turner, MS, OTR/L and I are excited to discuss feeding and children with Down syndrome. Look for our workshop: Fantastic Feeders. More info coming soon!

How to have a “homemade” holiday

One of my Facebook friends is having a “Homemade Christmas” this year. She’s making all kinds of fun items for her three daughters instead of buying lots of toys marketed for the season. This got me thinking about items around the house that make great toys (Thanks Emily!). And I can’t tell you how many parents tell me,

“Emmy has a million toys and doesn’t play with them. What she really likes is my cabinet full of pots and pans.” 

Household items that make great toys:

  • Empty plastic fish bowl – great for putting small toys or blocks in and out, also encourages drop and release skills
  • Tube socks – hide items in them. Work on object permanence (understanding that item still exists although it’s hidden) with young children. Have older children try to guess what you’ve hidden inside and describe what they feel
  • Metal bowl and wooden spoon – create noises, work on hand-eye coordination, and target early symbolic play
  • Measuring cups – if you don’t have nesting cups, don’t worry! These will do in a pinch. Also, hold the handle and “talk” into the 1 cup size. The slight echo encourages vocal play!
  • Plastic bin with lid and dry rice (or dried beans) – make a sensory box. Hide small plastic animals or matchbox cars inside and have your child find them
  • Door mirror – don’t hang it on the door, prop it horizontally against the sofa during tummy time so you look in the mirror together
  • Locker mirror – place on the refrigerator so you child can pull up and look at themselves. Work on parts of the face while you make a snack (forget during dinner prep…that would just be crazy)
  • Old 80′s style sweaters with large buttons – encourage “dress up” and pretend play while working on dressing skills. Your OT will love you!
  • Laundry basket – another larger tool for teaching in and out. Ball up those tube socks and take turns tossing them into the basket. This encourages all kinds of early language skills – and your PT will love you!

More ideas? Please share with me in a comment. Dig through those kitchen draws and see what you find!