Feeding Issues Q & A, with P. S.

March 14th, 2014

 

Question:  I was just coming over to ask what resources you recommend for learning to work with special needs kids. (I know you’re very busy; this question is just for whenever you have time!)

Once a week I get to visit with some really special little ones in an orphanage, and I don’t know if there’s much that I can do to help them get ahead…except love on them. But I’d like to try.

For example: I just fed a little girl with Down syndrome. She’s completely bed-ridden and has spent her whole life tied up in a crib, so I don’t know what my feeble efforts help, but she does extreme, extreme tongue thrusting. So, I just kept “shoveling” food in, and it all kept falling out.

Anyway, that’s just one example. Do you have any ideas of how can I learn to help more?

~Phyllis

 

Answer:  Phyllis, reading your comment made the tears come to my eyes.  Thank you for the awesome thing you are doing.

Yes, there are many ways you can give the children real developmental help!

First, an appeal to all you wonderful blog readers out there!  If you have experience helping children with moderate to severe developmental disabilities, with or without backgrounds of institutional neglect, could you please leave a comment to this post with encouragement and recommended resources for Phyllis?

A few feeding suggestions that may help with tongue thrust–

First and most important, keep the feeding sessions calm and low-key and positive.  If you begin to feel stressed, back off a bit and regroup.  Stress will communicate itself to the children and will counter the best techniques.  It’s taken years of the bad stuff to get them where they are and it will take years of the good stuff to rehabilitate them.  It will take patient, loving work over time.  Feeding has likely been a neglectful and even traumatic experience for the children you’re working with, and you want to begin to communicate that it can be a nurturing, comforting, connecting, pleasurable experience.  Think breastfeeding for a dearly loved newborn.

Can the little girl with Down syndrome hold her head upright at all?  If she’s receiving an adequate diet, that will help to give her energy to begin to make gross motor progress, and then after that, the fine motor and feeding skills that are built on the foundation of core strength.

Physically, working on her core strength, and in the meantime, providing her with enough outer supports to enable her to eat with upright posture will help.  If she can hold her head upright, then you can use rolled-up towels and/or blankets to prop her up as needed into an upright sitting position with her head upright.  Letting her feet rest on a surface rather than dangling is also helpful.

As for the actual feeding technique to use, one we have found to help all three of our kids with low muscle tone and feeding issues is this–

Working from the front, not side, as you give her each bite, use the pointer finger of your other hand horizontally under her chin to encourage her to keep her face upright and keep her chin from sinking down onto her chest. Using a small spoon (let me know if we can send you some of these maroon spoons), feed the child with the tip of the spoon pointing directly into her mouth with the bowl of the spoon inside her mouth. Press the spoon onto her tongue as firmly as she will tolerate and wait for a response. Remember to keep her chin up so she’s looking straight ahead and keep a calm, cheerful expression on your face.

You want her to use her muscles as much as possible to close her lips around the spoon, move the food to the back of her mouth, and swallow.  Do your best to avoid simply scraping the food off the spoon onto the roof of her mouth.

It will be a messy job and each bite may be fed to her several times, but eventually, you will begin to notice progress, as we have with our three.  Many times, children with low muscle tone fed with propped bottles with large holes cut into the nipples have never developed proper lip closure or a good sucking ability.  After more than two years of work on oral muscle tone, Katie is just now beginning to suck fruit and veggie purees out of pouches.  Pouches like this can be used over and over again, and I’d be happy to send you some.

We hope Katie will eventually progress to independently straw drinking the thickened fluids she’s now drinking from an open cup with some prompting and support from us.  Incidentally, we wouldn’t give these pouches to our kids who don’t need the extra developmental help, but they are perfect for sucking practice for little ones with developmental challenges because you can motivate them with tastes and give them an immediate reward for their effort.

When we tried the pouches with Katie, she first (1) wouldn’t have anything to do with them, then after many months, she (2) tolerated them but kept her mouth slack and allowed the puree to run out of her mouth, then after more months she would (3) keep the puree in her mouth and pull away from the nozzle to swallow, then after more months she would (4) close her lips around the nozzle to swallow but keep them slack in between swallows, then not too long after that she began to (5) make little attempts at sucking!  From there she has progressed quickly to (6) sucking more and more strongly and consistently!  Victory!

All three of our children with low muscle tone need/needed their liquids to be thickened to keep them from choking, spluttering, coughing, gagging, aspirating, etc.  If you thicken liquids with cereal or similar foods, the liquids will be bound and not be accessible as liquids to the body.  Products like Thick-it or guar gum will thicken the liquids to a consistency that the child can handle while not binding the liquids, so that they are used as liquids by the body rather than as solids.  Does this make sense?

It is vital for the children’s health that they stay well hydrated, but many times they will have difficulty swallowing thin liquids like water.  There are different methods of getting sufficient liquids into children with swallowing difficulties, including thinning out thicker purees with water to the right consistency.  But what worked best for our three was to thicken their liquids with Thick-it or guar gum. Thick-it worked far and away the best of all the thickeners we tried, with guar gum coming in second. We found a good source online and after several orders by the case, we were contacted by the seller with a discount offer since we were clearly ongoing customers.

In Verity’s case, we thickened breast milk and gave it to her in a bottle and then as she grew older, from a straw cup.

In Katie’s case, she went from a naso-gastric tube to drinking her thickened liquids from an open cup, and as I described above, she is slowly progressing to the eventual goal of independent straw cup drinking.

In Tommy’s case, we gave him thickened liquids from a bowl with a spoon (like pudding) when nothing else worked, and even at that, he never came close to getting a healthy amount of liquids for his body weight until he got a feeding tube.

For children who do not know how to chew, one of the first skills they need to learn is to use their tongue to move the food from the middle of their mouth over to their teeth. Even before that, they may need to learn to move their tongue from side to side within their mouths. A strategy I used successfully with Katie to encourage this skill was to put a candy stick (like a candy cane) alongside her tongue. This gave her an immediate flavor reward for moving the tip of her tongue toward the candy. This technique won’t work until oral defensiveness has been overcome. Also make sure the child doesn’t have an overactive bite reflex to prevent choking.

Two tools that may be useful for oral motor awareness and strengthening are this vibrating teether and a set of chewy tubes like this. Again, please let us know if we can send you any of these tools!

Another way to help the children in the lying rooms–

Many if not all children who suffered institutional neglect will have sensory issues, often to the extent that it interferes with normal daily life.

For instance, Katie couldn’t stand the feeling of a toy in her hand and would push everything away with the back of her hand.  Obviously, she had developed zero play skills!

One simple thing you can do to help children who don’t tolerate tactile stimulation on their hands is to desensitize their palms by rubbing them on a large variety of surfaces for as long as they will tolerate it without fighting.  Even if you start with a fraction of a second and work up to three seconds, that’s progress.

Within a few days of doing this over and over again throughout the day with Katie, she began reaching out to pick up objects for the first time!  Even if she then dropped them like a hot potato, she had taken the first essential step!  She progressed from there to holding and playing with noisy/musical toys, and eventually to holding her own cup to drink and holding a spoon or fork long enough to get a bite into her mouth.

Bless you, and keep up the good work!  In God’s eyes, it is holy work that you are doing!

Love, Susanna

 

P. S.  I must thank our son Daniel (one of our approved respite care providers through our home study agency) for enabling me to accompany Joe on his trip to another Samaritan Ministries International board meeting.  It’s why I finally had time to answer this question.  And to get caught up on sleep.  And to look through wedding photos.  [To view the wedding day family photo, click HERE.]

Dan the Man doing his nightly task of making up the next day’s drink bottles~

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Tiny travel companion Ben~

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11 Responses to “Feeding Issues Q & A, with P. S.”

  1. Deanna says:

    I love your family photo!
    Enjoy your time away!  Sleep, Mama, Sleep!  :)

  2. Dannette says:

    I taught my daughter who has a dx of spastic quadriplegic cerebral palsy how to drink from a straw by starting with shakes.  I would dip the straw in the shake and let her taste the end.  Then I progressed to sucking a bit into the straw, placing the straw in her mouth and blowing the other end gently, so the shake went from the straw into her mouth.  I did this several times a week for just a couple of weeks and amazingly she picked up the idea and was able to start sucking melted shake.  Now she takes all liquids like that.  I know not everyone will agree with the technique I tried, but I was desperate to get her off of the bottle (she was 4) and there was no chance of her drinking from a cup independently and she also did not have a g tube, so I had to get creative to help her get liquids without a bottle.  Also, she had been in a neglected environment for her first 2.5 yrs of life, so we were just playing catch up on so many things.

  3. Susanna says:

    I did that with Verity, too, Danette! Her OT suggested cutting a short length of drinking straw, like 3-4″ long, dipping it into the puree, then putting the end of it into her mouth. She was about 9 months old and caught on before the OT had gotten out of our driveway that day. Worked wonders for her! Thanks for reminding me of that great idea!

  4. Fatcat says:

    What a great son your Daniel is.  Isn’t it wonderful to have someone you can depend on like that? 

  5. Michaela says:

    Love the pic of “Dan the man”.  I would also love to hear some of your kids thoughts of their daily routine. You’ve done that a couple of times before and every time I see a pic like that from Dan shaking the bottle or Laura holding Verity I wonder how things are for them. :-) 

  6. Lauren S. says:

    So this is total ignorance speaking – why is the goal of sucking so important for Katie’s oral development?  What does this ability do for her in the long run?  I’m curious because I remember this being a big deal for Verity as well, so it clearly has long-term effects.  I just don’t know what those long-term effects are!
    And thank you for the family picture!  You all look so lovely and happy together – a picture of His sufficient Grace.  Also, your hair looks fantastic!  I love the way you have it done in that picture!

  7. Phyllis says:

    Wow! Thank you, thank you, thank you! I started an email to answer you, and then I saw this. I think I’ll send that email, instead of sharing more details about particular little ones here. I can’t thank you enough, Susanna, and I would love to correspond with anyone and learn from whatever you all can add here, too.
     
    Oh, I will add the the children I get to feed are one or two steps beyond bottles. They don’t let us feed the ones who only get bottles. So, we’re dealing with puree (very liquid, but with spoon and bowl) or mash (a little thicker).
     
    And a prayer request: we are in southern Ukraine. Please pray for peace here! My orphanage visits are actually on hold–hopefully just for a little while!–because of the turmoil.

  8. Michaela says:

    Lauren S – I think it’s because it prepares/helps for talking. But maybe I’m totally wrong. 

  9. Susanna says:

    Lauren, Michaela is right, working the muscles needed for sucking will help strengthen and refine the muscles used for talking, but more immediately, as soon as she can drink from a straw, she will be independent in drinking her thickened liquids from a straw cup. For nearly two years, every time she has gotten a drink, we have needed to assist her. She needs much less assistance now than she did when she first learned to drink from a cup, but we still have to hover because of the risk of behaviorally-caused spills from her open cup. For her, the ability to suck means more independence, which in this case is a very good thing! (Sippy cups are not recommended for children with low muscle tone, as they can encourage tongue thrust.)

    Thank you for the compliment on my hair–it’s a new cut for me and I’m not completely sold on it, plus I RARELY style it thataway since it takes longer and is impractical and irritating to have my hair in my face! Probably more info than you wanted to hear about it, haha! Anyway, it’s still an open question in my mind!

  10. Jen says:

    Such great info.  I find it all so interesting, pertaining to my oldest daughter, 13 yrs, who has a rare genetic disorder (she is NOT adopted.). So many kids with her genetic disorder have mouths full of teeth, but do not chew.  Our daughter has always needed her food puréed (I own THREE  Ninja food processors.  We have broken two Magic Bullets ;-) ).  At one point she was able to eat small pieces of very soft food, broken into tiny pieces.  She would pick them up herself and put them in her mouth.  But, as she got older we noticed her basically swallowing these pieces whole.  She was too impatient to use her tongue to soften the food.  Long story, short…she choked so hard on her food one day, we seriously thought we were going to lose her.  So, we decided to feed her exclusively puréed foods.  Despite this, our daughter has been able to hold her own cup for years.   And she can feed herself well with a spoon, but not without supervision, as she often throws the spoon after a bite or tries to shove the bowl of food off do the table.  One of my goals would be for her to feed herself independently with a spoon.  We are looking into have in-home OT come to give me some more insight.

  11. Missy says:

    I just wanted to tell Phyllis she is in my prayers and thank her for doing what she can for those kids.

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