on how to drink, pick up food, and eat

it may strike some of you as ironic that for all that i talk about emma's love of good food and our culinary adventures, we have to spend a significant chunk of time on eating-related therapy.

because she has Down syndrome, emma has low muscle tone. and, this low muscle tone contributes to a number of challenges she confronts when attempting to do much of what i might take for granted - picking food up, placing it in my mouth, swallowing, holding a cup, and drinking - to name just a few.  so, beyond the learning process that any child must undertake when learning these new tasks, emma is confronted by the reality that oftentimes her body simply just won't cooperate with her will.

and, she does have a strong will. and determination. and tremendous perseverence.

so, it's not for a lack of understanding or desire or repeatedly trying to pick up a piece of cereal and place it in her mouth or drink milk from a cup that impedes her progress.  it's her physiology.

as part of emma's therapy regimine (physical, occupational, speech, and special education therapy), emma is also seeing a specialist who assists with her feeding/eating skills. this therapist teaches us things like don't even attempt using sippy cups - they are unwieldy, hard to hold, and won't promote the pursing of the lips necessary to really sip/suck out the liquid. this, of course, means that the 9 - yes, 9 - different sippy cups we have purchased in the hopes that one of them would be the right fit for our little apple cheeks are going the way of hand-me-downs to her future cousin. 

instead, we have learned that we should be using a regular straw to encourage emma to purse her lips around the straw and eventually strengthen her mouth muscles enough to suck liquid through it. once she does that, she can move on to other sippy-cup-like, non-bottle milk delivery devices.

we have also learned that we should be stimulating the inside of her cheeks with a small tooth-brush or similar object, so that her muscles "come alive" and she develops a greater awareness of them.

we were also encouraged to give emma dried fruit to develop her mouth muscles - it's tougher, yet pliable and healthy, so a good option for mouth muscle and food manipulation development.

and, we have been shown different techniques for encouraging emma's development of the pincer grasp (the use of the thumb and forefinger) to pick up a piece of food, like a blackberry or a piece of dry cereal. in addition to repeatedly encouraging it, our occupational therapist told us to try to help her to use only the thumb and forefinger to grasp something by periodically holding down the other three fingers. it seems to be working - she is getting a feel for what it's like to use only the thumb and forefinger and begin to grasp food and other items.

it may seem like these are fairly obvious techniques, but when you are thinking each day about how to teach your child how to lift her torso and move her legs to eventually crawl, or strengthen her torso so she can sit upright without flopping forward, or develop arm strength sufficient to reach over her head to grab a toy and pull on it, all of the other pieces of the puzzle don't necessarily seem so obvious or clear.

to the contrary, learning these techniques has been illuminating and humbling; there is so much we don't know. and, aside from the therapist and a handful of parents of children with Down syndrome, we really don't have other folks to turn to for advice. (if any readers have suggestions, i warmly welcome them!)

i would imagine that unless you have a child with these issues, it's hard to even conceptualize having to focus on them. indeed, from what i have been told by emma's therapists and other parents, most of these skills develop naturally over time for typical children. they require encouragement and assistance, for sure. but, not to this level of detail or this degree of intensity.

it requires daily, repetetive instruction and assistance and consciousness on all of our parts - mama's, dada's, and emma's. we have to will these things to happen. and, they do, but only because we are all focused so intensely on them each day.

. . .

in the spirit of sharing what we have learned, here are three of the food products that have helped us work with emma, particularly on the mouth strengthening, pincer grasp development, and self-feeding. of course, we use many, many others, including lots of fresh veggies and fruit -  like blackberries which fall apart easily in her mouth and dissolve.

1. Mum-Mums (a rice-husk,cracker-like product without any additives or extra flavors or sugars that is easy for her to pick up, hold, and manipulate and one of the first things she was able to self-feed successfully).

2. dried fruit (emma's therapist suggested that this is a great for us to cut into smaller pieces for her to manipulate in her mouth with her tongue and attempt to chew with her four tiny teeth. and, they are great for her to pick up on her own and attempt to self-feed). So far, we've tried dried mango and dried apricots to mixed reviews from our little apple cheeks.)

3. organic Kamut Puffs cereal. this organic cereal has no sugar or additives. just Kamut. it's wholesome and nutritious and tiny, yet sturdy, enough for emma to practice her pincer grasp and self-feed. it's really quite amazing to watch her pick up each individual piece of cereal, manipulate it in her hand and paw it into her mouth. many pieces fall by the wayside, for sure. (that's where the doggies come in) but, each piece she does feed herself is an accomplishment and forms part of her growing repetoire of skills.

1 comment:

  1. You do realize, I'm sure, you will eventually have to publish these postings as a book!......And what a boon that will be to other Down's Syndrome families!