From milk to table foods: a parent`s guide to introducing

A
resource for
families
and others
interested in
Down syndrome
and related
disabilities.
January/February, 1999
In This Issue
1
From Milk to Table
Foods: A Parent’s
Guide to Introducing
Food Textures
10
Cooking Made Easy 12
Uncommon Fathers: 14
Reflections on Raising a Child with a
Disability
The Enoch-Gelbard
Foundation
From Milk to Table Foods:
A Parent’s Guide to
Introducing Food Textures
by Joan E. Medlen, R.D.
Reviews
Schooling Children
with Down Syndrome: Toward an
Understanding of
Possibility
Volume 3, Issue 3
15
Share Your Thoughts 16
L
earning to eat foods, from the
first bites of baby cereal to regular table foods, is a long process. For children with Down syndrome, learning to coordinate
tongue and mouth movements
from the first bites of baby cereal
to eating table foods takes longer
and can cause parents concern. It
helps to understand the developmental stages and skills
children must go through
learning to chew. This article
discusses what chewing skills
to look for before changing
the texture of food and how
to encourage and teach your
child with Down syndrome
to chew different foods. With
this information you can sit
back and enjoy the fun and
messiness of discovering
foods together with your
child.
There is little information available to parents explaining what to
look for when introducing new food
textures to children with Down syndrome. Most information is written
for children without disabilities and
presents the introduction of different food textures as an age-related
Continued on page 3
From the Editor
Disability Solutions
Volume 3, Issue 3
Sharing Hindsights
In the years since my son was born with Down syndrome, my work as a dietitian
has changed. At times I look back at struggles we encountered (medically and
educationally) and realize that there was information available I would have found
useful during stressful times. Hindsight is like that. The main article in this issue
of Disability Solutions is the result of one of those situations.
More often than not, children with Down syndrome take longer to pass through
all the different food textures than other children. Usually, from a “clinician’s”
point of view, it is not “problematic.” Yet from where I sat as “Mother,” it sure felt
problematic! The article, From Milk to Table Foods: A Parent’s Guide to Introducing Food Textures includes specific information regarding the process of learning
to chew foods and how to tell when it is time to begin to introduce new textures
to your child with Down syndrome based on ability, not age. There are also tips to
help teach your child how to chew and some suggestions for problem-solving common rough spots.
If after reading this article, you are wondering if you should seek the help of a
feeding team, here are some questions to consider:
√ Am I talking to more than one or two professionals about feeding (for instance,
what foods my child eats, oral motor skills and exercises, or other medical conditions that affect feeding)?
√ Am I getting advice from more than one or two professionals about feeding that
is difficult to blend together or is conflicting?
√ Is my child’s eating or feeding taking a lot of time and therefore a lot of time
away from other family members?
√ Is my concern about my child’s eating or feeding taking time away from family
due to stress or worry?
√ I would like to have one, concise plan for helping my child learn to eat different
textures and participate in family meals (yes/no).
If you answered yes to two or more of these, I highly recommend you seek out a
feeding team in your community. Feeding teams consist of a multidisciplinary team
dedicated to solving concerns about eating and feeding. They are usually associated
with the children’s hospital in the area.
Last, this article would not be complete without pictures of many young children
with Down syndrome learning about food. Thank you to all the parents who shared
pictures of their children with us. Unfortunately, we could only include a few (though
I got to enjoy all of them). The children in the article are:
Page 1: Stefanie Ward (now 16), Virginia Beach, VA.
Page 3: Andy Medlen (now 10), Portland, OR.
Page 5: Mackenzie Bockwoldt (now 5), Frankfort, IL.
Page 6: Avi Leshin (now 5), Corpus Christi, TX.
Page 6: Bridgett Richards (now 7), Troy, MI.
Page 8: Madison Duffey (now 5), Philadelphia, PA.
Page 9: Stefanie Ward (now16), Virginia Beach, VA.
January/February, 1999
Disability Solutions
From Milk to Table Foods:
A Parent’s Guide to Introducing Food Textures
Continued from page 1
of baby food are introduced, commonly between
four and six months of age.
That first bite of baby cereal is a big event for everyone involved. Not only is it a new developmental
stage, but it is a change in the relationship between
your baby and everyone around her. Eating requires
more participation and interaction from her. Those
who feed her will learn to listen to her cues regarding how fast or slow to present each bite. In these
early interactions the groundwork is laid for other
give-and-take situations. It is a natural time for parent and child to develop an awareness of overall
body tone, stamina, and to develop a feeling of
mutual trust and respect.
Those first bites of baby cereal are also very
messy. Generally babies will lose a certain amount of
the cereal as they try to coordinate their tongue and
jaw movements to this new, foreign food. Babies
with Down syndrome often lose more food than
those without Down syndrome with these first bites.
If too much food is lost, your baby’s jaw movements
may still be more of a suckling pattern—tongue and
jaw thrusts resulting in loss of food—than a sucking
pattern. A good rule of thumb to use is if your baby
with Down syndrome seems to be losing 75% or
more of the food from each bite, it might be best to
wait a few days and try a bite of cereal again. Once
she is eating baby cereal successfully, follow the
typical pattern for introducing first baby foods. This
category of foods is called strained, pureed foods
which includes baby cereals; jarred, strained baby
foods; and homemade, pureed, strained foods.
If your baby continues to lose a lot of food with
each bite due to jaw and tongue thrusts, there are
some things you can do to help her learn to control
her mouth and tongue while eating:

Check your child’s positioning. The best position
is as near a sitting position as possible, with her
legs, head, back, and feet supported as needed.

Your baby should be able to look straight ahead
at you or the person feeding her during her
table. The ages for different types of foods (strained
baby food, pureed, ground, chopped foods) reflect
the typical age that certain tongue and jaw movements develop. Some children with Down syndrome
will follow these tables and have little trouble with
the introduction of foods, or chewing. Others will
experience delays because of lower muscle tone or
a smaller mouth cavity. Understanding chewing development and the key tongue and jaw movements
that signal readiness for a new food texture - such
as going from strained, pureed foods to thickened,
pureed foods - is essential to the process (table 1).
Before your baby is offered her first bite from
a spoon, she is getting her food through breastfeeding or from a bottle. The mechanism for swallowing during that time is called suckling, which is
a combination of extension and retraction of the
tongue, forward and backward jaw movements, and
a loose closure, or connection, of the lips around
the nipple.
Throughout those first months of breast or bottle
feeding, your baby builds strength in her tongue
and mouth and a new pattern begins to emerge
which is called sucking. Sucking includes a more
rhythmic up and down jaw movement, an elevation of the tip of the tongue, and a firm closure of
the lips around the nipple, which creates a negative
pressure in your baby’s mouth. It is usually shortly
after this sucking period begins that the first bites
Continued on page 5
Attempts to hold
bottle.
Decrease in gag
reflex.
Infant cereals
should resemble a
“Heavy Thick
Liquid” or
Applesauce.
Rooting
Breast milk or
formula
Gradually increase
the thickness of
pureed foods with
baby cereal, wheat
germ, or potato
flakes
Shows interest in
“guiding” spoon.
Strong Sucking,
Early Munching
Thick Puree
Mashed, cooked
vegetables,
scrambled egg,
mashed softboiled egg,
cottage cheese.
Decrease in gag
reflex.
Increased use of
cup.
Grasps spoon and
“plays” with it.
Munching
Ground
Heed choking pre- Do not mix textures (such as
cautions.
spaghetti with
meat balls, peas in
mashed potatoes)
Emergence of up- Side-to-side moveand-down chewing ment of foods with
tongue.
motions.
Other foods include
blended, strained, Provide opportunibaby foods (jar or ties for chewing
using teething type
homemade)
foods (pretzels,
toast and so on)
Sucking
Puree
Suckling
Pre-Food
Indications The beginning of a Strong, well-desucking motion.
For the
veloped sucking
Next Step
motion.
Precautions
Types of
Food to
Offer
Feeding
Skills
to Note
Chewing
Stages
Food Type
Messy self feeder,
switching backand-forth between
utensils and fingers.
Well-practiced at
mature rotary chew
Table foods
Avoid easy-choke
foods (see table 2)
Individualize for
preferences and
abilities.
Introduce crunchy
and chewy foods to
build jaw strength.
Chop regular table
foods in small, fine
pieces.
Introduce finger
Monitor easy-choke
foods that are easily foods (see table 2)
chewed.
for safety. Modify
list as appropriate.
Assists with feeding
and drinking with
increasing
independence
Chew progresses
to a mature rotary
chew
Chopped Foods
Chewing Development with Suggested Food Textures
Disability Solutions
Volume 3, Issue 3
Table 1
January/February, 1999
Disability Solutions
From Milk to Table Foods: A Parent’s Guide to
Introducing Food Textures
Continued from page 3
swallowing safely. As your baby gets accustomed
to strained, pureed foods, she will begin to develop
a strong sucking action.
Once your baby is proficient with strained,
pureed foods, which you can tell by the stronger
sucking action, it is time to begin thickening her
foods. While eating these thickened, pureed foods
your child learns to use her tongue to move food
in her mouth. To thicken foods, add instant potato
flakes, wheat germ, bread crumbs, or dry baby cereals. Using wheat germ to thicken foods is also an
excellent way to increase fiber. When you thicken
strained, pureed foods, there are a few things to
remember:

Foods will continue to thicken after you are done
mixing. Check the consistency of the food every
three bites or so. You may need to add some liquid
so it doesn’t become too pasty.

Use a thickener (baby cereal, potato flakes) that
makes sense for the food you are thickening.
Strained pears with potato flakes have a funny
flavor. Rice cereal might be a better choice because it has a less distinctive flavor.
mealtime. Looking up to see the person feeding
her causes her to lift her head back and makes
swallowing more difficult.

Spoonfuls of food should be small. Too much food
makes the process more tiring and frustrating for
both of you. It is easier to move a small amount
of food around in her mouth than a large one.

Present the spoon from slightly below your baby’s
mouth. As she accepts the spoon, place the bowl
of the spoon firmly (but do not push hard) on the
center-front of her tongue. This helps her keep
her jaw and tongue from thrusting forward.

Remove the spoon straight out of her mouth (do
not lift the spoon to scrape food off ). This will
encourage her to use her lips to close around the
spoon to get the food.

Watch your baby’s cues. Learning to handle food
is not easy. Wait for her to completely finish her
bite before offering her another. It may take her
extra time to coordinate her movements between
bites. Watch for her receptiveness for each bite
rather than providing the spoonful of food before
she is ready.

Watch for signs of fatigue. Tiring early in a meal is
very common for children with Down syndrome,
particularly in the beginning stages of eating. Try
not to push her past her limit to frustration. If she
tires too early to get enough calories, consider
more frequent meals for her (6-8 times in a day).
Focus on increasing the length of each meal until
one or more can be eliminated from the daily
schedule without sacrificing calories.
Continued on page 6
Give yourself and your baby some time together at
this stage. It takes practice to develop a rhythm you
are both comfortable with.
Some children will have tongue thrusting movements and continue to lose food as they eat. If she is
eating her foods without coughing or gagging, then
she has most likely found a way to adapt her tongue
movements. If she is coughing, gasping, gulping, or
gagging after most bites of food, check with your
doctor or speech pathologist to make sure she is
Disability Solutions
Volume 3, Issue 3
From Milk to Table Foods:
Continued from page 5
During this stage (thickened, pureed foods), your
child will develop what is called a phasic bite reflex
which is a rhythmic bite and release pattern that
looks like she is opening and closing her mouth
when something touches her gums (a toy, a spoon,
some baby food, or your finger). This is a good time
to let her explore with a spoon or an empty cup.
Although this stage does not signal time to change
your child’s food texture, it is an important step to
being able to accept different textures. Allowing her
to chew on things such as wash cloths and toothbrushes help her get used to the feeling of different
textures in her mouth. This is helpful later when she
is trying out new and different foods.
The next chewing stage to look for is munching,
which is when your child moves food in her mouth
by flattening and spreading her tongue while moving her jaw up and down. For some children with
Down syndrome, this may look something like a
flattening on the roof of the mouth followed by a
pushing outward of the tongue to move the food
as she opens her mouth.
When you see she is beginning to munch, it is
time to introduce some finely ground foods, such
as cooked, mashed vegetables, scrambled eggs, or
cottage cheese. This is your child’s first experience
with texture in her food. She may be surprised or
react strongly. Be prepared for a lot of messes. If
she rejects a food (throws it, spits it out, smears it all
over), don’t take it personally. Offer a small amount
again in a few days. Eventually the food will make
it to her mouth.
It is not uncommon for children with Down syndrome to continue to struggle with low oral motor
tone at this stage. Some children may find ways to
move foods with their tongue that is slightly different from what is considered “typical.” Again, if your
child is choking, gasping, or gagging a lot, ask for
help from your doctor or speech pathologist. If,
however, she is handling foods without choking
or gagging, but is having trouble coordinating her
chewing or tongue, here are some things you can
do to help encourage her eating skills:

During a meal, sit directly in front of your child.
Place your thumb on her chin below her lower
lip. Your index finger will be back by the joint of
her jawbone and your middle finger under her
jaw behind her chin. Gently encourage her jaw
movements in an up and down action. Do not
January/February, 1999
Disability Solutions
A Parent’s Guide to Introducing Food Textures
force this movement. If she protests and asks
you to remove your hand, it’s best to respect her
wishes.

Place food (scrambled eggs and small graham
cracker pieces are good) between her gums or
molars on one side of her mouth. This encourages
her to move her tongue to get the food.

If your child seems to prefer to chew on one side
of her mouth, place food on the other side. This
works especially well if it is a favorite food.

Offer toasted bread strips, strips of soft cheese,
and other appropriate finger foods (see table 2).
It is safest to hold on to one end of the food as
she chews so she doesn’t get too much at once.

Do not mix food textures! Foods that have more
than one type of texture such as spagettios , most
junior foods (spaghetti with meatballs) or lumpy
ground foods, require different chewing movements. It is confusing to your child to have more
than one texture to deal with at a time in a bite
of food.

To encourage her to move her tongue from sideto-side (a skill needed for rotary chewing), offer
ice cream cones to lick or place small dabs of
smooth peanut butter in the corners of her mouth
to lick off.
Table 2
Foods to Watch
Some foods require caution for any
child who is still learning to handle
foods in her mouth. Children with Down
syndrome often need to be cautions
with these foods until age 5 or beyond.
If your child has not yet mastered a
“mature rotary chew,” only offer these
foods with strict, attentive supervision
(or not at all).
Hard, Small Foods:
Nuts
Seeds
Popcorn
Raisins
Hard candies
Raw carrot sticks
Chips
Snack puffs
Hot dogs
When your child is able to move foods from side-toside with her tongue, it is time to introduce finely
chopped foods. Use foods from the family meal
that you chop very small. It’s best to begin with
foods that are easy to chew, such as chopped pasta,
cooked vegetables, cooked potatoes (without the
skin), or canned or very ripe fruits. Let her watch you
remove her food from serving dishes so she sees it
is the same as what the rest of the family is eating.
This usually makes these new foods particularly
interesting to experiment with and eventually eat.
As she becomes comfortable with finely chopped
foods, gradually increase the size of her foods to
bite-sized pieces.
Slippery Foods:
Whole grapes
Hot dogs
Sausage
Olives
Large pieces of meat
Continued on page 8
Disability Solutions
Volume 3, Issue 3
From Milk to Table Foods:
Conginued from page 7
fatigue from the work of eating. Regardless of the
reason, it is something to keep in mind at meal
times, particularly as you help her learn to eat. It
may also be something to consider at day care,
preschool, and as your child enters school; she may
need more time to eat her lunch and snacks.
Learning to eat foods and progress through
textures is more than developing chewing and
swallowing skills. Though these skills are necessary
to successfully eat regular table foods, there are
many things that must be considered beyond chewing for your child to be able to eat well, including
what goes on during the family meal. As with most
things, there will be times of frustration along with
joy in accomplishments. Sometimes, in the middle
of the frustrations we feel from day-to-day living,
it is hard to remain positive. When you are feeling
frustrated, here are some things to remember that
may be helpful:

Learning to eat is a messy, messy process. This
can be the hardest to remember. However, a lot
of learning takes place in the midst of the mess.
While exploring food, children learn about the
feel, smell, and temperature of foods (and sometimes the sound as they plunge to the floor).

Children with Down syndrome often take longer
to progress from baby food to regular table foods.
However, that doesn’t mean you have to forfeit
table manners. Your child is learning about table
manners from everyone around her. It’s a great
time to remind others to eat politely and to encourage the same, when appropriate, for your
child with Down syndrome.

Try to make mealtime pleasant. Learning to eat,
use utensils, and try new foods is a lot to do.
Children with Down syndrome may become
overwhelmed if too much is going on around
them during meal time. Try to limit the amount
of extra activity where your child is eating or at
your family table by turning off the television,
radio, video games, and so on.

Remember your child is always growing. The seating position that is best for your child will change
as she grows. It is most important to consider
During this time, your child will slowly work toward a mature rotary chew, which uses the tongue
to move food from side-to-side in the mouth along
with a coordinated movement of the jaw in vertical, lateral (side-to-side) and diagonal movements.
A mature rotary chew looks like a smooth, circular
motion while the jaw opens and closes to chew. For
many children, with and without Down syndrome,
this is easy to observe because it is difficult to do
with their lips together, eliciting the familiar comment, “chew with your mouth closed!”
For children with Down syndrome, it is quite
helpful to understand what your child is learning
to do as you introduce new food textures. Rather
than using age to decide when to introduce a new
texture, watch your child eat and look for the skills
she needs to progress.
It takes children with Down syndrome longer to
chew their food, which continues for many years
or may be life long. This could be because of low
oral motor tone, motor planning (coordinating the
movements to do the chewing), or from general
January/February, 1999
Disability Solutions
A Parent’s Guide to Introducing Food Textures
upper body support and a place to rest her feet
so her knees are at a 90-degree angle. These two
things will affect her ability to feed herself as well
as her ability to chew and swallow safely. If she has
to add the work of supporting her upper body or
her legs while eating, she will not want to also
work on using her spoon or fork.

Eating takes time for children and adults with
Down syndrome. It is worthwhile to allow for extra
time whenever possible.

Offer new foods one at a time. As your child grows,
continue to introduce new foods along with old
favorites. This is good for all family members. Do
not force her to try “just a bite.” Instead, offer a
small amount over the course of many meals.
Consider it a side dish. Eventually she’ll give it a
try.

Establish a family meal time. It is important for
your child to be a part of the family meal. Whenever possible, even as a baby, include her in the
family meal time so she can see how others eat
and talk with each other. Try to serve foods that
are as similar to what the rest of the family is eating (either in color or type of food) as possible.
to ask questions about feeding your child. Each
team usually has a speech pathologist, and an occupational therapist, and some will have dietitians
who all are familiar with feeding concerns. In some
cases, it may be necessary to consult a group of
professionals who specialize in feeding concerns.
If you are unsure if you need to consult a feeding
team, ask your pediatrician or call a hospital that
specializes in treating children. Ask to speak to a
pediatric dietitian or the feeding team.
Learning to eat is a delightful time for parents
and children. It’s a time full of new experiences
and creative ways to explore foods, utensils, and
the reactions of others. Understanding when and
why to introduce new foods to children with Down
syndrome makes it possible to move forward while
you relax and enjoy the messes together.
Thanks to Jane Grosfield, M.A., CCC-SLP and Julia Borgreen,
M.A., CCC-SLP of the Scottish Rites Center in Great Falls, MT,
for reviewing the manuscript.
Joan E. Medlen, R.D. is a mother of two boys, one who has
Down syndrome. She is a registered dietitian, member of
the Clinical Advisory Board for the National Down Syndrome
Society, and editor. She resides with her family in Portland,
Oregon
References:
There are times when despite your best effort, or
because of medical complications, your child with
Down syndrome may not be moving from baby
1. Jaffe, M. “Feeding At-Risk Infants and Toddlers,” Topics in
cereal to table foods in the way you expected. Early
Language Disorders, December, 1989, p. 13-25.
Intervention Team members are available for you 2. Gisel, E., Lange, L, Niman, C. “Tonge Movements in 4- and
5-Year-Old Down’s Syndrome Children During Eating: A
Comparison with Normal Children,” The American Journal
of Occupational Therapy. Vol. 38: 10, 1984, p. 660-670.
3. Feucht, S. “Guidelines for the Use of Thickeners in Foods and
Liquids,” Nutrition Focus: For Children with Special Health
Care Needs. Vol. 10:6, 1995.
4. Ekvall, S., ed. Pediatric Nutrition in Chronic Diseases and
Developmental Disorders. Oxford University Press, 1993.
ISBN: 0195072243.
5. Kedesdy, J., Budd, K., Childhood Feeding Disorders. Brookes
Publishing, 1998. ISBN: 0557663165.
6. Lowman, D., Murphy, S. The Educator’s Guide to Feeding
Children with Disabilities. Brookes Publishing, 1999. ISBN:
1557663750.
7. Satter, E. How to Get Your Kid to Eat…But Not Too Much.
Bull Publishing, 1987. ISBN:0915950839.
Disability Solutions
Volume 3, Issue 3
Book Review
Schooling Children with
Down Syndrome: Toward an
Understanding of Possibility
Reviewed by Denise Bockwoldt, M.S., R.N.
are burdensome. These children are educationally
segregated and denied membership in the school
community. The “squatters,” are children who are
still viewed as community burdens, but space is
made available for their learning needs in the perimAs my daughter with Down syndrome approach- eter of the regular classroom. They are often taught
es her final year of preschool, I have been doing a “functional skills” rather than an academic curriculot of reading about education: both “regular” and lum. The “citizens” are children who are viewed as
“special.” I worry about the transition to our public valued human beings, not as social burdens. They
school and how well she will learn. Like many other are not segregated and their participation in the
parents of children with disabilities, I have explored regular classroom is considered essential for all the
the philosophy of inclusion and strategies that will students. The author states that the devaluation
foster my daughter’s academic and social success. of children to “alien” or “squatter” is more a choice
With this in mind, I couldn’t wait to read this book. made by people who are in positions of authority.
The most debatable topic in the book is the
However, the title turned out to be somewhat
misleading. While the book offers a deep philo- author’s question: “Is Down syndrome real or an
sophical perspective on what the author feels it illusion?” The author states that while the physical
means to have Down syndrome, readers expecting and genetic stigmata of Down syndrome are reality,
practical and concrete ideas that address learning he believes that it is the “meaning attached to these
styles of children with Down syndrome will be differences that turn them in to ones that matter”
disappointed. Nevertheless, the author presents a such as devaluation, segregation, and diminished
fascinating and provocative essay describing the opportunities at school and in the community. In
historical injustice persons with Down syndrome other words, Down syndrome is actually an illuhave faced in our nation’s schools. Additionally, he sion.
The author believes that since, historically, Down
presents a strong argument for inclusion in both
syndrome is the “symbol of mental retardation,”
school and the community.
The author’s research was based on his observa- students are faced with the dilemma of conformity.
tion of 10 children with Down syndrome ages three The “differences that matter” (motor slowness and
to ten over a two-year period. During this time he speech difficulties) associated with Down syndrome
documented their struggle for citizenship in school. make conformity for these students difficult, if not
In his research, he identifies three ways children with impossible.
Rather, he believes that schools, as extensions
Down syndrome are perceived by their community
of
the
community, can help children with Down
and school: aliens, squatters, or citizens.
The child as “alien” presumes that a person with syndrome move from being a burden to enjoying
Down syndrome is intellectually and developmen- unconditional acceptance when they are welcomed
tally defective, resulting in educational needs that as full citizens in the classroom. He calls for an end
10
Schooling Children with Down syndrome: Toward
an Understanding of Possibility. Christopher Kliewer. Published by Teachers College Press, 1998. ISBN
0-8077-3731-3. $21.95 (pbk).
January/February, 1999
Disability Solutions
Schooling Children
with Down Syndrome
Would You Like to
Write a Review?
Continued
to segregated education and suggests that the
laws in place to ensure inclusion in fact legitimize
segregation! He calls for restructuring schools to
utilize team teaching, creative curricula, and provide
multilevel learning.
The most helpful aspect of the book is the
author’s description of the child as alien, squatter,
and citizen in their school community. For parents
who are asking, “is this inclusion?” when discussing or implementing their child’s placement in the
classroom the author’s descriptions help define the
answer. The anecdotal stories relating his classroom
visits were very interesting and compassionate.
I found this book to be quite difficult to understand at times, requiring sections to be read and
re-read to ascertain the author’s point. His concluding suggestions of team teaching and multilevel
learning are certainly not new ideas, nor are thry
novel to Down syndrome. It is not a book for the
average, busy parent seeking practical information
or techniques to help their child succeed in school.
It is an academic, philosophical discussion of what
it means to have Down syndrome and go to school:
the struggle for belonging while fighting low or
inaccurate expectations. It is a book that requires
time and thought.
This aside, I found myself interested in many
of his ideas, especially the importance of literacy
in both verbal and nonverbal children, and that
acceptance in the general education classroom is
essential for children with Down syndrome to reach
their fullest educational potential. It is evident that
the author, in the course of his research, developed a
sincere fondness for children with Down syndrome,
a strong appreciation of the challenges they face
within the school culture, and a firm resolve that the
time has come to end alienation and banishment
from the community.
Denise Bockwoldt, M.S., R.N., is the mother of three children,
one of whom has Down syndrome. She resides with her family
in Frankfort, Illinois.
11
Occasionally we receive books from different
publishers to review. It is our goal to have books
reviewed by members of our readership who are
parents of a child with Down syndrome or a related disability. If you are interested in reviewing
any of the books listed, or have a book of your own
you would like to tell others about, we would like
to hear from you. Please write, fax, or email your
request to:
Disability Solutions
Reviews
14535 Westlake Drive, Ste A-2
Lake Oswego, OR 97035
[email protected]
Books received (a partial list):

COACH: Choosing Outcomes and Accommodations for Children. Second Edition. Michael
Giangreco, Chigee Cloninger, and Virginia
Salce Iverson. Published by Brookes Publishing,
1998.

Fine Motor Skills in Children with Down Syndrome. Maryanne Bruni. Published by Woodbine House, 1998.

Flying by the Seat of Your Pants: More Absurdities and Realtities of Special Education. Michael
Giangreco and Kevin Ruelle. Published by Peytral Publications, 1999.

Gross Motor Skills in Children with Down Syndrome. Pat Winders. Published by Woodbine
House, 1997.

Inclusion: A Practical Guide for Parents. Lorraine Moore. Published by Peytral Publications,
1996.

Quick-Guides to Inclusoin 1 & 2. Michael
Giangreco. Published by Brookes Publishing,
1997, 1998.

We’ll Paint the Octopus Red. Stephanie StuveBoden and Pam DeVito. Published by Woodbine
House, 1998.
Disability Solutions
Volume 3, Issue 3
Cookbook Review
Cooking Made
Easy
Reviewed by Joan E. Medlen, R.D.
Cooking Made Easy by Eileen Laird. Published by
Cooking Made Easy, 1996. Cooking Made Easy, P.O.
Box 5431, Auburn, CA 95604-5431. www.mindsync.
com/tleonard, $19.95.
I’ve always loved cookbooks. I have quite a collection on the shelf in my kitchen. Yet as I began
to spend time talking with a young woman with
Down syndrome who was learning to cook and live
on her own, I realized few, if any, of my cherished
cookbooks would be of any use to her. She could
read, but the directions were too complicated.
She had little experience in the kitchen, only basic
utensils to work with, and she was nervous about
her adventures. As I asked around, I found it was a
common situation for adults with Down syndrome
and related disabilities. My cookbook collecting has
taken a new turn as I search for tools that I can use
and share with young adults with Down syndrome
and related disabilities who need them. To be honest, I’ve been discouraged.
Recently I found the book, Cooking Made Easy
by Eileen Laird. The book was developed by Laird
while working for people with developmental disabilities in their homes teaching independent living
skills. Like me, she found the cookbooks available
were too difficult. Her clients had trouble with the
abbreviations used, the complexity of the steps,
the unfamiliar terminology, and the assumption of
some basic cooking knowledge. The result is Cooking Made Easy, a collection of 88 recipes that have
been tested for clarity and, I presume, palatability
by two women with developmental disabilities.
Each recipe is formatted to provide more information than simply how to prepare an entrée (see
recipe sample, page 13). Ms. Laird has included a
difficulty rating (1-4), an expense rating ($-$$$$$), a
listing of utensils needed, and an ingredient list for
each recipe. There are also insightful additions such
as beginning each recipe with the initial direction,
“Wash hands,” and ending with “It is done.” Laird also
separates complex measurements. For instance, 1
½ cups flour is listed as 1 cup flour, ½ cup flour. This
makes it easier to remember to use two different
measuring devices. Additionally, the steps listed for
each recipe are simple and usually are limited to one
task, which makes remembering what to do much
easier while learning a new skill.
As a mother of a child with Down syndrome and
additional disabilities, I see this as a great beginning
to broadening resources for adults with developmental disabilities. It will take little work for parents
to modify the recipes and instructions to meet their
child’s cooking abilities and learning style. However,
as a dietitian, I see room for improvement. For instance, the price rating is calculated from estimates
that “assume you already have some basic supplies
in your kitchen (butter, milk, spice rack, flour, sugar,
etc) [sic]. Those items are not included in the price
unless the recipe calls for a lot of them.”Though this
may not appear to be an unreasonable assumption,
no one person’s definition of “basic supplies” is the
same and may lead to an unexpected cost. It is safer
to either price the entire recipe rather than a portion
of it or to define the contents of a pantry.
In the introduction, the author explains “recipes
serve 4-6 people, depending on serving size.” The
author goes on to explain that some have no serving
size listed to give the cook more latitude regarding
the amount to make (e.g., “Hard Boiled Eggs,” “Ants
12
January/February, 1999
Disability Solutions
Continued
Cooking Made Easy
on a Log,” and so on). However, I could find no
recipe that defined the number of servings it
yields or a suggested serving size. Since many
people with disabilities are cooking for one
or two, it is a good idea to make suggestions
regarding how much one serving is. How much
to eat after cooking a recipe is often influenced
by how good it tastes, how we are feeling at the
time, and simply whether there is more!
Along the same lines, the book lacks direction regarding how to store leftovers. Does it
need to be refrigerated? Frozen? How long can
it be kept? This would be a worthy addition to
the end of each recipe or as a separate section
on food safety written with the same style.
If you are concerned about weight management for your child, this is not a great book to
use. The recipes in this book either require attention to serving size and overall menu planning or modification to lower the fat content.
Most of the recipes appear to be higher in fat.
They are, basically, many of the recipes that I
remember from my childhood—the days before low-fat eating. In an email exchange, the
author mentioned her intention to create a
second volume, Low-Fat Cooking Made Easy.
Although there is room for improvement,
Cooking Made Easy is an admirable first step
in a much-needed direction. Yet without an
ISBN, the book will be difficult to locate and
purchase through mainstream book-buying
methods. If this book remotely interests you,
write the information down now. Eileen Laird
has produced a resource that is helpful to
parents and young adults with developmental
disabilities as they learn to be independent
members of any community. If learning to
cook is on the agenda at your house, give it a
try. With some attention to lower fat choices
to accompany these dishes, it’s a good first
cookbook.
Sample Recipe
13
Disability Solutions
Volume 3, Issue 3
Book Review
Uncommon Fathers:
Reflections on Raising a
Child with a Disability
Reviewed by Steve Boutcher
Uncommon Fathers: Reflections on Raising a Child
with a Disability. Donald J. Meyer, ed. Published by
Woodbine House, 1995. www.woodbinehouse.com
800/843-7323. ISBN:0933149689. $14.95.
with special needs, there’s no glossing over the
challenges and frustrations we all feel from time to
time. Through this expression of honesty comes
the shared comfort that we are not alone in our
experience, and by acknowledging our deepest
fears, we can begin to grow to meet the challenge
placed before us.
While there’s no underestimating the importance
of the roles mothers play in raising their children, the
contribution of fathers is also significant. Unfortunately, fathers are often viewed as the “other parent,”
contributing something less than their spouses do.
This book recognizes the important role fathers play,
as well as the unique fears, joys, and aspirations a
father brings to the equation.
Though of primary benefit to fathers, this book
has much to offer to anyone involved with raising
a child with special needs, including family, friends,
medical specialists, the clergy, and educators. The
issues touched upon within this book are broad
indeed, and they go far beyond any one segment of
society. As contributor Nicholas Kappes writes, “The
greatest measure of our humanity is how we accept
and care for those unable to care for themselves.”
Recent years have seen a rapid increase in the
number of books dealing with the joys and challenges of raising a child with special needs. Uncommon Fathers: Reflections on Raising a Child with
a Disability is a welcome addition to this growing
genre. Though previous books have explored this
experience through the eyes of the parent, service
provider, or self-advocate, this book offers new
insight from the father’s perspective.
Uncommon Fathers is a varied collection of 19
essays, written by fathers of children with disabilities
ranging from hydrocephalus to autism; a number
deal specifically with Down syndrome. Though
sharing in a common experience, the fathers do
not speak with a single voice. With backgrounds
as varied as attorneys and the clergy, the fathers
offer their often unique, always heartfelt perspective. Some were still in the process of developing
strategies for dealing with this life-altering experience, while others had fully come to terms with this
“curve in the road.” What the essays do share is a
common desire to attach meaning to their experience. Though much of the essays deal specifically
    
with how the fathers have coped with their child’s
disability, a major portion is also dedicated to the Steve Boutcher is the father of two children, one of whom
insights this experience has lent to their life.
has Down syndrome. He resides with his family in Portland,
I was struck by the honesty expressed by the
authors. Despite the many joys of raising a child
14
January/February, 1999
Disability Solutions
15
The San Francisco Foundation
Community Initiative Funds
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Disability Solutions
A Resource for Families and Others Interested in Down Syndrome and Developmental Disabilities
Editor, Joan Guthrie Medlen, R.D., L.D.
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