1) The document describes the creation and use of "The Mac Book", a portfolio created by Molly Grogan Mattheis for her son Mac who has Down syndrome. The portfolio includes pictures, student work samples, and stories that provide insights into Mac as a person to help teachers and staff better understand him. 2) The Mac Book has proven very useful during IEP meetings and transitions between grade levels and schools to introduce Mac's teachers and aides to his personality and strengths. It helps dispel assumptions and focuses them on Mac as an individual. 3) Updates are made to The Mac Book each year with contributions from Mac's teachers about their experiences working with him. It provides valuable insights for new teachers and

1. September/October, 1996
September/October, 1996 Volume 1, Issue 3
A
resource for
families and
others
interested in
Down syndrome
and related
disabilities.
A
cceptingourson,Mac,
as an individual has
been a priority for our
family since he was born. We
have tried to be sure that Mac
was accepted on his own merit,
rather than by the label “Down
syndrome.” We have also worked
hardathelpingMactobeaccepted
in our community and school. His
educational experiences started in
an inclusive preschool, but as pub-
lic school approached, we worried
about the decisions people might
be making before they knew him
well. We did the usual things to
introduceMactohisteacherseach
year, but felt the process could be
improved.
We learned of a tool that
could really help this process.
Members of our son’s Early Child-
hood Team went to a conference
on inclusion in our school district.
The speech therapist who worked
with Mac came away excited about a
concept presented at the workshops
by Terri Vandercook and Laura Med-
wetz called “A Kid Portfolio.” A “Kid
Portfolio” is a collection of pictures,
writings,andworksamplesthatcreate
a view of all aspects of the child’s life:
family, school, religious, community,
andfriends. Theportfoliocanbeused
toprovidethe“presentlevelof perfor-
mance” descriptions expected in the
IEP, but it also provides much more.
Detailed stories, pictures, history, and
suggestions are included that are not
usually found in an IEP. What actually
goes into a “Kid Portfolio” depends
on the family and the student. A list
of possible categories and ideas is
included in Creating a Life Book, on
page 8. The student, friends, and
family work together to include what
is important. The goal is to provide an
image that highlights the human side
of the student for the staff.
by Molly Grogan Mattheis
The Mac Book:
Highlighting the Person In the I.E.P.
Continued on page 3
In This Issue:
The Mac Book
Letter from the
Editor
Thoughts From
My Teachers
Creating a Life
Book
Looking At Me-
tabolism
Q/A: Transloca-
tion Down syn-
drome
Resources
Reviews
Share Your
Thoughts

2. Disability Solutions
From the moment the first issue of Disability Solutions hit mailboxes I’ve been asked:
“Is it really FREE?” Yes, every issue of Disability Soluitons is “:free.” We do rely on dona-
tions, sponsorships, and grants for funding, so we do neee your help. However, everyone
here at Creating Solutions believes that the best way to create change is by making
informatoin widely available, in the public domain, free of c harge. In that way, no one
is excluded from learning what is important to families and others interested in Down
syndrome and developmental disabilites.
The Mission Statement Disability Solutions is: “To provide in a widely accessible manner,
free of charge, information that is useful, sensitive, and current to everyone concerned
with developmental disabilities: parents, families, self-advocates, and professionals.”
The goal is to bring current research, medical information, educational strategies, and
practical suggestions to our readers in language that is easily understood. Hopefully,
information presented in articles will be “ready-to-use” or require few adaptations to
be useful immediately. No subscription fee or contribution is required to receive this
publication.
If you find the publication useful we hope you will consider making a generous gift
to Creating Solutions so we may continue our work. You can find information regarding
how to make your tax-ddeductible contribution on our website: www.disabilitysolu-
tions.org.
Disability Solutions is a program of Creating Solutions, a project that is sponosred by the
Community Initiative Funds of The San Francisco Foundation, a public charity. The mis-
sion of Creating solutions is: “To do good for, and with, people with disabilities and their
families. to improve the quailty of life and communities.”
Warm Regards,
Joan Medlen
P.S. This Letter from the Editor has been updated to reflect current foundation infor-
mation (July 11, 2006). Donations to support Disability Solutions are tax deductible to
the fullest exted allowed by law. Please make your contribution to: “CIFTSFF for Creating
Solutions” and mail it to: Creating Solutions/Joan Medlen, 14535 Westlake Drive, Suite
A-2, Lake Oswego, OR 97035. Or visit our website to make an online donation.
Welcome to Creating Solutions!
FromtheEditor

3. September/October, 1996
The speech therapist approached several
parents in Mac’s program with information on“Kid
Portfolios.” It was exciting to watch the response of
others to this as Mac moved to Kindergarten that
fall. We had already created a photo album about
our family that we shared at times with new par-
ents of children with Down syndrome. We simply
combined what we already had
with the idea of the portfolio to
create The Mac Book. Working
with Mac’s speech therapist to
create The Mac Book was fun. It
has proven to be worth the time
devoted to its creation.
We first used The Mac Book
during the transition meeting
fromtheEarlyChildhoodProgram
to Kinder-garten. I was imme-
diately impressed by reactions
from the professionals. Most of
the team members at that meet-
ing had already met Mac because
of his involvement at his sisters’
school events. There was one
person who did not know Mac.
She seemed to be more distant
and aloof at the beginning of the
meeting. However, as she began
looking at The Mac Book, her
demeanor changed. She was in-
terestedinmorethantheprocess.
She was interested in Mac. What
better way for professionals to
learn about our son than through
our eyes. The principal felt every
child in her school should have a
book like The Mac Book.
The summer before Mac be-
gan Kindergarten, Mac and I met
withhisteacherstoshareTheMac
BookandvideotapesfromhisEar-
lyChildhoodprogram. Kindergar-
ten was a wonderful experience
for Mac, his classmates, and his
teachers. I believe his portfolio
accelerated that success by providing an image of
who Mac is. He is a boy who loves to play in deep
holes,enjoysfriendships,andhasaloveforreading.
Reading the IEP before school begins creates an im-
age of the academic challenge the student brings
Mac Goes to Kindergarten
There are lots of things
to do in the P.M. Kindergarten.
Here are pictures of Mac engag-
ing in some of the routine activi-
ties. There is work to be done,
and time to have fun!
It’s your special day when
you are the class helper. Mac
puts the date on the calendar
and takes the attendance sheet
to the office.
A page from the Mac Book shows his“present level of peformance”in classroom
routines.
Continued on page 4
Continued from page 1
The Mac Book (continued)

4. Disability Solutions
to the classroom. The Mac Book creates a vision of
the fun and personality he will add.
When we moved to Montana the following
year, I was more concerned that Mac’s new teacher
seeThe Mac Book than I was that he see the IEP. All
three of our children visited their new teachers the
week before school started that fall. The principal
took us around and introduced Meghan to her
6th grade teacher, Malloy
to her 4th grade teacher,
and Mac to his 1st grade
teacher. Mac’s teacher,
Mr. Weber was looking at
The Mac Book when we
arrived. Mac was excited
thatMr.Weberwaslooking
at his book. He eagerly sat
down and told Mr. Weber
all about his buddies at
his old school in Iowa by
pointing at the pictures
and sharing stories about
them. That was the best
introduction Mr. Weber
could have had to Mac. He
heard far more language
than if we had introduced
ourselves without The Mac
Book.
Each year we ask the
people who work with Mac
to add their thoughts to his
book. We created a new
chapter called “Thoughts
From My Teachers.” Staff
who worked with Mac add
their thoughts about work-
ing with him, tips for future
teachers, and lessons they
have learned. This serves
as a communication tool
for the new teachers and
staff who work with Mac. It
also is a joy for us to learn
the impact our son has had
in the lives of others. Previously, Mac’s IEP goals
were centered around academic goals with an un-
derstanding of the social gains he would make by
being included in the regular education class-room
with his friends.We changed the focus in his IEP to
emphasize developing healthy rela-tionships with
his peers and others. To us, that is what inclusion is
all about: belonging, having friends, birthday par-
Continued from page3

5. September/October, 1996
ties, and being part of a team. We hold for Mac
the same dreams we have for our daughters: that
others accept him for who he is and the joy he has
to offer.
As Parent-Patient Representative at the Uni-
versity of Iowa, and now as Family Coordinator
with the University of Montana’s Rural Institute
on Disabilities, I
have shared my
enthusiasmabout
portfolios and the
role they play in
dispelling myths
about children
with disabilities.
The families who
have embraced this tool have seen the value a
portfolio can be for any child at any age. They feel it
makes their child real in a way that is otherwise lost
because of the child’s disability. With their input,
the ideas of what can be included in a portfolio
continues to grow. Families constantly tell me they
start at square one with teachers each year. A book
like the Mac Book builds each year with valuable
tips and short cuts for teachers.
The process of gathering things to add to a
portfolio can bring fun surprises, too. As we gath-
ered samples of Mac’s handwriting for his book,
we made an important discovery. The first sheet
we found, was an exercise where Mac copied sen-
tences that someone else created (Example 1). The
writing was wobbly, unclear, and had few legible
letters. The second sheet, dated one week later,
Example 1: Mac copies sentences created by the teacher.
Example 2: Mac copies sentences that he thought of.
Continued on page 6
was a group of sentences that Mac had thought of
to copy. We could read these sentences! Including
these samples in The Mac Book gives the teacher
clearexamplesofonewaytoadaptlessonsforMac’s
learning style.
The IEP is the legal tool for families, but the
portfolio shares more valuable information about
our son. In fact, we now include a goal in the IEP
that The Mac Book be made available to all school
staff prior to work-
ing with him. One
piece of advice: It
is critical that all
school members
be encouraged to
view the portfolio,
including custodial
staff; bus drivers;
art, music, and PE
teachers; paraprofessionals; and the principal.
For those who pursue creating a portfolio, we sug-
gest:
 Working together with the teachers and other
professionals in your child’s life;
 Have fun, be creative, and emphasize abilities;
 Have your child and his siblings participate; and
 Don’t forget the other children in your family. It
has become as important to our two daughters
to have their own“portfolio”highlighting their
accomplishments over the year.
The more people learn about Mac as we know him,
the easier it becomes for all involved. People are
not as afraid of the label. “Down syndrome”is only
The Mac Book (continued)
Continued from page 4

6. Disability Solutions
Molly Grogan Mattheis is a Family Coordinator with the University
of Montana Rural Institute on Disabilities. She is involved with the
Montana Systems Change Project for Inclusive Education and Tran-
sition. She lives with her husband Phil, and their three children, in
Mac (7), Malloy (10), Meghan (12), and Nana (1) enjoy the back-
yard.
I was Mac’s paraprofessional from the first of the year. What
Mac adds to a classroom is exciting. He is right there working
side-by-side with his peers, whether they are working in pairs or
in groups. Mac has learned a lot by following his classmates’ ex-
amples. I also believe that Mac’s classmates have learned a great
deal from Mac. Mac always has input on class projects and is in-
terested in learning. Mac has a love for books and movies. You will
often find Mac sitting alone or with a partner enjoying a book .
One of Mac’s favorite parts of the day is“sharing time,”espe-
cially when it is his“share day.” He loves an audience. If he had his
way, he would have “share day” everyday. Mac has made friends
inside and outside of his classroom. He is very much a part of his
own classroom and the school as a whole.
MyMacadventurebeginswiththeinevitablesummerrumors.
I was to get a student with special needs in my first grade class.
The following are selections from the chapter “Thoughts From My Teach-
ers” in The Mac Book about his first grade year in Florence, Montana
Pam Martens, Paraprofessional
“Thoughts From My Teachers”
Continued on page 7
    
a piece of who our son is. The only label he should
have to wear is his name: MAC. He wears it with
pride.
Continued from Page 5
The Mac Book

7. September/October, 1996
My first thought was,“Great, I like challenges and I
prefer an eclectic class.” As I began to organize my
classroom, the rumors became more specific. It
was then I first heard the words“Down syndrome”
associated with my new student. My reaction was
more enthusiastic because I never had a student
with Down syndrome before. I remember thinking
that I would learn more from this young boy than I
would ever be able to teach him. My attitude then,
before I’d seen Mac was that he would be a chal-
lenge and a learning opportunity. Every student
should present a challenge and be a source of
learning for a teacher.
Mac’s mother, Molly, set up a meeting with
me a few days before school started. Days before
the meeting, she left a large book of photos and
information ( The Mac Book) about Mac for me to
look through. When Molly and Mac came to the
classroom, Mac enthusiastically pointed to the
pictures in the folder, describing his friends, teach-
ers, and family. I immediately saw the value of The
Mac Book. I was able to assess Mac’s language and
I was able to feel that Mac was a full member of last
year’s class. I also recognized a twinkle in Mac’s eye
during our discussion, which I could tell came from
within. Thisprovedtobeavaluablesignthroughout
the year for me.
Another sign I picked up at the initial meeting,
and later at a meeting with Mac’s parents and the
aide, was that Mac was to be treated as any other
child.This was reinforced in a variety of ways until I
became fully aware of their desire. I realized at the
time that the Mattheis’s were changing attitudes
about children with special needs in the classroom.
Mythinkingcertainlyhadbeenaltered. Ifoundthis
to be a freeing mechanism. Rather than thinking
about what Mac could not do, I realized that he
could do whatever the others were doing. Rather
than thinking about disabilities, I began to think of
abilities.
These initial pre-school meetings were also
freeing for me as a teacher because I knew that I
could now devote much of my time to other issues
and other students. I realized that Mac would not
require the attention I initially thought now that
my mind-set had been reset. I realized from those
beginning conversations that the goal for Mac was
to socialize, to communicate, to play with, and to
work with other children. This allowed me to put
things into perspective throughout the year and
to relax.
Another concern of mine was monitoring and
assisting the paraprofessional assigned to Mac. The
paraprofessional had worked with children with
special needs in the past, and was very qualified.
Initially, she worked closely with Mac. She discov-
ered his strengths, his personality, and his habits.
She then began to ease off and allow Mac to work
more independently. We maintained a continuous
conference throughout the day, exchanging infor-
mation and observations After the first few weeks
of school we had a pretty good idea of who Mr. Mac
was. We knew that he enjoyed sharing before the
class,thathedidn’tcomeinfromrecesswiththerest
of he class, and that he was accepted immediately
byhispeers. Wealsolearned thathehadastubborn
streak, that he loved books, that he loved to hide in
small, tight (and potentially dangerous) places, and
that we completely loved this little boy.
(Thoughts From My Teachers, continued)
My Rambles With Mac

8. Disability Solutions
The purpose of the“Kid Portfolio”or“Life Book”is to create a transition document to accompany the
child from year to year that illustrates life outside the IFSP/IEP. This provides new members to the educa-
tion team insight about the student. It is an opportunity to highlight the aspects of learning and growth
that cannot be measured. It also serves as a guide to the values and activities of the student’s family.
The following are suggested sections and possible topics to include in the portfolio. Families cre-
ate a collection that reflects their values, the student’s personality and desires, and their dreams for the
student. Include pictures of the student doing activities with friends and classmates that relate to cat-
Creating a Life Book:
Hi! My name is Philip
“Mac” Mattheis.
I was born June 9, 1988.
Me and My Family
 Full name, nicknames,
birth date and age.
 Address and a picture
of where the student
lives.
 Picture of the student’s
study area and room.
 Names and pictures
of siblings, their ages,
school they attend.
 Pets.
 Pictures, names, and
information of signifi-
cant others who play
a regular active role in
the student’s life.
Work and Play
 Daily schedule (week-
day and weekend)
 Typical weekend activi-
ties.
 Favorite activities
 Favorite toys and
books.
 Work samples:
drawings, story
telling, stories
written, handwrit-
ing samples, math
concepts.
 What kind of help is
needed to partici-
pate in activities?
 Extra curricular
activities: clubs,
religious activi-
ties, neighborhood
groups, sports.
The Mac Book
       
What Goes Inside?

9. September/October, 1996
Special Things About Me:
 The diagnoses and their
meanings.
 Medications and potential
side effects that may affect
learning, behavior, or energy
level.
 Adapted equipment: posi-
tioning equipment, hearing
aids, glasses, auditory trainer,
braces, desktop adaptations,
utensil adaptations.
 Augmentative Communica-
tion Systems: picture sym-
bols, voice output devices,
sign language. Describe how
they are used at home and in
the classroom.
 Adapted Computer Equip-
ment: special access devices,
programs, specific concerns
for successful use of the com-
puter.
 Special Dietary Consider-
ations: diabetic manage-
ment, tube feeding, texture
concerns, allergies.
 Past or Upcoming surgeries
that may effect performance.
 “What I see:” a description of
any vision impairment and
how to adapt for it in the
classroom
 “What I hear:” a description of
any hearing impairment and
adaptations that help.
 “How I communicate:” a list of
verbal approximations, their
meaning, core signs/pictures
used, how to use AAC systems
effectively throughout the
day.
Things I Am Learning
 Accommodations for learning
style: Successful and unsuc-
cessful curricular adaptations.
 Learning strengths
 Learning needs
 “How I learn best.”
 “Things that motivate me.”
 “Subjects I enjoy the most.”
Emotions
 “Approaches that encourage
participation from me.”
 “Ways to tell by my actions if
I am having a good day or a
bad day.”
 “Things I am sensitive or shy
about.”
My Friends
 “Who are my friends in the
neighborhood?”
 “Who are my friends at
school?”
 Comments from friends
 “What we do together.”
Resources
 Past team members you may
contact.
 Books, literature, sign lan-
guage dictionary, good refer-
ences.
 Clinic information: informa-
tion from specialty clinics that
may be relevant.
 Community Agencies that
may be helpful.
This information has been adapted by families and professionals from information presented at
a workshop provided by Terri VanderCook and Laura Medwetz, at Grant Wood AEA, Iowa City,
IA, March 1994.
Thoughts From My Parents
 Past successes
 “What we would like to have
happen this year.”
 “Things I have done to help.”
 “How I can help this year.”
 “Dreams for my child.”
Thoughts From the Student
(can be dictated or done by student)
 “What I want to accomplish
this year in school work.”
 “What I want to do this year
with my friends.”
 “What my dreams are for
my life.”
Thoughts from My Teachers
 Advice to teachers in the fu-
ture.
 “What I learned from this stu-
dent.”
 “What worked and what
didn’t.”
 “Reflections on the year.”
Thoughts from Therapists
 “What we have done together.”
 “Things we are working on.”
 “What I have learned from this
client.”
 “My dreams for this client.”

10. 10
Disability Solutions
In the first weeks after our son with Down
syndrome was born, my thoughts strayed to his
health throughout his life. My impression was that
all adults with Down syndrome were very obese.
As a dietitian, most of my work had been in the
weight management area. I had seen first-hand the
effects long-term obesity had on a person’s life. I
remember emphatically explaining to my husband
that we needed to be an aerobically active family. I
asked him to consider cross-country skiing instead
of downhill skiing, and to plan for activities like
family biking trips.
Now, seven years later, Andy is a slender, tall
boy, like his brother. He eats well, but not perfectly.
He appears “active,” but it’s not very aerobic. And,
when I look at other children with Down syndrome
at conferences and in my community, there seems
to be a mix of body types: Some are slight and pe-
tite, some are thick and stocky, and some are over-
weight. Where did that early image of obese adults
come from? Had I fallen for a myth? Could it be
that this younger generation of persons with Down
syndrome will not have as many obese adults? Has
the increase in community inclusion changed the
incidence of obesity?
Probablynot. Research suggests children with
Down syndrome are as active as their peers, yet
use fewer calories overall. They appear to have a
lowered Basal Metabolic Rate, which is the rate a
person burns calories for fuel when completely at
rest—or sleeping. This means that children with
Down syndrome use less energy when they are
resting or sleeping.
Taking that information one step further, it
means that they use fewer calories throughout the
day to accomplish the same activities as their“nor-
mal”peers. When Andy hangs out with his friend,
and eats the same amount and kind of foods, does
the same activities with the same intensity for the
same amount of time, he will burn up to 15% fewer
calories than his buddy. Since he ate the same
amount of food as his buddy, but needs less to do
the job, he has calories left over. These extra calo-
ries—even as few as 50 calories a day—can lead to
an increase in weight. For example, 50 calories is
equal to a half of a large Red Delicious Apple. The
calories from half an apple left over at the end of
the day for one year will lead to about 5 pounds
of increased weight. If that continues for 5 years,
it becomes a troublesome 25 pounds. With this
in mind, it is easy to see how slender children and
adolescents with Down syndrome can change into
overweight young adults.
There are three ways to adapt for this difference in
metabolism:
 Increase activity
 Limit calories
 Increase activity and limit calories.
Focusingoncaloriesaloneisoneoption. How-
ever, unless there are other medical reasons, it is
risky to limit calories for children under 18 without
direct medical supervision. Children have great
vitamin, mineral, protein, carbohydrate and energy
needswhiletheyaregrowing. Limitingcaloriesmay
cause children to get too few of what they need to
grow and develop well. For adults, a sole focus on
calories becomes a battle of willpower, and feels
like a punishment.
As with everything else, focusing on positives
and abilities has a far greater effect. Beginning with
afocusonphysicalactivityhasmanymorepositives.
Apersoncanchoosefromavarietyof aerobicactivi-
tiesthatareenjoyable. Additionally,regularaerobic
activityhasmanyhealthbenefits: increasedmuscle
tone,decreasedrestingheartrate,decreasedblood
pressure, a sense of well-being, better sleep, and an
increase in metabolism.
by Joan E. Medlen, R.D.
Looking At Metabolism
The Nutrition Fitness Maze:

11. 11
September/October, 1996
Being physically active, and focusing on aero-
bic activity doesn’t mean you need to be an Olym-
pian. Fortheaverageperson,withorwithoutDown
syndrome,addingsmallamountsofaerobicactivity
on a regular basis makes a difference. Even small
changes in daily activities can be beneficial.
Here are some ideas for adding aerobic activity.
For parents, adults, and children:
 Park farther away from where you are going.
 Take the stairs instead of the elevator. My son
and I are often seen taking the stairs up and
the elevator down—many times.
 Walk or bike to activities that are in your com-
munity.
 When you go to the park, play“tag” for 10
minutes with the kids. Don’t catch them, just
chase them around. Parents think of swinging
and climbing the play structure as being active.
It’s not aerobic activity, except when running
between structures.
For teenagers and adults:
 Use a push mower to mow the lawn.
 Go on a long walk, hike, or bike with a friend
once a week.
 Join a local recreation facility.
 Join a walking club.
 Create some rules: For every one hour of TV
watched, take a walk around the block (Be
prepared to live by the same rules.).
Coming up with ideas to increase activity is the
easy part. The hard part is choosing activities that
are motivating. It is important that the person with
Down syndrome make the choice of activity and be
involved in setting the goals.
Working together as a team in the plans for
activitywillhelp. Sitdownandmakeplanstogether.
Writethemdowninaspecialplace. Createalistof3
small, but specific activities to add in a week. Begin
with things that are 99% achievable. Talk about
when these activities will be done and who they
will be done with, if appropriate. Write them on the
calendar. Then, create a way to keep track visually
Joan E. Medlen, R.D., L.D., is a Registered and Licesned Dietitian ,
and the mother of two boys, one of whom has Down syndrome.
Joan is a NetPro Trainer with the Oregon Department of Education
Child Nutrition Program and editor. She resides with her family in
Portland, Oregon.
  
Jodi and her children, Heidi (8) and Kellen (5), stop to rest.
A brief list of exercise ideas and resources can be found on
page 14.
as those goals are met with a chart or check list.
Remember to leave room for doing more than the
goals you write down—a chance to overachieve!
It is also important to agree on rewards ahead
of time.This is best done when the weekly activities
and goals are chosen. Stay away from choices that
centeraroundfood,andfocusonrewardsthatmake
increasing activity fun. For instance, new shoes, a
new tennis racket, and more opportunities to go
down the escalator. Over time, these activities be-
come a habit that has a direct impact on health.
For Andy, we hope to build habits that will last
a lifetime, and be fun. Habits that will increase his
activity overall, and hopefully, reduce the risk that
he will have to fight the battles that extra weight
can bring. And ours too.

12. 12
Disability Solutions
Q: My daughter has translocation Down
syndrome. What does this mean?
A: All children with Down syndrome inherit
three separate copies of chromosome 21
rather than just two. In most cases, the three copies
of the chromosome are separate. Two come from
one parent and one from the other. These children
have what is called trisomy 21. (“Tri” means three
and“somy”means body.)
Approximately 3 to 4% of children with Down
syndromehavetranslocationDownsyndrome. Like
trisomy21,thesechildrenalsohaveanextracopyof
chromosome 21, however, the extra chromosome
is not separate. Instead, it is attached to another
chromosome.
InmostcasesoftranslocationDownsyndrome,
the extra chromosome 21 is attached to chromo-
some 14. Less frequently, the extra chromosome
21 is attached to chromosomes 13, 15, or 22.
Q:What causes translocation Down
syndrome?
A: Itisnotatalluncommonforchromosomes
to break. For this reason, a repair mecha-
nism exists in each cell to rejoin the broken ends.
Usually,thebrokenchromosomereattachestoitself.
Translocationsoccurwhentwochromosomesbreak
at the same time. If the two chromosomes happen
to be next to one another, it is possible that the
broken ends will attach to the wrong chromosome,
causingarearrangementofthechromosomemate-
rial. Theserearrangedchromosomes arereferred to
as translocated chromosomes (Figure 1).
Translocations can occur during the develop-
mentoftheeggorsperm.Ifatranslocationchromo-
someiscreatedduringthattime,thereareanumber
of possible outcomes depending on the way the
chromosomes separate during meiosis.
Asyouknow,parentsdonotpassonalloftheir
chromosomes to a child. There is a special process,
calledmeiosis, thatoccurswhentheeggandsperm
are formed that results in the separation of each
chromosome pair. During this process, each chro-
mosome finds it’s mate, they intertwine, and the
chromosome pairs line up and down the middle of
the cell. Small fibers form on either side of the cell
and attach to a narrow point on each chromosome,
calledthecentromere. Asthesefiberscontract,each
chromosomepairispulledapart,andtheindividual
chromosomesaredrawntotheoppositesidesofthe
cell. The cell then divides down the middle, creat-
ing the egg or sperm. Unlike other cells in the body,
these cells contain 23 chromosomes each. When
fertilization occurs, the egg and sperm combine to
formanewcellwith46chromosomes. Thisnewcell
goes on to duplicate itself and grow into a baby.
When a translocation involving chromosome
21 occurs, the separation process is more complex.
There are 3 possible ways these chromosomes can
be separated:
What is Translocation
Down Syndrome?by Carol Strom, M.S.
The Genetic Maze

13. 13
September/October, 1996
1. Itispossiblethatthenormalchromosomes14and
21 will be drawn to one side of the cell and the
translocated chromosome will be drawn to the
other side (Figure 2A). One gamete (egg or sperm)
will have the two normal chromosomes. If this cell
is fertilized, the resulting child will have the normal
number of chromosomes (Figure 2C).
Theothergametewillcontainthetranslocated
chromosome(Figure 2A). Ifthisgameteisfertilized,
the resulting child will be a“balanced translocation
carrier” (Figure 2B). The baby will have two copies
of chromosome 14 and two copies of chromosome
21. However, one copy of chromosomes 14 and 21
will be attached, or translocated.
People who carry a balanced translocation
chromosome have the normal amount of chromo-
some material. Therefore, they develop normally
and may never know that they have inherited a
chromosome rearrangement. It is only when they
begin having children that problems may arise.
Their offspring may either be normal, may also be a
balanced carrier, or may have one of the abnormali-
ties described in section 2 and 3.
2. During the separation process, it is also pos-
sible
that the translocated chromosome and the nor-
mal chromosome 21 will be drawn to the same
side of the cell (Figure 3A). If this happens, one of
the resulting gametes will contain two copies of
chromosome 21—one attached to chromosome
14 and one separate. When this cell is fertilized
another copy of chromosome 21 will be added and
the resulting child will have translocation Down
syndrome (Figure 3B).
The other gamete created during this separa-
tion process will have one copy of chromosome 14
and no copies of chromosome 21. If this gamete
is fertilized, a miscarriage will occur because two
Continued on page 14
Figure 3BFigure 3AFigure 3C

14. 14
Disability Solutions
copies of chromosome 21 are necessary for devel-
opment (Figure 3C).
3. The third possible way the chromosomes could
separate would result in the formation of a gam-
ete with an extra chromosome 14 and a gamete
that is missing a chromosome 21. If either of these
gametes were fertilized, a miscarriage would occur
becauselifecannotsurvivewiththesecombinations
of genetic material.
Q: If my child has translocation Down
syndrome, should my husband I be
tested?
A: Yes, if your child has translocation Down
syndrome, both you and your husband
should consider chromosome testing. If neither
of you are found to carry a balanced translocation,
there is only a small chance that you will have a
second child with Down syndrome. If, on the other
hand, one of you carries a balanced chromosome
rearrangement, your risk of having a second child
with Down syndrome would be increased. Further
studies would also be recommended to rule out
the possibility that your parents, siblings, or other
children also carry the translocated chromosome.
Q: DoestranslocationDownsyndromeeffect
development in any specific manner?
A: AsarulechildrenwithtranslocationDown
syndrome will have the same physical
characteristics and health concerns that are seen
in children with trisomy 21. However, you should
visit with your doctor, or the geneticist in your com-
munity to learn more about your child’s particular
chromosome rearrangement.
CarolStrom,M.S.,isageneticcounselorattheUniversityofSouthDa-
kota School of Medicine. She resides in Rapid City, South Dakota.
  
Continued from page 13
Translocation Down syndrome: Should I Be Tested?
Blair, Steven. Living With Exercise
(Dallas, TX: American Health Pub-
lishing Company). 800/736-7323
  
This book is a part of the LEARN
Education Center materials. It
presents ideas and processes to
include activity easily. Concepts
about exercise and changing habits
are presented simply and clearly.
Though this information would re-
quire adaptation for ability, it is a
great tool for working as a team to
become more active. Forms and lists
are provided to help with practical
goal setting and habit changes. It
was written before the Food Pyra-
mid was introduced, so it may be
confusing.
NADS Aerobics. National Associa-
tion for Down Syndrome (Oak Brook,
IL: NADS). PO Box 4542, Oak
Brook, IL 60522-4542. $25.00
  
This 30 minute video tape is meant
to be a fun way to get people with
Down syndrome of all ages up and
moving. It provides a great work
out for friends and family members,
too! It includes a six page booklet
that offers some helpful guidelines
to eating right. This video stars
adults and young adults who have
Down syndrome. Price includes ship-
ping and handling.
Starting Point 1996: The Year-Round
Walking Event Book. The American
Volks-sport Association (Universal
City, TX: The American Volkssport As-
sociation, 1996). 210/659-2112 $5.00
+ $3.00 s/h.
  
A guide to more than 1100 self-guided
walking and biking trails throughout the
USA. Once you get to the start point,
sign the log and take a map and direc-
tions to enjoy a walk as invigorating
or as relaxing as you choose. Most of
the walks are free. You may choose to
make a small donation to the host club.
The American Volkssport Association
has information about local walking
clubs . Many walks have commemora-
tive pins that you may purchase at the
end of the walk. Volksmarching can be
a fun way to enjoy walking with others
in your community.
Exercise Ideas Resources

15. 15
September/October, 1996
The New Language of Toys, Teaching Communi-
cation Skills to Children with Special Needs. Sue
Schwartz,Ph.D.,andJoanE.HellerMiller,Ed.M.Pub-
lishedbyWoodbineHouse1996. ISBN 0-933149-73-
5Woodbine House, 6510 Bells Mill Road, Bethesda,
Maryland 20187. 800/843-7323. $16.95.
W
hen my son with Down Syndrome
attended an early intervention
program, I had the opportunity to
attend with him and learn some wonderful tech-
niques to encourage his language development
from the professionals there. For those parents
who do not have this opportunity, or for those who
wouldliketoreadfurtheronthesubjectofteaching
communication skills through play, I recommend
the book The New Language of Toys.
The New Language of Toys is an updated and
expanded version of an earlier book,The Language
of Toys. It is an easy to read and helpful guide
for parents and teachers of children with special
needs from birth through age six. Early chapters
give information on child development in general,
the development of language, the value of play,
and how parents can combine play and language
development for an enjoyable learning time with
their child.
The center of the book is divided into different
developmentalages. Eachchapter hasadescription
ofthatage,paragraphsonspecifictoysaparentcan
use to play with their child with an accompanying
sample dialogue, a description of homemade toys
valuable for that age group, a list of vocabulary and
concepts the child should be familiar with by the
end of this age group, a list of books children might
be interested in, and a developmental milestones
chart to keep track of a child’s achievements.
The last few chapters focus on teaching lan-
guage with computers, videotapes, television, and
awonderfulchapteronteachinglanguagethrough
daily activities. There is also a large resource guide
at the end of the book. The chapter on computers,
videotapes, and television include ideas for choos-
ing developmentally appropriate software, though
the information provided is limited.
Parents will find the sample dialogues most
helpful in getting a feel for teaching language
through play. These dialogues give a parent the
actual “words to say”to encourage interaction with
a specific toy. Children with speech and language
delays need repetition when learning something
new. There is good information and sample dia-
logue for teaching a single concept to your child.
Forexample,theconcept“up”usingstackingblocks.
The ideas for homemade toys are a particularly
creative and inexpensive way to foster language
development.Ourfavoritewasthe“BattheBalloon”
activityusingpaddlesmadefromcoathangersbent
into squares with knee-high stockings stretched
over them. This encouraged the concept of turn-
taking as the balloon was“batted”back and forth.
Some parents may be discouraged by the ex-
pectations the book sets out for children in the dif-
ferent age groups, especially those parents whose
children are delayed in other areas besides speech
and language. References are made to what a child
“should” be able to do or “will” be able to do at a
specificagethatmaynotberelevant forachildwith
Downsyndromeorothercognitivedelay. However,
if the parent ignores the age groupings and thinks
intermsoftheirownchild‘sdevelopmentthisbook,
is most helpful.
Perhaps the biggest contribution of The New
Language of Toys is its tone—not one of adding to
a family’s busy schedule with another“therapy”ses-
sion, but to offer ideas to add to playtime in order
to increase a child’s language development.
Jodi Reimer is the mother of two children, one of whom has Down
syndrome. She is a mother at home and a professional volunteer.
She resides in Federal Way, Washington.
Reviewed by Jodi Reimer
Reviews
The NEW Language of Toys
  

16. 16
Disability Solutions
Disability SolutionsA Resource for Families and Others Interested in Down Syndrome and Developmental Disabilities
Editor, Joan Guthrie Medlen, R.D., L.D.
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