A Practical Guide For Parents

Transcription

A PRACTICAL GUIDE FOR PARENTS
OF BABIES WITH DOWN SYNDROME
Because your new baby didn’t come with a manual …
We .created .one
A Practical Guide.indd 1
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A .
Practical Guide For Parents .has .been .w ritten .by .professionals .and .parents .of .children .with .Down .syndrome .for .
Ups .and .Downs, .Calgary .Down .Syndrome .Association, .for .
the .benefi .t .of .new .parents .of .babies .with .Down .syndrome
Special . acknowledgment . and . thanks . are . given . to . Lin . W .
Hermanson, .Project .Co-ordinator, .Dr .Trevor .Janz, .M D , .Medical .
Consultant .and .major .contributor .and .JC .Photography .for .the .
beautiful .photographs .throughout .this .publication
Ups .and .Downs .
Calgary .Down .Syndrome .Association
Phone: .(40) .289-494
Fax: .(40) .289-1015
E-mail: .info@upsdowns org
Web-page: .www upsdowns org
Mailing .Address: .
Ups .and .Downs
Box .61180, .
146 .Kensington .Road .NW, .
Calgary, .AB . T2N .P9
Location:
1940 .6th .Ave .NW
Calgary, .AB . T2N .0W
Published in December 2006 in Calgary, Alberta, Canada. © Ups and Downs, Calgary Down Syndrome Association.
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Table of contents
Introduction
Forward . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Greetings from another parent . . . . . . . . . . . . . . 2
Ups and Downs and the Visiting Parents Program . . . . 4
Practical information
Surviving the first few weeks . . . . . . . . . . . . . . . 5
Telling family and friends . . . . . . . . . . . . . . . . . 5
Telling your other children . . . . . . . . . . . . . . . . 6
Playing with your baby . . . . . . . . . . . . . . . . . . . 6
Feeding: A note for a new mom . . . . . . . . . . . . . . 8
Medical information
What is Down syndrome . . . . . . . . . . . . . . . . . . 9
What causes Down syndrome . . . . . . . . . . . . . . . 9
Common characteristics . . . . . . . . . . . . . . . . . 10
Frequency and maternal age . . . . . . . . . . . . . . . 11
Medical issues . . . . . . . . . . . . . . . . . . . . . . . 11
Growth charts . . . . . . . . . . . . . . . . . . . . . . 12
Developmental issues . . . . . . . . . . . . . . . . . . . 16
Reference library
Suggested reading material . . . . . . . . . . . . . . . . 17
Basic books about Down syndrome . . . . . . . . . . . 17
Biographies . . . . . . . . . . . . . . . . . . . . . . . . 18
Books about coping . . . . . . . . . . . . . . . . . . . . 18
Children’s books . . . . . . . . . . . . . . . . . . . . . . 19
Newsletters and magazines . . . . . . . . . . . . . . . 21
Resources
Clinics and agencies . . . . . . . . . . . . . . . . . . . 22
Articles
Articles . . . . . . . . . . . . . . . . . . . . . . . . . . 25
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Forward
W
e, the executive, volunteers and members of Ups and
Downs, would like to congratulate you on the birth of your
baby and convey our best wishes for a healthy and happy
future. As parents of children with Down syndrome, we are aware
of the mixed feelings you may be experiencing at this time; the joy
of having a new baby plus the sorrow of missing out on the ‘perfect
child’ you were hoping for.
We have produced this guide to answer some of the questions you
might have, to introduce you to books and references that will be
able to address your queries in greater depth, and to acquaint you
with the many resources available to you in Calgary.
We believe the information included in this guide will help you
care for your baby and provide your child the love and stimulation
every baby needs. If you have any questions, please remember that
we are here to help.
This guide has been compiled by medical and nursing staff from the
Foothills Hospital, Alberta Children’s Hospital and Calgary Health
Services, and by parents of children with Down syndrome.
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Greetings from another parent
H
ello, my name is Lin, and I remember how I felt sitting in my
hospital room much like you are now. Only moments after
our second son’s birth we were gently informed that all was
not as we had expected. I remember how our world fell apart.
Brad and I went through all the expected, normal reactions to the news. The fear, the anger and the sense of loss. Where was the perfect baby
we were expecting? I was so scared — scared of how I was going to cope,
scared of how this baby would change my life, and scared of what the
future held for us. I was hurt, confused and afraid of the person Ryan
might become. I wondered why this happened to our baby.
Ryan is not a baby anymore, and sometimes I catch myself watching
him and wondering what all the fuss and commotion was about when
he was born. He is so ordinary in such important ways! The day he
first smiled, our fears vanished.
It took a while to work through all our feelings and apprehensions. We all have to sail this sea of emotional turmoil ourselves, in our own
way, to arrive finally at accepting and coping. I can’t say there was
anything easy about it, except how easily Ryan accepted us!
Early on, we joined an information group for parents of pre-schoolers
with disabilities. This gave us some idea of what was in store for us,
as well as the chance to meet other parents with children of various
ages. When Ryan was about one month old, we became involved with
an infant stimulation program. I feel the program did more for me
than for Ryan! Our therapist came to the house laden with reading
material and information on child development, arriving with loads
of empathy and buckets of moral support. She showed us ways of
stimulating Ryan to encourage his activity. It was good to feel that we
were actually doing something to help him. She was able to deal with
our questions and steer us in the right direction for other services.
We all have to sail this sea of
emotional turmoil ourselves, in
our own way, to arrive finally
at accepting and coping.
Sometimes it was difficult, in the beginning, to remember that
Ryan was just a baby who needed lots of love and cuddles as much
as exercise and other stimulation. My husband and I learned not to
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overload ourselves with information or to
think too far ahead. It is easier to simply
take each day as it comes.
I hope you are lucky enough to make new friends
through contact with other parents and support
people. That’s an extra bonus. Groups like Ups
and Downs, the Down Syndrome Association
here in Calgary, have brought some of us together
and we’ve met some delightful folks who happen
to have a child with Down syndrome too.
Brad and I worked hard to find time for
ourselves and for Ryan’s brother, Tyler. Good
babysitters are worth their weight in gold!
When tired and run down, everything looks
bleaker, and I can’t stress enough how import- As parents of children with Down syndrome,
ant it is to look after yourselves, and to take we have compiled and produced this guide with
time for your other children too!
the hopes of helping you see through this time,
between discovering that your child is not exactly
So I’m saying — take heart. The hardest time the baby your were expecting and the business of
is probably right now. For a new mother, your getting on with life. I wish there was some way I
bottom may be sore, your hormone level could could speed up the process you have begun workbe doing strange things, you likely haven’t had ing through, but we all must do that in our own
much sleep and your mind is spinning. For a time. I send you my best wishes and am confident
father, you might be torn between expressing that you will find strengths and resources you
your turmoil and maintaining a facade of never knew you had!
strength. Whether this is your first baby or
your fourth, you never really know how much Take care of yourselves and don’t be afraid to
of what either of you are feeling is actually a ask for help.
result of the news, or the aftermath of child
birth, or just the general uncertainties about With warm thoughts and best wishes for your
future,
being parents.
Get all the information YOU need. Then take Lin
the time to put things into perspective. None of
us will progress through this exactly the same. You may be miles ahead of me already.
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Need help?
Ups and Downs and the Visiting Parents Program
Ups .and .Downs .provides .a .variety .of .services .to .the .parents .and .
friends .of .people .with .Down .syndrome .in .Calgary .and .Southern .
Alberta .In .addition .to .preparing .this .guide .for .the .parents .of .
newborns .w ith .Down .syndrome, .we .sponsor .workshops .and .seminars, .publish .a .monthly .newsletter .and .host .various .social .events .
throughout .the .year .We .also .encour-age .new .parents .to .meet .and .
draw .reassurance .and .help .from .our .membership
Because .the .parents .in .our .group .have .already .experienced .struggles .
similar .to .those .you .may .be .facing .now, .you .can .fi .nd .an .abundance .of .
practical .advice .waiting .for .you .through .our .group .and .particularly .
from .the .parents .in .our .Visiting .Parents .Program
The .Visiting .Parents .Program .is .comprised .of .trained .volunteers .
who .w illingly .give .their .time .because .they .remember .what .it .is .like .
when .they .were .told .their .baby .had .Down .syndrome .They .will .be .
happy .to .listen .to .your .concerns, .answer .your .questions .and .share .
with .you .what .life .has .been .like .for .them .and .their .families
To .contact .a .volunteer .in .Calgary, .just .call .Ups .and .Downs .at .
403-289-494 .or .have .your .nurse .or .a .friend .call .for .you .Even .if .
you .live .outside .Calgary, .Ups .and .Downs .can .arrange .a .contact .for .
you
For .your .convenience, .we .have .published .information .and .telephone .
numbers .of .other .important .and .helpful .Calgary .and .area .services .
in .the .Resource .section .of .this .guide
4
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Practical information
Surviving the first few weeks
You are the only one right now who knows
exactly what information you are seeking and
what questions you’d like answered. In this
chapter we strive only to address a few of the
more common and immediate concerns that
previous parents have expressed.
Telling family and friends
“How am I going to tell everybody my baby
has Down syndrome?” It may not be an easy
task to ‘break the news’ to family and friends
when you are still in a state of shock yourself. Generally, the longer you put off sharing the
diagnosis, and honestly sharing your concerns
about it, the harder it becomes both for you
and for others. Most parents testify that they
received compassion, love and support from
the people they talked to.
Your first contact will probably be either a telephone call or a visit with the baby’s grandparents — the hardest people to inform because
they are so close and will feel the impact the
most. Try to be straightforward and candid
with them. Consider helping them to accept
this news by giving them the opportunity to
be of some assistance.
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If you find it difficult to relay your news to
other friends and family, a birth announcement might help you. The best response will
come through an announcement that emphasizes the baby over the Down syndrome.
Occasionally, you may be confronted by a
family member or friend who, through ignorance or fear, is distressed, angry or critical. Try not to let their response alarm or upset
you. In time most people will become supportive and curious; they’ll want to know more
about your baby’s condition and how they can
help. For the rest, it’s not your responsibility
to comfort them right now.
Telling your other children
You can help your baby develop motor skills
and interests by providing stimulation and
encouraging your child to play and to learn.
Keeping a sibling or any child who is very
close to your family informed of your
baby’s growth and development will be an
ongoing process. Older children may be
encouraged to become involved in the care
of the baby as this develops confidence and
understanding. A timeless article spoke
of a special bond that occurred between a
girl and her brother with Down syndrome:
“She is crazy about her little brother and
he responds wonderfully to her. It’s easy
to see how much he brightens up whenever
his sister is around.”
How you inform your other children that your
baby has Down syndrome can have an important effect on the way they perceive their new
sibling. Each family will deal with this differently, but for most of us it was important to
address this early and openly. Ideally, you and
your spouse will do this together. Holding your
new baby while talking to your children will There are several excellent children’s books
demonstrate a show of love and acceptance in available that can assist you in explaining
Down syndrome to children, some of which
them as well.
have been listed in the Resource section
Very young children may only need to be told of this guide.
that the new baby will need extra help from the
Playing with your baby
whole family to grow strong and to learn.
Although your new baby has Down syndrome,
Older children will need more information. they are going to grow emotionally, physWithout becoming too technical or detailed in ically and intellectually, just like every
your explanation, try to answer their questions other youngster. But your new baby’s rate
with honesty and simplicity. In the months to of development may be slower. Your baby
come, more questions will likely arise as both may take longer than other babies before
you and your children adjust to your new baby. they can lift their head, roll over, reach or
grasp for objects.
Also try to be sensitive and supportive of your
children’s feelings. Older children will experi- You can help your baby develop motor
ence a range of feelings, which may include skills and interests by providing stimulaconcern for their parents, jealousy, worries tion and encouraging your child to play
that Down syndrome is contagious or that they and to learn.
will have children of their own with Down
syndrome. These feelings are common and You may have done a few of these activities
natural. Open lines of communication will with your older children, but if this is your
first baby, we offer these suggestions:
invite your children to confide in you.
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• Blow lightly on your infant’s naked body, • Bathe your baby in different places such as
and gently tickle and poke her bare skin.
in a baby bath, the kitchen sink, in a shallow
wading pool, or in the tub with you or your
• Move your baby around into different spouse.
positions.
• L ay your naked baby on a scratchy woollen
• L ay your baby on his tummy often. This
blanket or crackling paper to experience
will strengthen upper body muscles as the different sensations.
child pushes himself up and tries lifting
his head. A rolled towel under the baby’s Once your child is older, there are other little
chest will also encourage him to push tricks that you can use to attain the next milehimself up.
stone, and you may learn about these from
other parents, one of the support services or
• Sing and make jolly little baby noises. These perhpas even a book or magazine. We have
pleasing sounds will cause the infant to wrig- listed suggested reading material and support
gle and twist about, exercising body muscles. services in the back of this guide.
• Hang bells near her feet and hands to encourage As helpful as our suggestions are meant to be,
her to kick and grab — more good exercise.
it is most important that you understand that
we are not asking you to replace playtimes with
• Carry your baby around with you in a baby a rigid daily schedule. Time spent with your
sling. Not only is this kind of close contact baby should be first enjoyable and pleasant,
with you enjoyable, but it develops a sense sometimes employing activities such as the
of balance through the stimulation created ones mentioned here, but mostly just cuddling
when you move about.
and loving your new infant.
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Feeding: A note for a new mom
Like most aspects of your baby’s life, there are more similarities than
differences between your baby with Down syndrome and any other
baby when it comes to feeding. Your baby may have a wonderful
appetite and eagerly suck from either the breast or a bottle. Or your
baby may be less enthusiastic, getting sleepy and tiring quickly while
feeding. As both situations are normal, you needn’t get overly anxious
about your baby’s feeding pattern; the key to successful feeding is
patience, perseverance and simply learning a few new skills. Above
all, make yourself comfortable so that you can
relax and enjoy this intimate time of feeding
and cuddling your baby.
By becoming aware of your baby’s preferences,
you can learn to adjust your time schedule and
feeding amounts to obtain the optimum results. Granted, it can become very tiring for you to
spend frequent and long periods of time feeding
your child, especially if you have other youngsters at home, but a schedule that is geared to
your baby’s needs will ensure a healthy and wellnourished child. Mothers who bottle feed, using
either a formula or expressed milk, are able to
measure how much their baby has taken at a
feeding, and this information can be useful.
If you are nursing, you might like to refer to the
booklet called “Breastfeeding a Baby with Down
Syndrome” by La Leche League Canada. This
fourteen-page booklet, available from Ups and Downs, will answer your
questions about feeding schedules, how to keep your baby awake while
feeding, expressing milk, holding the baby and other informative tips.
Please don’t feel alarmed if your baby does not gain weight as quickly
or as steadily as you might expect. The average weight gain charts for
babies with Down syndrome, available on pages 12-15 of this guide,
indicate that as long as your infant is receiving ample nourishment,
this slower weight gain is quite normal.
However, if your baby is having difficulties feeding, or you have concerns
about nursing, many of the nurses on the postpartum units and in the
nurseries are knowledgeable, experienced and available to help you. Such
difficulties and concerns will also be relayed by the Public Health Nurse
who will begin visiting you at your home after you have been discharged
from the hospital. You may also wish to contact the La Leche League,
at 242-0277, or a breast-feeding consultant if you are experiencing
any difficulties.
Like most aspects of your
baby’s life there are more
similarities than differences
between your baby with Down
syndrome and any other baby.
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Medical information
What is Down syndrome
Down syndrome was named after Dr. John Landon Down, who
first described the condition in 1866. Since then, geneticists have
discovered when they cerotype the chromosomes of individuals
with Down syndrome, they find a copy of chromosome 21 present. It is still unclear why this extra chromosome causes the pattern of
physical features and cognitive development which we recognize
as Down syndrome. It should also be noted that Down syndrome
is a naturally-occuring chromosomal arrangement and has been
present in the human condition throughout history.
Your doctor may have noticed some of the physical features, described
in greater detail on the following pages, which alerted them to the
possibility that your baby had Down syndrome. This extra chromosome produces developmental differences as well. Although it’s not
obvious right now, your child’s cognitive development will be slower
than other children. All children with Down syndrome do learn to
walk, dress themselves and talk, but on a different, and likely slower,
timetable.
Let’s take a look at what is known about the causes of your baby’s
differences.
What causes Down syndrome
To understand Down syndrome, you need to know about genes
and chromosomes. Your body is made up of billions of cells, like
heart muscle cells, skin cells, etc. Each cell has, within its nucleus,
a complete set of blueprints used as instructions for making new
cells. These blueprints are actually encoded genes which are strung
together in a chain, called a chromosome.
A person without Down syndrome has 23 matched pairs of chromosomes, for a total of 46 all together. One chromosome of each pair
comes from the father’s sperm, and the other from the mother’s
egg. They work in balance to determine all your physical characteristics, from the sound of your voice to the color of your eyes,
or the size of your feet.
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In individuals with Down syndrome, there is an
additional or third copy of the 21st chromosome
present in every cell of their body. Trisomy 21 is
the name doctors use to describe this ‘triple 21’
condition. In the majority of cases both parents
have the normal number of chromosomes themselves, but the third chromosome in the baby
comes from an extra chromosome in either the
sperm or the egg.
In 1–2% of cases the extra chromosome
comes from re-arranged chromosomes in
one parent. This situation is important
because there is an increased chance of
subsequent children inheriting the abnormality. A geneticist can advise you regarding
this possibility by examining your child’s
chromosomes from a blood sample.
in examining some of the common physical
traits in more detail. The table below provides
both the medical description and a typical
definition of the most fundamental characteristics your baby may have. Keep in mind
that your child may possess many, or only
some, of these features.
Other characteristics that may evolve as your
child grows are fine straight hair and a shorter
stature.
You may take comfort in knowing that
most of the physical features used to
identify Down syndrome are not healthrelated problems. Also, no connection
has been shown between the number of
Down syndrome features a baby has and
that baby’s mental ability. Incidentally,
For reasons still poorly understood, the presence there is no way of determining your baby’s
of this perfectly normal, but extra, chromo- potential mental development this early
some causes an imbalance in the instruction in their life.
normally provided by the usual chromosome
pair. This abnormal blueprint is what caused Over time, you may hear many stereotypyour baby to develop the many subtle differ- ical descriptions about children with Down
ences we recognize as Down syndrome. However, syndrome from well-meaning friends and
because your baby does have half of your genes family. Some children with Down syndrome
and half from your partner, they will also have are very loving and cuddly, or do have a
facial features, hair and eye color that are unique very outgoing, sunny disposition; however,
to your family.
the whole truth is that children who have
Down syndrome are as diversified in appearFinally, it is very important for you to under- ance, character, personality and ability as
stand that parents do not cause Down syndrome. any other child and require the same loving
Your child’s chromosomes were decided at the care, acceptance, security and discipline.
moment of conception. Nothing you did before
or during pregnancy caused your baby to have
Down syndrome. Also, nothing that occurred Common physical characteristics of individuals with Down syndrome
Definition
during childbirth could have caused or prevented Medical description
Low muscle tone; a soft and floppy baby
1. Muscle
hypotonia
Down syndrome. Nor is there any treatment that
2. Hyperflexibility
Joints are looser and more flexible than most
can now change the chromosomal makeup of
Low nasal bridge and small nose
your child. Therefore, we encourage you not 3. Flat face
4. Epicanthic
folds
Small folds of skin over the inside corners of the eyes
to let feelings of guilt or blame rob you of the
emotional energy you may now need for the 5. Oblique palpebral fissures Eyelids that slant upward
6. Brushfield spots
A ring of lighter speckles in the iris or colored part, of the eye
adjustments ahead.
Common characteristics
Now that you know that it was an extra chromosome 21 that was responsible for altering your
baby’s genetic blueprint, you might be interested
7. Dysplastic ear
Smaller, sometimes slightly lower ears
8. Transverse palmar crease
A single crease across the top of the palm. Most people have two curved
creases that do not meet.
9. Dyslastic fifth finger
The middle bone of the fifth finger is smaller. There may be a single crease
instead of two, and the finger may curve inwards.
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Frequency and maternal age
Down syndrome is the most common chromosomal abnormality,
occurring in all races and cultures, and affecting the babies of parents
at all economic and educational levels. About one baby in every 800
born in Canada will have Down syndrome, adding about 15 children
to a city the size of Calgary each year. Although 80% of the babies
with Down syndrome are born to mothers who are under 35 — the
average age of the mothers being 28 — the chance of bearing a child
with Down syndrome increases for women over 35. The table to
the left provides the approximate frequency of a baby with Down
syndrome being born to women of increasing age groups.
Medical issues
There are some medical conditions that all children have a small risk of
contracting but that children with Down syndrome tend to be slightly
more prone to. These conditions are worth watching out for. We know,
from experience, that if we examine the child early for the medical
concerns often associated with Down syndrome, our chances of detecting
and treating them before they become critical are greatly improved.
Maternal Age
Frequency
Maternal Age
Frequency
20 - 24
1:1450 (avg)
39
1:139
25 - 29
1:1347 (avg)
40
1:109
30
1:885
41
1:85
31
1:826
42
1:67
32
1:725
43
1:53
33
1:592
44
1:41
34
1:465
45
1:32
35
1:365
46
1:25
36
37
1:287
1:225
47
48
1:20
1:16
38
1:176
49
1:12
(Approximate occurrences based on Hook & Lindsjo, 1978; Trimble & Baird, 1978)
Your child may encounter one or two of these conditions, or none. But, in
each of these cases, there are advanced treatments available and the majority of children with Down syndrome can grow up healthy and active.
The most serious condition for a newborn would be any kind of heart
problem, present in about 40-50% of babies with Down syndrome. This may take the form of a simple murmur requiring only observation,
or a more critical problem needing immediate treatment and eventual
surgery. An ultrasound of your child’s heart, called an echocardiogram, should be requested by your doctor or pediatric cardiologist to
determine if your baby’s heart is affected.
As your child develops, hearing, vision and thyroid functions should all
be tested routinely by your doctor. To assist you in keeping a concise
medical record of your child, we recommend you consider purchasing
the inclusive, 64-page My Health Record booklet (part one), available
from the Canadian Down Syndrome Society (CDSS) for a nominal
fee. Sections include family history records, information on birth
and the newborn, health care records for infants through to 8 years,
charts for recording tests and immunizations and even a table to note
baby’s developmental milestones.
More important than the Health Record booklet is the Canadian
Preventative Medical Guidelines for Children with Down Syndrome
published by the CDSS. It is a helpful guide for physicians, detailing
the recommended health screening guidelines for all children with
Down syndrome, from b irth to 18 years of age and reviewed regularly
to reflect best practices nationally. This guide can be downloaded from
the CDSS wesbite (www.cdss.ca).
11
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Babies
Physical growth for boys with Down syndrome ages 1-36 months
Percentiles for height and weight of males with Down syndrome, 1 to 36 months of age. From
Cronk C, Crocker AC, Pueschel SM, et al. Growth charts for children with Down syndrome: 1
month to 18 years of age. Pediatrics. 1988;81:102-110.
12
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Physical growth for girls with Down syndrome ages 1-36 months
Percentiles for height and weight of males with Down syndrome, 2 to 18 years of age. From
Cronk C, Crocker AC, Pueschel SM, et al. Growth charts for children with Down syndrome: 1
month to 18 years of age. Pediatrics. 1988;81:102-110.
13
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Toddlers to Teens
Physical growth for boys with Down syndrome ages 2-18 years
Percentiles for height and weight of females with Down syndrome, 1 to 36 months of age.
From Cronk C, Crocker AC, Pueschel SM, et al. Growth charts for children with Down syndrome:
1 month to 18 years of age. Pediatrics. 1988;81:102-110.
14
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Physical growth for girls with Down syndrome ages 2-18 years
Percentiles for height and weight of females with Down syndrome, 2 to 18 years of age. From
Cronk C, Crocker AC, Pueschel SM, et al. Growth charts for children with Down syndrome: 1 month to 18 years of age. Pediatrics. 1988;81:102-110.
15
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Because it is normal for children with Down
syndrome to grow and gain weight at a different
rate than other babies, special growth charts have
been reproduced on pages 12-15 of this guide.
Finally, please remember that even though
Down syndrome is well known and easily recognized in the medical field, your personal physician may have never had a patient with Down
syndrome. That is why organizations, clinics and
hospitals that provide additional support and
resources for children with Down syndrome are
appreciated. The Alberta Children’s Hospital’s
Developmental Services Down Syndrome Clinic
in Calgary has gathered together many of the
health care disciplines necessary for the care
of children with Down syndrome. Geneticists,
pediatricians, speech therapists, physiotherapists,
occupational therapists, social workers, audiologists and others work together as a team to
help you and your doctor ensure your child’s
healthy development. They are a tremendous
resource and have been a great support to many
families. Addresses and information pertaining
to support facilities are available in the Resource
section of this guide.
Developmental issues
the school system with their peers, and now
we are witnessing individuals graduating
from high school with vocational diplomas
and going on to find jobs that suit their
skills. Some individuals have even gone
on to attend classes at the University of
Calgary and Mount Royal College. Also
in recent years, we have learned about a
few adults with Down syndrome who have
obtained driver’s licenses, lived independently, gotten married or excelled in sports,
music or the arts. We have also seen many
others who have gained respect for their
particular accomplishments, talents and
contributions.
Your baby’s development will be uneven and
will affect intellectual function more than
emotional and social abilities. Some forms
of learning, such as speech development and
problem solving are especially difficult and A generation of children who were raised
require stimulation and extra practice. Other with early intervention and higher expectaareas, like emotional expression, imaginative tions has now become teenagers and young
play, personality and family relationships are adults who are breaking all the rules about
what individuals with Down syndrome can
all very much like any other child.
do!
Children with Down syndrome have no trouble
forming strong and loving relationships, often It is these individuals that are taking their
becoming a central part of their family’s rightful place in our communities. They
emotional life. Most families find their child are flourishing in the family environwith Down syndrome has a very pronounced ment, participating in activities with their
personality, with likes and dislikes, personal siblings and peers, volunteering, working
strengths and problem areas, and a unique way and leading full, enriched, and meaningful
of seeing the world.
lives well into their 50’s and 60’s.
More common today, children with Down As the educator Alice Hayden declares “… this
syndrome are successfully integrated into is the generation writing the book.”
16
4/14/07 10:55:26 AM
Reference library
Suggested reading material
Here .is .just .a .sample .of .t he .many .book .t itles, .newsletters .and .magazines .that .are .excellent .for .new .parents .All .of .the .books .should .
be .available .through .your .local .public .library, .the .Ups .and .Downs .
lending .library, .or .the .Early .Intervention .Program .library .These .
titles .have .been .chosen .because .of .their .current, .pertinent .and .
realistic .material .
You .can .obtain .a .complete .list .of .books .and .videos .available .in .the .
Ups .and .Downs .lending .library .by .phoning .our .office at .
403-289-494
Basic books about Down syndrome
A Parent’s Guide to Down Syndrome: Toward a Brighter Future
Paul H. Brooks Publishing Co. 2000
Written .by .a .prominent .doctor .in .the .fi .eld, .who .also .has .a .child .with .
Down .syndrome, .this .book .looks .at .issues .from .birth .to .adulthood .
More .technical .than .some, .it .covers .causes, .genetics, .development, .
education, .recreation .and .future .planning
Babies with Down Syndrome: A New Parents Guide
Karen Stray-Gundersen. Woodbine House Inc. Second Edition 1995
An .excellent, .compassionate .guide .w ritten .by .parents .and .professionals .
Extensive .bibliography
17
4/14/07 10:55:26 AM
Down Syndrome: The Facts
Mark Selikowitz. Oxford University Press. 1997
An insightful book that explores the medical,
social and practical aspects of Down syndrome. Written by a developmental pediatrician from
Sydney, Australia.
Common Sense Discipline: Building Self
Esteem in Young Children
Lois Dewsnap. Telshare Publishing. 1995
This book provides a down-to-earth, storyoriented approach to discipline. Dramatic
stories portray real-life issues and conflicts
often encountered by parents and teachParents Guide to Understanding Down ers of young children. Each scenario is
Syndrome
followed by practical approaches to solving
Cliff Cunningham. Souvenir Press Ltd. 2006
these problems. Contains information on
A very comprehensive introduction to under- the impact that family changes can have
standing Down syndrome. Written by a lead- on children, what challenges teachers can
expect and mistakes adults make when
ing British specialist on Down syndrome.
working with children.
Biographies
A Special Kind of Hero
Chris Burke with JoBeth McDaniel. Doubleday.
2001
Chris Burke, the young star of “Life Goes On,”
tells his story of what life is like with … what
he calls … “Up syndrome.”
Changed by a Child
Barbara Gill. Doubleday. 1998
This beautiful book is a thoughtful
composite of stories from parents who
have faced the many challenges associated with having a child with a disability. The meditations are divided into three
Books about coping
sections: In the Beginning, Rounding the
The Early Intervention Dictionary: A Curves and Transformed, which provide
Multidisciplinary Guide to Terminology
encouragement and support through the
Jeanine G. Coleman, M.Ed. Woodbine House. joyful recognition of shared experience. 2006
This book is a wonderful companion reader
This book defines terms used by many different for parents.
medical, therapeutic and educational professionals who provide early intervention services. Yoga for the Special Child
It is an invaluable training and reference guide Sonia Sumar. Special Yoga Publications.
for professionals such as early intervention 1998.
practitioners, child life specialists, educators, After the birth of her daughter with Down
occupational, physical and speech therapists, syndrome in 1972, Sonia devised a gentle
developmental pediatricians and social workers. and easy-to-follow program based on the
Parents will find it helps them to understand principles of Hatha yoga. The program is
the intervention process and to be knowledge- designed to increase the cognitive and motor
skills of children with Down syndrome, cereable advocates for their children.
bral palsy and learning disabilities. The variChoosing Naia: A Family’s Journey
ous techniques and methods are accompanMitchell Zuckoff
ied by helpful illustrations and photographs
A moving story that chronicles a family’s of the many children that have benefited
struggle from their early pregnancy through from this alternative therapy.
to the birth and life of their daughter who has
Down syndrome and multiple health needs. The author both tells a story and teaches
about Down syndrome in an integrated and
non-judgmental way.
18
4/14/07 10:55:26 AM
All of the books should be available through your local
public library, the Ups and Downs’ lending library
or the Early Intervention Program library.
The Down Syndrome Nutrition
Handbook: A Guide to Promoting
Healthy Lifestyles
Joan E Guthrie Medlen, Rd. L.D. Woodbine
House. 2006.
This much-needed book looks at all aspects
of nutrition and healthy living for children
with Down syndrome, from birth to adulthood. The author, a mother of a child with
Down syndrome and a registered dietician,
encourages parents to start teaching healthy
eating habits early but stresses that it’s never
too late to start. Resources, reading lists and
educational lessons round out this practical,
comprehensive guide.
Parents can also coordinate reading lessons
with teachers, ensuring the continuity of their
child’s education year after year.
Another Season: A Coach’s Story of Raising
an Exceptional Son
Gene Stallings. Brown. 1997
This father — and football coach — shares
his experiences of the past 35 years of family
life with his son John Mark, who has Down
syndrome. It’s a good depiction about all that
has changed for people with disabilities in the
years since John Mark was born.
Life as We Know It: A Father, A Family and
an Exceptional Child
Sleep Better: A Guide to Improving Sleep Michael Berube. Random House 1996
for Children With Special Needs
This thought-provoking book offers snapshots
V. Mark Durand. Brookes Books. 1997
of one family’s experience, while also looking
This book offers professionals and parents at the larger issues of prenatal testing, societal
step-by-step ‘how to’ instructions for address- views of disabilities and how having a child
ing a number of problems and implementing with a disability changed the way this father
widely tested, largely drug-free techniques thinks.
that have already helped hundreds of children
with special needs.
Children’s books
We’ll Paint the Octopus Red
Teaching Reading to Children with Stephanie Stuve-Bodeen. Woodbine House
Down Syndrome: A Guide for Parents Publishers. 1998.
and Teachers
This family favourite helps reassure siblings
Patricia Logan Oelwein, M. Ed. Woodbine House. about their new brother or sister while subtly
1995
encouraging their support and involvement. This step-by-step guide represents a nation- The book concludes with a set of commonly
ally recognized reading program for chil- asked questions with answers for children
dren with Down syndrome that effectively about Down syndrome and how it might affect
meets each child’s unique learning needs their families.
and style. The reading method and lessons
presented here are specifically designed
to be motivating, fun and rewarding. The
program emphasizes that most children
with Down syndrome are visual learners. 19
4/14/07 10:55:27 AM
My Brother, Matthew
Mary Thompson. Woodbine House Publishers.
1992.
‘My Brother, Matthew’ is a realistic, compassionate tale about how family life typically
focuses on the needs of a child with a disability, and the effects that it can have on the
other kids in the family. This book, with
its beautiful watercolour illustrations, will
encourage siblings to share their emotions
and reassure them that their role in the
family is important.
Head Above Water
S. L. Rottman. Peachtree Publishers. 1999.
Skye is a high school student struggling to
keep her head above the water. She’s training
hard to achieve a swimming scholarship and
struggling to keep pace with her grades, her
relationships, and her brother who has Down
syndrome. Her relationship with her brother
is a mixture of irritation, guilt, pride and
love. This is a wonderful story for siblings
that explores how conflicting desires and
responsibilities frame a teenager’s growth
into adulthood.
Avalanche on the Prairie
Grant McKenzie. Diverse City Press Inc.
2000
The story begins with two young outcasts nicknamed Measles, a mischievous boy with Down
syndrome with a knack for computers, and
Owl, a brave new classmate who is scarred by
a cleft lip and hooked nose. Together, the two
boys find friendship and adventure when they
uncover a plot to dump illegal toxic waste in
their town’s landfill. Avalanche on the Prairie
is an exciting, fun adventure that young adults
and siblings will enjoy.
For Pete’s Sake
Ellen Stoll Walsh. Harcourt Brace & Company.
1998
Pete’s a flamingo, he’s sure of that. But why is
he green? Why does he have four feet? And
why doesn’t he have feathers? For Pete’s Sake
is a delightful story that teaches the value of
differences, while entertaining young readers
with wit and charm.
Our Brother has Down Syndrome (An
Introduction for Children)
Shelly, Jasmine and Tara Cairo. Annick Press.
Russ and the Firehouse
1985
Janet Elizabeth Rickert. Woodbine House A delightful children’s story with
Publishers. 2000.
photographs.
Russ is back! In this latest adventure, Russ
gets to spend a day-in-the-life of a fireman Where’s Chimpy?
who is his uncle. His story is shown in full Berniece Rabe. Albert Whitman & Co. 1988
colour photographs that will keep you and The text and photos show Misty, a little girl
your child entertained. This book is suited with Down syndrome, and her father, as they
for children 4-8 years of age.
review her day’s activities in their search for
her stuffed monkey.
Hi, I’m Ben! … and I’ve got a Secret!
Julie A. Boukamp. Band of Angels Press. 1995.
Ben has a special secret and he wants us to
guess what it is. He provides some clues, but
Ben is just like any other kid until we learn
at the end that he has Down syndrome. This
book provides an introduction to Down
syndrome for preschoolers and siblings and
is an excellent addition to home and school
libraries.
20
4/14/07 10:55:27 AM
Newsletters and magazines
Ups and Downs Newsletter
www.upsdowns.org
A monthly newsletter with items and articles of particular interest to
parents and professionals in Calgary and southern Alberta.
CDSS Quarterly
www.cdss.ca
Published by the Canadian Down Syndrome Society, this quarterly newsletter contains articles, medical updates and biographies, and advertises
current events, conferences and seminars.
For information on how to
subscribe to these various
newsletters, please contact
the respective publisher.
Down Syndrome News
www.ndsccenter.org
This newsletter, published by the National Down Syndrome Congress,
is published ten times per year and provides information on medical
and social news, international and global conferences, editorials and
general interests.
Exceptional Parent
www.eparent.com
This professional magazine, with eight issues per year, deals with various
disabilities and all age groups. It may be overwhelming for parents of
infants, yet offers a broad spectrum of information on current issues
such as advocacy, integration, etc.
Exceptional Family
www.exceptionalfamily.ca
Canada’s resource magazine for parents of exceptional children. This
Canadian magazine launched in 2005, focuses on helpful, positive and
practical information for parents of children with disabilities.
21
4/14/07 10:55:28 AM
Clinics and agencies
W
e would like to introduce you to some of the services avail-
able in Calgary. These services are rich in experience, information and advice. Through them you have the opportunity
to meet other parents who have faced experiences similar to yours,
and to discover who is available to help you help your child achieve
his or her maximum potential.
Ups and Downs
(403) 289-4394
Ups and Downs provides a variety of services to parents, friends and
individuals with Down syndrome in Calgary and southern Alberta. We
hold monthly coffee mornings and host a number of family-oriented
social events throughout the year. We also publish a monthly newsletter, hold entertaining fundraisers and actively promote local conferences and seminars.
Calgary Down Syndrome Society
(403) 270-8500
The Canadian Down Syndrome Society provides professionals, parents,
and individuals with Down syndrome with up-to-date information
on studies, conferences and issues concerning Down syndrome. Their
yearly membership fee includes receipt of their very informative quarterly newsletter.
Medical Genetics Clinic, Alberta Children’s Hospital
(403) 955-7211
A referral to the Genetics Clinic will usually be made by your doctor
following delivery, although you can approach them yourself if this has
not been done. The genetics team can provide you with counselling
and information regarding the genetic aspects of Down syndrome.
22
4/14/07 10:55:30 AM
La Leche League
(403) 242-0277
The La Leche League provides information, support and referrals
to women with questions about breast feeding. Women are just a
phone call away from receiving the help they need, and can arrange
for one-on-one consultation. Six Calgary La Leche League groups
meet monthly.
Developmental Services Down Syndrome Clinic (Children’s Hospital)
(403) 955-2372
The Developmental Clinic addresses the developmental needs of children with Down syndrome, ages newborn to 18, by providing the services of pediatricians, speech language pathologists, physiotherapists,
occupational therapists, social workers, orthoptics and audiologists. Referrals may be made through your own pediatrician, your family
physician, or the Genetics Clinic.
Early Intervention, Calgary Health Service
(403) 943-9840
Early Intervention is a home-based program designed to provide
families with developmentally delayed children from birth to 3 1/2
years with assistance in coping with daily needs and routines, learning
activities, physiotherapy and consumer information.
Heart Beats Children’s Society
(403) 289-4329
Heart Beats is a parent education and support group whose aim is to
provide information and support to families who have children born
with congenital heart defects. .
Family Support Services for Children with Disabilities (FSCD)
(403) 297-6022
An Alberta government program, FSCD provides cost-sharing services
for parents of children with disabilities to assist them in obtaining services relating to their children, and the resulting financial and emotional
considerations. Families negotiate annual individual contracts with
FSCD based on their unique needs. There is no ‘means’ test to qualify.
Providence Children’s Centre
(403) 255-5577
Providence Children’s Centre offers a completely integrated full-day
program for children from infancy to five years as well as part-time preschool programs. All programs include full therapy services, trained
staff, and a resident nurse. Providence also provides various educational and support programs for parents.
23
4/14/07 10:55:32 AM
Early Learning, The PREP Program
(403) 282-5011
The Early Learning Program at PREP offers parent-child classes that
assist parents in understanding child development and nurturing their
child’s love of learning. A speech language pathologist, an occupational
therapist and physiotherapist are an integral part of the program. The
Early Learning Program accepts ongoing registration for Learning
Through Play (children 12-18 months) and Language Group (children
1½ - 2½ years). There is no fee for these services.
Developmental Disabilities Resource Centre of Calgary (DDRC)
(403) 240-3111
The DDRC focuses on providing vocational, residential, leisure and family
support programs and services to all persons with mental disabilities, and
is committed to a future of dignity, options and rights. While their services are aimed primarily at adults and older children, their Host Family
Program may be of particular interest to families with young children.
Renfrew Educational Services
(403) 291-5038
Renfrew Educational Services has been offering a broad range of specialized programs
for children since 1973. Fully accredited by
Alberta Education, their programs and services accommodate students from preschool to
grade 6 and are specially designed for children
with special needs.
Children’s Link Society
(403) 230-9158
The Children’s Link Society provides information and support links to families, communities,
agencies and professionals in Western Canada
for both children and adults with special needs. Some of the resources Children’s Link can
provide include funding sources, educational
options, transition planning, application guidelines and appeal processes. As well, they can
help to outline the rights and responsibilities
of professionals and parents in regards to their
special needs child. The G.R.I.T. Program
(403) 215-2444
The G.R.I.T. Program is a privately operated Early Childhood Services
program funded by the Department of Education. The primarily
home-based program is run by an incorporated non-profit society. G.R.I.T. serves children with disabilities between the ages of 2 and
5 in the Calgary area and 100 km from the city limits.
24
4/14/07 10:55:36 AM
Articles
From .the
Bookshelf
By k ay Ferrell
M
about .parents .going .through .
something .called .‘ the .grieving .process’ .when .they .learn .of .
their .child’s .disability .According .to .this .theory, .parents .
fi .rst .go .through .a .stage .of .shock .This .is .followed .by .a .sense .of .
sorrow .or .grief, .where .parents .are .thought .to .mourn .for .the .loss .
of .the .‘perfect’ .child .that .most .parents .hope .for .and .expect .Next .
comes .denial, .where .parents .deny .that .their .child .is .really .disabled, .
or .perhaps .seek .out .other .doctors .to .get .second, .third .and .fourth .
opinions .Anger .and .resentment .follow, .and .then, .fi .nally, .comes .
acceptance .
any ProFessionals talk
Reprinted by permission of the American Foundation for the Blind, New York.
These .stages .— .shock, .grief, .denial, .anger, .and .acceptance .— .are .
often .used .by .the .professionals .who .interact .with .you .and .your .
family .to .describe .your .feelings .and .sometimes .your .actions .The .
grieving .process .is .only .a .theory, .but .is .widely .believed, .perhaps .
because .it .helps .the .professionals .deal .w ith .your .feelings .(It .is .easier .
to .see .similarities .among .people .than .it .is, .sometimes, .to .see .the .
individual) .You .may, .in .fact, .have .all .these .feelings .But .you .also .
have .certain .rights:
25
4/14/07 10:55:36 AM
1. The right to feel angry
3. The right to privacy
Nothing in life prepares anyone for being Many parents have talked about the effects a
disabled, and when it is your child who is child with a disability has on family member’s
disabled, it seems all the more unfair. You privacy because a child with a disability
did not ask for this and there is very little you suddenly brings into the family circle a
can do to change it. Your sense of control over series of professionals who examine, give
your own life and the life of your child is at advice and sometimes even judge the actions
risk. Be angry, but use your anger to get the of individual family members. One parent
said that the hardest part for her was “having
best services you can for your child.
to turn to experts — it was difficult to have
2. The right to seek another opinion
someone tell me what to do with my child.”
Everyone is told today that it makes good sense Some aspects of your life are simply no one
to seek a second opinion before having surgery, else’s business. If you do not want to discuss
or before investing money, or before buying a something, or if you do not want your child’s
used car. It should not be any different for you picture taken, it is your right to say “No.”
and your child with a disability, whether you
are looking for medical care or an educational 4. The right to keep trying
program. If you hear of a new treatment that Parenting is not easy, but all parents try to do
might help your child, why shouldn’t you look the best job they can. It sometimes becomes
into it? Times change, and so do people; 25 years harder when well-meaning friends and profesago, parents of children with Down syndrome (a sionals tell you that you have set goals that
condition that may involve a range of physical your child will never be able to reach, or that
and/or mental problems) were advised to place you must stand back and accept the fact that
your daughter/son has multiple disabilities
their children in institutions. 26
4/14/07 10:55:37 AM
and will never be able to walk. There is nothing wrong with you if you
are not willing to give up. Your child has the greatest potential for
learning now, in the preschool years, and no one knows what event or
combination of events will make a difference for them. If the others
turn out to be right — so what? You will have given your child the best
chance they could have. 5. The right to stop trying
Well-meaning friends and professionals have also told parents that
they do not work often enough or long enough with their child with a
disability. “If you would just do this at home for 15 minutes a day on
the weekends, it would make such a difference.” The truth is that it
could easily make no difference at all. You are the one who lives with
your child; you are the one who is somehow expected to accomplish
at home what trained teachers have not been able to do at school. If
you just cannot do it tonight — okay, that is your decision.
6. The right to set limits
There are limits to what one person can do; you shouldn’t expect yourself
to think about your child all the time. And your child shouldn’t expect
to be the centre of attention. You have limits and your child has limits;
learn to recognize both and give yourself a chance to examine the situation before responding in anger or fatigue. You are not a super parent.
There will be days when
your child thrills you
with joy and days when
parenting will seem like the
most boring job on earth.
7. The right to be a parent
Teachers who work with young children with disabilities and their
families are fond of giving parents activities to do at home. Even
early intervention programs give suggestions for home activities and
talks about parenting as teaching. But you are mommy and daddy first. You cannot expect to be a teacher all the time, and even your child’s
teacher cannot teach all the time. (If you ask your child’s teacher, he
will probably admit that he is great at teaching other people’s kids, but
he can’t do a thing with his own). You and your child need time to fool
around, giggle, tickle, tell stories, laugh, and just do nothing. Those
times are just as much a part of your child’s “education” as the time
you spend following the activities in this or any other book. 8. The right to be unenthusiastic
No one expects you to be ‘turned on’ all the time. Sometimes you
feel sad, or you’re worried about money, or your child or you feel sick. If other people take that as a sign that you’re ‘not adjusting’ or that
you’re ‘not accepting your child’s disability,’ that is their problem. No
one is excited about work every day; it can be tedious one day and new
and interesting the next. The same is true of parenting. There will
be days when your child thrills you with joy and days when parenting
will seem like the most boring job on earth. You have a right to be
‘up’ sometimes and ‘down’ others. 27
4/14/07 10:55:37 AM
9. The right to be annoyed with your
child
There are days when you like your child and
days when you don’t, but that does not mean
that you don’t love them. Children with
disabilities are just as capable of being ornery
as other children, and they should be disciplined. You may feel extremely guilty about
doing it, but your preschooler will greet you
the next morning as though nothing had 12. The right to dignity
ever happened. The rights of parents really boil down to the
right to be respected and treated as an equal. 10. The right to time off
You expect to be neither pitied nor admired, but
You need time to yourself, time with your you do expect to be listened to and supported
spouse or partner and other adult family in a non-judgmental way. You expect to be
members, and just plain time without kids. treated as though your child were not disabled. Many parents describe the first time they And you expect the truth; from the doctors,
went to the grocery store alone, after their teachers, social workers, and therapists who
child was born, as a tremendous feeling of are there to help you; from your friends and
freedom, even though they were doing a neighbours, who owe you a chance to be somechore and even though they didn’t talk to one other than “parents-of-a-child-with-aanyone but the checkout clerk. There are disability”; and from your family members,
many parts to your life, and each deserves as who love you. You deserve to know why the
much attention and nurturing as does your doctor is looking into your child’s ear. If he
disabled child. or she doesn’t volunteer the reason, ask. You
deserve the courtesy of having professionals
11. The right to be the expert in charge
who visit you at your home arrive promptly
You know your child better than anyone else. for appointments. If a teacher is repeatedly
You spend the most time with them, you have late and does not have a satisfactory excuse,
lived them longer than anyone else, and you call the program supervisor and ask why. You
know what works and what doesn’t. Teachers deserve to be talked to as an adult. If you feel
come and go, but you are the expert with the a teacher or a therapist is talking down to you,
experience and first-hand knowledge about tell them so. Sometimes, when you are the
your child. And, as the expert, you have the parent of a child with a disability you have
right to be in charge of your child’s educa- to risk being aggressive and, sometimes, even
tional, social, and medical decisions — at rude, in order to obtain the dignity that is your
least until she/he is able to make them her/ right and your due. himself. Professionals do not live with the
consequences of their decisions so, while None of these twelve rights apply just to
you might want their opinions, remember parents of a child with a disability; all parents
that they are only opinions and not facts. share certain common experiences, whether
They cannot say you’re wrong, that you will they have one child or ten, and whether
regret it, that you’re selfish, or that you’re one child or all ten have disabilities. You
not looking far enough ahead. Nor can they cannot forget that you are an adult with
make you feel guilty or pressure you into a your own needs, desires, hopes and dreams. decision. Parents are the single most import- Enjoy your individuality — and enjoy your
ant resource that children have. child. You expect to neither be pitied nor admired, but
you do expect to be listened to and supported
in a non-judgmental way. You expect to be
treated as through your child were not disabled.
28
4/14/07 10:55:38 AM
Big Boys Don’t Cry
By John Primsky
I
Neil Simon’s play, Brighton Beach Memoirs, Eugene reflects
on his transition to manhood. He says every boy experiences an
event that thrusts him from the safety of childhood to adulthood. On that day he becomes a man. n
I remember “my day” very clearly: my grandmother’s funeral. I stood
at her grave, put my arm around my mother’s shoulder and comforted
her as she cried. Many women cried, but I noticed not one man shed a
tear; they were generally calm, cool and collected. Later my father said
he was very proud of the way I behaved. I did not cry that afternoon
but waited until I was alone that night and cried under my covers. And life went on. However, no event up until then had a more profound
effect on me. I guess that was the day I became a man. From childhood, boys are encouraged to be strong and hide their emotions. To
express them is generally perceived as a sign of weakness.
I’ve realized since my son, Johnny, was born with Down syndrome
over four years ago that there are various degrees of pain. The pain I
refer to is much worse than that which is felt when stubbing a toe on
a bedpost or the pain of a toothache. You know the examples of pain I mean: knowing your child will never
be normal, knowing you can never conceive children, knowing a
loved one is dying of cancer. This pain is especially intense because
you have little control over the events and no way to meaningfully
change the situation. I, for one, enjoy having control over things that
affect me. What concerns me is how men conceal so much of their emotions and
pain behind a facade of strength. What concerns me is how
men conceal so much of their
emotions and pain behind
a facade of strength.
Reprinted from the March 1991 issue of the
Down Syndrome News (National Down
Syndrome Congress) and with permission from
the editors of the Connecticut Down Syndrome
Congress newsletter.
29
4/14/07 10:55:38 AM
When Johnny was born, we thought that everything was fine. It wasn’t until several hours later
when I saw one of the doctors examining him
that I knew something was wrong. The doctor
left the nursery, introduced himself to me and
asked to speak to me privately. We walked to a
supply room behind the nurse’s station where he
informed me they had strong reason to believe
that Johnny had Down syndrome. (By the way,
he was very compassionate and supportive. We
did not have a ‘bad experience.’)
I kept saying to myself, “I have to be
strong and hold it together. Sue needs
me to be stronger than ever. My family
and others will look to me to be strong.”
I felt faint for a second, the first time since being
cross-checked in a college hockey game, and put
my hand against the wall to keep my balance. It
only took me a second to regain my composure. Then, the traditional male virtues took over.
I kept saying to myself, “I have to be strong and
hold it together. Sue needs me to be stronger
than ever. My family and others will look to
me to be strong.”
couples who are the closest of friends. They
confide in each other, let down their defenses
and share their feelings of fear, doubt and
So, right out of a scene from General Hospital, confusion about day-to-day life. The men
I gave the doctor a confident nod, asked him especially talk about their feelings and show
to follow me to my wife’s room and explain the their emotions. But alas, this is television,
situation to her. I opened the door, sat next not the ‘real’ world. to her on the bed and told her the doctor had
something to tell us. Another dose of manhood Many remember Senator Edmund Muskie
took over, and I held her hand and said, “No whose political career was destroyed because
matter what, we will get through this. Nothing he cried on national television. Regardless
of whether or not Mr. Muskie would have
is going to stop us. You can count on me.”
made a good president, it was unfair that
The doctor repeated the same words he spoke his political career was tarnished because he
to me, and Sue began to cry. I held back every expressed his emotions. Why are men often
emotion in my heart because I felt by being looked down upon for expressing sorrow and
strong she would be comforted. Isn’t that the grief? I am pretty sure most men experience
way men are supposed to be? I’ve reflected on these emotions. I know I do. that day for some time now, and the memory
has begun to anger me. Not because it was Sue and I are members of a Parent-to-Parent
the day I found out my son has a disability, Network through which we provide informabut rather because I was denied the right to tion and support to new parents of a child
grieve, to express the pain and sorrow I was with a disability. I cannot recall one incident
feeling. Some say that I should have let it all when the father made the initial contact; it
out; however, I wonder how many other men is always the mother. responded the same way I did.
Often I speak to the mother and ask if the
I get a kick out of the television show ‘thirty- father wants another ‘guy’ to talk about
something.’ The story revolves around several ‘things.’ The answer is usually the same:
30
4/14/07 10:55:38 AM
“He is fine. I’ll let him know you offered, but I don’t think he will
be interested. Thank you.”
My response is usually, “I’m glad to hear he is taking it so well. Let
him know he can contact me at any time if he wants to talk.” What
I am really thinking is, “Fantastic, another knight inducted into
the John Wayne Hall of Fame.”
Johnny’s birth has aroused many emotions in me. On the one hand,
I have learned a lot about compassion and understanding. I can
empathize with the disappointment my friend feels knowing he can
never have children of his own, or another’s regrets in knowing he did
irreparable damage to his marriage by having an affair. I sincerely
feel that men desire a break; to let their emotions flow without the
fear of persecution and embarrassment. As we begin the next decade of the 1990s, my resolution is not to
lose weight but rather to be selfish and treat myself to a good cry or
two every once in awhile. Also, to be more compassionate towards
my male friends when going through periods of crisis. Sue and I have three sons now. What I hope to instill in them is
compassion for others and the permission to express and share their
emotions. Holding it all back does little or no good. I hope I am a
good example to them. Who ever said big boy’s don’t cry.
31
4/14/07 10:55:40 AM
Our
Daughter
First
By K athleen Scott
“
T
here may be a problem.” These foreboding words were used to
describe our new baby daughter, Caroline. “The bridge of her
nose is flat, there is a larger space than expected between her
first and second toes, her eyes have an unusual slant to them.”
“You are telling me she has Down syndrome.” There is nothing
more painful and devastating to parents than hearing such news. As the shock begins to wane, overwhelming fear of the unknown
smothers the joy the long-awaited birth has brought. What did
it mean?
Down syndrome is the presence of an extra chromosome in the
twenty-first pair of chromosomes in each of the millions of cells in
the body. For this reason, it is known medically as Trisomy 21.
Genes and chromosomes play a large part in everyone’s characteristics (traits) and an extra chromosome would, therefore, play a
large part of our daughter’s development. Like all children, much
of her looks, personality, skills, and capabilities would be based
upon her family traits. However, the extra chromosome would
result in some physical features characteristic of children with
Down syndrome. Caroline would experience all the milestones of childhood, but
would progress more slowly both physically and mentally than most
children. The degree varies tremendously from child to child. Used with the permission of the author as published
in the May 25, 1992 issue of the Calgary Herald.
Kathleen Scott is a freelance writer.
32
4/14/07 10:55:40 AM
Caroline would experience all the milestones of
childhood, but would progress more slowly both
physically and mentally than most children.
Telling friends was difficult. Pregnant friends called doctors, concerned. Questions about how it happened (the cause of Down syndrome is
unknown.) Silence from many. Discomfort from more. We had the unexpected outcome from pregnancy everyone dreaded,
yet it was hard to hold our baby and think she would be unwanted. All this fuss for her. Why?
Day 4 and we found out: heart problems. Of children with Down
syndrome, about 40% will have heart problems. We had lived with
Down syndrome for four days and accepted it. A new fear took over:
the fear of losing her. Day 6 and we took her home. Now came real life. Children with Down
syndrome have unique medical challenges. In addition to the daily cares
of a newborn were added looking for signs of problems, doctor visits,
early intervention visits, physiotherapy, check-ups, speech therapy,
and medicines on time. We had decided not to make an issue of Down syndrome. First and
foremost Caroline was our daughter. This was not to trivialize the
effects. It was a part of her we could not change. We in Calgary are fortunate. The First National Conference of the
Canadian Down Syndrome Society was held in Calgary in 1988. The
Fifth National Conference was again held here in May of 1992. Over 500 delegates and speakers converged at the Palliser Hotel to
share information and experiences. Through workshops and seminars
we garnered much about social development from infancy through adulthood; medical updates and research; parenting skills; ethics; education;
and family. But what about those who cannot make it to conferences? With
so many experts, professionals, and specialists, it is hard to retain
control of your life and child. Sorting out the information and
learning which professionals to “trust” is a difficult task. Where
can you get help? Other parents. To find those other parents, I highly recommend local groups like the
one we joined: Ups and Downs, Calgary Down Syndrome Association. 33
4/14/07 10:55:41 AM
Celebrating
Sam’s Birth
By Wendy Lill
I
34 years old when Sam was born. The incidence of Down syndrome
increases with advancing maternal age. Old eggs. (But the father, too, can contribute
to this defect. In about 25% of the cases the
original improper cell division occurs in the
sperm, not the ovum.) It never occurred to
me to have an amniocentesis to determine
chromosomal abnormalities — something
which some doctors (in some large cities)
routinely recommend for women over 35. I assumed that my baby would be “normal”
and that life would unfold as it should. few friends, but the ones we have are incredible.)
We had all of the warm, frightened, bursting,
first feelings one is supposed to have bringing
home a new baby — my first baby. First bath,
first sleep through the night, first soother, first
smile, first recognition … first everything! We
watched him, cuddled him, kissed him, photographed him, loved him, began to build a world
with him.
We brought Sam home. We live in a farmhouse on the St. John River, just outside
Fredericton. (We moved here just a couple of
months before Sam was born so we had very
Sam had two parents and grandparents, and
aunts and uncles and friends who, after their
initial shock, rallied and would now move
mountains for him. was
His condition seemed unreal, far away. Friends from across the country started
arriving. My sister came to visit. Everyone
checked Sam out and immediately became
There are other theories about the causes attached to him. They beheld a baby; cute,
of Down syndrome; ones which I think are cuddly, pink, needy, just a baby after all. They
even more distressing than the “biological turned their attention to Richard and me. They wanted to see the impact all of this was
time-clock.”
having on us. I had the poignant realization
Some scientists believe that viral infections or that the initial fear and dismay that people
hormonal abnormalities may be factors in the had was really for us, their loved ones, not
scrambling of chromosomes. The incidence this new little interloper who’d come along
of Down syndrome may also be linked to the and somehow dropped a bomb in the middle
amount of radiation a woman is exposed to, of our lives. Well, what was the damage done?
and possibly to other environmental causes. What remained intact?
Instead of buying the theory about maternal
age hook, line and sinker, I think we should Well, first and foremost, Sam was a really
be demanding more investigation on links healthy baby; he had none of the physical probbetween radiation, environmental pollutants, lems which are often associated with Down
and all sorts of birth defects, including Down syndrome and which often slow children in
their development. syndrome. 34
4/14/07 10:55:42 AM
Sam had the incredible good luck of being
born into a privileged society where he is (relatively) free from the fear of hunger, war and
deprivation — something millions of babies
born each year will never be assured of. “Celbrating Sam’s Birth” was reprinted from the
CDSS newsletter as taken from the December
1986 issue of Horizons and with the permission
of the author. Wendy Lill now lives in Dartmouth,
Nova Scota, where she continues to write.
new and sometimes harrowing observations with
a bit of humor and wisdom. And some people
have, and still do, take that journey with me.
Diary Entry March 15th: “I took Sam, all wrapped
up in blue comforter and wool hat, out for a walk on
Sam, because of his particular disability, would the river a while ago in his little wooden sleigh. He fell
probably never be a brain surgeon or a micro- asleep after half a mile, but I kept walking. Everything
biologist. When you have a child with a disabil- was very white and almost wavy from the wind, and
ity, some of your expectations are shattered. also huge mysterious cracks deep down into the snow
Some which you didn’t even realize that you and ice. I wonder what makes cracks like that?”
had. (There is room for humor in this kind of
stock taking. Richard, in describing to his aunt My relationship with Sam has deepened over the
in Halifax what Down syndrome meant, said last few months. Obviously because my love has
that it would probably mean Sam wouldn’t be deepened, but something else too. I’m constantly
a Prime Minister of Canada but could possibly and painfully reminded what confused values
be a cabinet minister in New Brunswick.)
people have. As if somehow a flaw, a crack which
can be detected right off the bat in a person is
Richard and I would probably feel the weight somehow more sad or unacceptable than the
of responsibility for Sam long after others thousands of ones we program in from the day
with “normal” offspring are wandering off children are born. I have run into some responses
into their golden age to enjoy peace and regarding Sam’s condition which have made me
quiet in condominiums somewhere. turn ashen inside — the gist of them being that
his life is without any real value because he’s
There was just so much to think about different. And yet, underlying that, is there a
suddenly, and not any of the fluffy stuff framework of what really is valuable? Have these
that you find in the books on bringing home people in any way achieved it, or are they striving
your mewing bundle.
for it? I have no sense of it. It would all be even
more fascinating if it didn’t hurt so much. Sam’s arrival raised all of the really huge questions for me which I am still trying to answer. Life with Sam has not been a tragedy or a nightWhy do we have children in the first place; mare. It’s been the best year of our lives. The
what on earth do we expect from them? In happiest and the hardest. Sam has entered every
what way does this existence reflect on our part of me, every recess of my imagination. He
own? I remember sitting with Sam in the base- affects everything I write, what I notice and what
ment of the church hall with five other moth- I care about. ers, all waiting to have our babies inoculated. Everyone’s eyes were moving uneasily around I’m not sure what the future holds for Sam — or
the room at the other babies, to see whether for any of us. I know what I hope for him, and will
one was standing or doing some other skill work and fight for, and that is what all parents
before theirs. Competitiveness, constantly wish for their children — a life full of happiness,
checking for differences, for the upper hand. and stimulating experiences, and fulfilling work,
Why do we women allow ourselves to get into and wonderful company. I hope people will celethat kind of competitiveness? How will that brate Sam’s birth, and be happy and excited to
spirit of competitiveness affect my sweet little meet him, and enjoy being with him, and give
boy in the future? Will it hurt him? Why are him the best things of all — respect, optimism,
we so afraid of differences? Of weakness? Or acceptance and affection. I don’t think that’s too
shortcomings? I needed people to keep me much to expect. I don’t want to have to settle for
company as I walked through my fears, my anything less. 35
4/14/07 10:55:44 AM
We had to mourn for the child we thought
we’d have before we could rejoice
for the dear child we now had.
Riley,
Our Best Teacher
By Ronalyn Bradshaw
O
ur child has challenging needs. He’s not unique in his condi-
tion. One in 500 children is born with Down syndrome. Sure, it was hard initially, a very big shock, but thankfully,
this stage was short-lived. Thanks to our family, friends and prayers,
we began to have hope. We had to mourn the child we thought we’d have before we could
rejoice for the dear child we now had. We’re now so happy we could
have our own child; a symbol of our love for each other; a part of us
and as great a gift as any child. They told us our son would be mentally disabled. Thank God the term
retarded, a harsh and degrading label, had been discarded. Labels, we
feel, are not important anyway. He is a person first, a child. His biggest
disability is society’s attitude. Nothing has been taken away from him. He was born this way and it’s the only life he’ll know. He is no more or
less special than a typical child. We aren’t special and strong parents. We’re a lot like you. We also have our strengths and weaknesses. We
are not saints that should be placed high on a pedestal. Our big disappointments all came initially, though we are sure to
have more in time, just as you will with your children. No one’s life
is always easy. With children and in life there are always risks, and
no one is handed written guarantees. You just can’t worry your life
away wondering if you or your children will choose the right path and
reach the ripe old age of 85!
Used with permission from the author as
published in the SAMR Dialect, June 1988
issue. Ronalyn Bradshaw is a founding member
and co-ordinator of the parent support group
Up with Downs in Saskatoon.
36
4/14/07 10:55:44 AM
Life is what you make it! Good or bad, happy
or sad. We would all love the road to always
be smooth sailing, but this is reality. Now, you
take the bad with the good. Never say, “I could
never handle … ” something that you’ve never
had to. You just would. Our son has been our best teacher. Riley has
taught us compassion for others and to be
less critical and judgmental. He’s taught us
what true unconditional love is and to appreciate more, even small things. He’s taught
us to accept people for what they are inside
and to see them as individual whole persons. We are certainly less competitive and our
material gains are now much less important. New experiences make us grow, make us
whole. We don’t feel nearly as shallow now. He’s made our lives more complete.
He’s taught us patience, tolerance and true
joy. We could never imagine life without him
now. The good has far outweighed the bad. Do not pity us or feel sorry for him. We now
feel very lucky!
There are worse hardships people must endure. Our son is giving, happy and healthy. We follow
the path given and take what comes just as you
must. We feel our sacrifices have been small so
far and we’ve received so much more in return. We would never change the many good experiences we’ve had because of him. Most people
could benefit from a positive attitude change
like this. No one is perfect and children with Down
syndrome are all very different. Some have
a mild disability and others are more challenging. If given the guidance, opportunities,
stimulation, love and support, they can thrive
to their maximum. He is now very normal to
us and we overlook the ‘defects’ you may see
initially. We look at the good he has to offer
as a whole person. To us he is as perfect as your kids are to you. For
him to know we love him dearly, unconditionally, and forever is all that really matters. 37
4/14/07 10:55:48 AM
Joey Earns Oiler’s Respect by
Giving His All for the Team
By Cam Tait
T
the Edmonton Oiler
dressing room reads 9:15. It’s a
December Sunday morning — nine
hours before a showdown against the provincial rival Calgary Flames. Players are slowly
putting their equipment on for the routine
morning skate, and talk to each other quietly. Coach John Muckler is in the coach’s office
reviewing game videotape. Faint Christmas
music comes over the dressing-room speakers. The only other sound in the room is
water running. he clock in
A young man in a blue shirt stands at the dressing room sink filling water bottles and loading
them on to a cart. After the last bottle is filled,
he turns the tap off, adjusts his glasses, and
pushes the cart outside of the dressing room
to the players’ bench.
In the last eight seasons, Joey Moss has become a part of the Oiler
tradition. Like Gretzky and Kurri. Coffey and Lowe. Messier and
Klima. Stanley Cups and dynasties. The 27-year-old, short, brown-haired man with thick glasses is a
fixture of the Oiler dressing room and does a variety of jobs. Moss
Reprinted from the Edmonton Journal’s December
26, 1990 issue. Cam Tait is an Edmonton Journal
staff writer.
38
4/14/07 10:55:50 AM
had Down syndrome and works on a Grade 4 level. But ask him about
his disability and he’ll tell you, “I’m … not stupid.” His voice sounds
gruff and his techniques may not be graceful, but he is ambitious. Moss was scouted by former Oiler Wayne Gretzky. Gretzky was then
dating singer Vicki Moss and became good friends with her brother
Joe. “Wayne said to me if I do a good job, I’ll get a pay check,” he says,
speaking of Gretzky, who was Moss’ good friend while he wore an
Oiler jersey.
“Joey was working at a bottle depot and the Oilers needed someone in
the dressing room,” Gretzky said during a recent Edmonton visit. “I
asked the Oilers if he could work for them and they said ‘Yes’.”
Joey says, “I fold towels, make coffee, hang up jerseys, fold towels. Oilers are a good team,” he adds. “He’s a big part of this hockey club,” says coach Muckler. “I think it’s
the best thing that has ever happened to Joey. He works hard and has
turned into a real celebrity.”
Ask anyone in the Oiler organization who Moss idolizes and they’ll
tell you it’s assistant trainer Lyle Kulchinsky. Kulchinsky is also the
equipment manager and oversees what Moss does, and gives him some
advice now and then. “Lyle has really the time to teach Joey about his
job and life in general,” says Gretzky. “He’s a big part of this hockey
club. I think it’s the best thing
that has ever happened to
Joey. He works hard and he has
turned into a real celebrity.”
“When he first came here, we didn’t know what he could do,” remembers Kulchinsky. “We started him off folding towels and then went
from there.”
Today, Moss has a variety of duties. When he arrives at the Oiler
dressing room at the Northlands Coliseum about 8:30 am, he goes
right to the coffee maker to get things going. “Whenever I get here in
the morning, the coffee’s on,” smiles Oiler athletic trainer Ken Lowe. “The only time he’s late is Sundays when he has trouble getting on the
bus because of the schedule.”
After the players take to the ice for practice, Moss hangs up small
laundry bags in players’ stalls for their dirty laundry. “We’ll never
know how much he does for us until he’s gone,” says Lowe. “He keeps
the room clean and the towels in order — I have to do that when we’re
on the road.”
But Moss is always an earshot away. “Hey, Joey, the guys need some
gum out there,” says Oiler masseur Stew Pottier. “Tough,” Moss says,
jokingly. He then goes to the back room and gets two packages of gum
and hustles out to the bench. 39
4/14/07 10:55:50 AM
“The guys rib Joey,” says winger Craig Simpson. “But he also gives it
back. We might say something and Joey looks sad, and then we kind
of feel bad. And then we say “Hey, Joe, I didn’t mean that’. Joe smiles,
and says, ‘Sucker’.”
Oiler assistant coach Ron Low is one of Moss’s biggest fans, but also
a joker. “We tease him that if he doesn’t do a good job, we’ll send him
back to the bottle depot,” says Low. Defenseman Jeff Beukeboom gets out of his practice gear and throws
his sweater at Moss — something which all players do. “Hey, Joey. You’re
a goofball,” Beukeboom says. “Hey — no joking on a game day,” Moss
says. “We have a game tonight. No joking. Be serious.” Beukeboom
smiles. “OK, Joe — I’m sorry.”
Captain Mark Messier says Moss creates a light atmosphere in the
dressing room. “He adds a lot of life to the room and keeps the
guys light — and that’s important for an 80-game schedule,” says
Messier.
Kulchinsky says Moss’ speech has improved noticeably since his
employment with the Oilers. “There are 25 guys in here and Joe
has to communicate with them. A lot of people in his situation stay
at home and really don’t talk, but Joe’s speech has improved a lot,”
says Kulchinsky. “And his vocabulary is expanding.” Simpson said
that was the only thing he had to adjust to when he came here from
Pittsburgh. “I couldn’t understand him at first but, if you listen close,
you get so you can understand him,” Simpson says. Says assistant
coach Low, “I understand him. And he gets mad at you if you say
‘Ya, ya’ rather than asking him to repeat himself.”
CFRN play-by-play announcer Rod Phillips tells the story of how
Moss became close friends with Philadelphia Flyer netminder Pelle
Lindbergh, who was killed in a car collision in 1986. “The first
time the Flyers came to Edmonton after Lindbergh died, Joey went
into the Flyer dressing room at the morning skate and spoke to the
entire team, telling him how sorry he was,” Phillips says. “I wasn’t
there but I guess it was very emotional.”
“I’ll never forget the first time
we saw Joe sing the national
anthem in 1981 and both
benches could hear him.”
At 11 am, the dressing room is almost deserted. Moss is putting a load
of laundry in the washer and then empties the garbage. Then he starts
vacuuming, which has become a Joe Moss trademark. “Don’t ever get
in his way when he has that vacuum cleaner — he’ll mow you down,”
says Craig MacTavish. Local sports reporters tell of interviewing
Muckler — and Moss vacuuming between their legs. “Yeah, he used
to do that,” says Muckler. “But we cured him of that.”
Moss stays at the Coliseum all day. Around 1 pm, he eats his bag lunch
and then goes for a steam bath and changes into his game clothes. 40
4/14/07 10:55:50 AM
“Make sure you have a real good shave today,” Kulchinsky says. “I have a lot of respect for Joe for coming as far as he has,” the assistant trainer says. “He doesn’t just hang around the dressing room,” Gretzky says. “He
has a job to do.”
Moss goes up to the Oiler office and gets the mail and brings it to
the dressing room. After he’s dressed, Moss asks Kulchinsky who is
playing that night and hangs up the players’ sweaters in their stalls. Then it’s up to the media lounge for a bite to eat.
During the pre-game warm-up, Moss is sitting on the Oiler bench
beside Kulchinsky. He then goes up to his seat to sing the national
anthems — another Moss signature. “I’ll never forget the first time
we saw Joe sing the national anthem in 1981 and both benches could
hear him,” Gretzky remembers. And he’s a great Oiler fan. “He gets mad if we lose,” says assistant
coach Low. “When we had that nine-game losing streak, he was awful. Grouchy, and mad at the team. He was like a bear.”
After the game, Moss makes his way down to the dressing room. He
gathers the laundry and puts it in the machine. He tidies up the room
and starts vacuuming in and around players, coaches and media.
“He’s a fun guy to have around,” Oiler general manager Glen Sather says,
adding Moss is on the Oiler payroll. “He’s never asked for a raise.”
41
4/14/07 10:55:54 AM
42
4/14/07 10:55:54 AM
43
4/14/07 10:55:55 AM
Calgary Down Syndrome Association
Phone: (403) 289-4394
Fax: (403) 289-1015
E-mail: [email protected]
Web-page: www.upsdowns.org
Mailing Address: Ups and Downs
Box 61180,
Kensington RPO, Calgary, AB T2N 4S6
Location:
1940 6th Ave NW
Calgary, AB T2N 0W3
4/14/07 10:56:05 AM

A Practical Guide For Parents

Transcription

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