About This Speech: This speech was written for a Christian
Mothers Of Preschoolers Group. It contains Bible Verses. You have my expressed
permission to print this speech, personalize it, customize it, use the research
and deliver it to any audience.
If you are here because you
have a friend whose child has been diagnosed with Down Syndrome whether as a newborn
or prenatally, Congratulations! You win the True Friend to The End Award! And
if you have any questions please feel free to e-mail me at firstname.lastname@example.org.
you want to return to Diagnosis Down Syndrome just click here.
To Say (Speech) By Sandra Assimotos-McElwee
day my son was born was the day this presentation was first conceived. Sean was
born with Down Syndrome almost 4 years ago. Being faithful people my husband and
I didnít ask "Why Us?í as many do, we simply needed information on Down Syndrome
and how we could help our son.
My husband phoned the birth information to
the woman who was preparing the custom birth announcements, "9 pounds 3 ounces,
21.5 inches long, etc." My thoughts were that our friends and relatives really
needed more information about our son than his vital statistics.
four friends of his diagnosis over the phone and in person I really didnít like
their reactions. They were getting upset and apologizing. Their "Iím sorryís
were compelling me to comfort them and tell them "Itís O.K." and I didnít
have the emotional energy at the time to continue to deal with their sadness,
when I had a new baby that I loved anyway, no matter what he had and I was worried
about because he was in intensive care at the time.
Then I thought, "well
if this had happened to one of my friends what would I have said?" I couldnít
retrieve from my memory files anyplace I had heard the proper response, or even
the improper response. So I decided to add a note to my sonís birth announcement
telling people how we wanted them to respond. It read:
Dear Family and Friends,
Sean is a very special baby,
and the birth announcement canít possibly say it all. God has made Sean special
and chosen us to be his parents...we feel blessed. Sean was born with Down Syndrome.
We want to give you time to adjust to the news, so you wouldnít feel the need
to have an immediate response. We hope you will feel the same as we do, weíre
happy and proud. We would like you to see him as we do, a beautiful baby boy.
We also want you to treat him just like any other baby---Congratulate US. We have
a baby, weíre a family now. This is not a sad moment, PLEASE do not apologize,
we arenít sorry. We are still gathering information on Down Syndrome and probably
wonít be able to answer any questions for a while. We would like to encourage
you to call us, come to see Sean. He sleeps, eats, cries and dirties diapers,
just like every other baby, heís just got an extra chromosome.
Almost everyone responded the way we asked, a few ignored it and apologized
anyway. The bottom line is people donít know what to say. Consequently, they resort
to clicheís and sorrow.
So since our Momís never told us "What to Sayí
in this area Iím here to report to you what parents who have a child with a diagnosis
of any kind want to hear and what they donít want to hear. After collecting the
"Things to Say and Things to Not say" from the over 100 parents who
responded I realized how much this presentation was needed. I ended up with 7
pages of "What to Say" and 10 pages of "What NOT To
I did my research through Internet newsgroups. These are diagnosis-specific
on-line support groups where parents can ask advice of hundreds of other parents
who have already experienced a particular problem they may be having and get a
lot of advice. They also report progress they are having with their children in
the form of "Brags" and get a lot of kudos from people who genuinely
are happy and excited for their child to progress.
I simply asked for input
on what parents liked to hear when people were commenting on their child and what
they didnít like to hear. The newsgroups I contacted were Down Syndrome, Autism,
Deaf, Attention Deficit Disorder, Cerebral Palsy, Spina Bifida, and Apraxia which
is a speech disorder.
Right now you may be thinking, "This wonít happen
to anyone I know." Well, according to the March of Dimes out of every 100
babies born about 3 of them are born with anomalies that will affect their health
and development. Not every disability is diagnosed at birth, many arenít diagnosed
until the child is older. These numbers have remained the same since the United
States began keeping detailed statistics in the 1960ís. The one statistic that
has changed is that 50% of the babies born with birth defects no longer die, thanks
to improved medical care.
First you must understand what the family goes
through when a child is born with a diagnosis. My husband and I are not the norm.
Most people go through the entire grief process as they would if a death had occurred.
Really in their eyes a death has occurred. The death of the dream baby they fantasized
about for 9 months or more. One Mother wrote: After the long heartbreak of infertility
and miscarriages, finding out my miracle baby had Down Syndrome was crushing.
Everyone kept assuring me that the baby would be a "happy" child They
didnít understand that I didnít care about how my child would handle Down Syndrome,
but that I was feeling sorry for myself. I was sorry about what it would do to
my life, my dream for a healthy baby, my future. My baby had ceased to be a baby
and just became a diagnosis. Reading stories about other parents and seeing how
much they loved their babies brought me back to the baby inside me. It took my
thoughts off "poor me" and back to the cute and cuddly baby I was carrying.
Reading about the day to day life that parents on the Internet newsgroup had with
their kids helped me refocus on the fact that I had a baby...just a baby...just
Godís most glorious miracle.
People go through the grief process at different
speeds. Some never make it all the way through. Many will revisit the process
over and over again throughout the childís life as limitations unfold themselves.
The process consists of (in no particular order) Denial, Anger, Bargaining, depression,
then hopefully acceptance. Each stage can last any amount of time. It may be difficult
to wait out each stage your friend goes through, as you will not really be able
to relate to her feelings. Ephesians 4:2 says, "Be humble and gentle. Be
patient with each other, making allowance for each otherís faults because of your
love." Wait for your friend to change and grow.
Where you come in is
to provide your friend with support. Are you a true friend to the end? This is
In Mark 12:28-31 "He asked him" (meaning Jesus) "Of
all the commandments which one is the most important? ĎThe most important one,í
answered Jesus, ĎIs this...Love the Lord your God with all your heart and with
all your soul and with all your mind and with all your strength. The second is
this: ĎLove your neighbor as yourself."
Sadly many old friends will
avoid contact with the family because they donít know what to say. Donít be a
coward. Donít hide in fear of the unknown. Your friend needs you now, more than
ever if to do nothing else than to listen. As this verse says the second most
important commandment is to love your neighbor. If you avoid your friend you will
truly be missing out on getting to know an exceptional person---her child. Once
again in Galations 6:2 This is stressed: "Share each otherís troubles and
problems and so obey our Lordís command."
I could do several presentations
on the various disabilities. One thing to always avoid is the stereotypical "They
all..." types of statements. Every person within in any disability is an
individual. Here are the top 5 most hated things that parent of children with
Any disability hate to hear:
1. "Iím Sorry." "What a Shame."
"How sad." "Poor thing. "Or any statement that conveys pity.
Statements like, "It could be worse." No matter what the diagnosis at
the time nothing could be worse to the parent. "At least your other child
is normal" Wow, thatís real comforting. "They all look the same of course."
"Heíll never be able to drive a car." "How severely is he affected.?"
Any statement that puts blame on the parents. This is particularly true of parents
whose children have been diagnosed with Autism or Attention Deficit Disorder and
children with speech delays. Donít say, "Itís a result of family problems."
"I heard it runs in families, so I guess you are responsible for your childís
problems." Maybe if you were a better parent you wouldnít have this problem."
" "You didnít talk to him enough." "What did you do wrong?"
all these things were said to the parents who wrote me. Sad but true. Proverbs
18:21 says, "Words kill, words give life; theyíre either poison or fruit
- you chose." And again in Proverbs 15:4 "Kind words bring life, but
cruel words crush your spirit." I John 4:8 "If a person isnít loving
and kind, it shows that he doesnít know God, for God is love."
Donít try to explain why God the Awesome Creator of the universe allowed this
to happen. God has a purpose for every life. The purpose will be revealed in His
time. The answer also isnít the same for every parent. Trying to give some Ďpatí
answer is putting God in a tiny little box just to make us feel better. Statements
like "God gives special children special parents." Are old and tired.
I have personally heard this one so many times I want to scream. Here are some
opinions form Parents about this topic. One Mother wrote, "God only gives
special children to special people? Absolutely. The question is whether or not
the parent chooses to accept the mantle of their specialty and rise to the challenge
presented by special children." Or the three year old who overheard his aunt
telling his Mother, that his new brother ĎWas a Gift from Godí because of his
disability. He said. "In Sunday school they told us we were all gifts from
God." Out of the mouths of Babes. Yes, ALL children are gifts from God. Psalm
127:3 says, "children are a gift from the Lord." This passage doesnít
mean some children it means all children. Another Mother wrote, "God didnít
choose me to parent a child with Down Syndrome. But God did create a world where
these things happen...sometimes to nice people...sometimes to not so nice people.
Sometimes to strong people, sometimes to weak people. What is important is what
we do with what life hands us. The point is the process. Rather than being pre-ordained,
life is more like an improvisation. I chose to make it a dance."
Sainthood. Donít tell parents "I couldnít do it." I couldnít handle
it." "Your a saint." These statements imply that disabled people
are so awful that only a Saint would love and care for them. One Mother says she
always wants to reply, "We have to handle what weíre dealt, and maybe it
isnít so easy for me to handle either."
6. I know I said there were
5 things that parents of children of ALL disabilities hate to hear. But there
is one that is specific to Down Syndrome that I have to throw in. I can honestly
say that not one day goes by that someone feels compelled to tell me, "Theyíre
such happy and loving children." Well, arenít all children? One parent wrote,
"What about when theyíre no longer children? Oh great Iíll have a 35 year
old child." Another said, "Yes he smiles, he also has temper tantrums.
He gets happy AND sad. He doesnít just live in his own little world."
thing that was the consensus is that nobody means harm by any statement. All things
said were with good intentions. Everyone understand that no one has ever been
told "What to Say"...Until today.
So your friend calls you and
tells you her newborn baby has "something wrong" with him/her. What
Do you say?
First of all, "Congratulations". Yes, Congratulations.
They are new parents after all. They did go through 9 months of pregnancy, and
labor and delivery. They do deserve to be Congratulated. The responses from parents
who gave birth to children with a diagnosis told me the things they liked to hear:
1. Really in most cases, actions spoke louder than
words. Friends and relatives that actually did something made more of an impact
than any words they could have said. Galations 6:9 "And let us not get tired
of doing what is right, for after a while we will reap a harvest of blessing if
we donít get discouraged and give up." Meals, baby-sitting, friends who actually
took the time to learn about the disability by reading a book. Offering to look
up information on the Internet if they donít have access. I John 3:18 "Let
us stop just saying we love people, let us really love them, and show it by our
actions." And a real biggie, their friendís ear. "You and your husband
need some time to yourselves, can I baby-sit?" Say concrete things not Ďlet
me know if you need anythingí. Be available, it is not the new parentís job to
pursue you. Proverbs 3:27 "Whenever you are able, do good to people who need
2. Compliment the child and the parents. "Sheís a wonderful
baby and lucky to have parents who love her." Or, "Tell me about ___(Use
the childís name)" "You will make a difference in his life." "Iím
sure this present many challenges, but I know you will figure out how to meet
them." "Can I hold her?" "I donít have any words of wisdom
for you, but neither would you want them. Your new son will face many challenges
in life, but he has the best possible start with you and your husband. What he
needs most is something you have lots of love." "Well, what you have
here is another excellent opportunity to meet a challenge for which you are well
suited. Remember that no matter what they tell you trust your own instincts and
sheíll do just fine." The Biblical basis for this is in I Thessalonians 5:11
"Therefore encourage one another and build up one another, just as you are
3. As parents of any child we love it when people notice
similarities between the parents and the childís facial features. "HE looks
just like his Dad." "She looks just like you did at her age." "What
a doll." "Sheís got your nose." "What a beautiful boy, you
must be so proud." One verse Iím sure you all have heard is Luke 6:31 "Treat
others the way you want them to treat you."
4. Your acceptance of the
baby is very important to the new parents. Knowing___(use the childís name) has
changed our lives forever." "He will teach us more than we will ever
teach him." We love___(use the childís name) with all our hearts." "You
are so lucky to have___(childís name) he just brightens my day when I see him."
"I feel lucky and honored to know her."
5. Do acknowledge the
grief that parents are feeling. I donít mean to minimize that with all these positive
statements. Some things to say would be, "I know I canít take the hurt away
but I wish I could." "It will be O.K. There will be hard times, tears,
and lots of fears, but the love and joy will be so intense you will not be able
to imagine your life without this little girl!" Although I can sympathize
with what your family is going through, I donít understand, but you have my support.
Tell me about ___(fill in diagnosis) so I can learn about it." Luke 6:36
"Try to show as much compassion as your Father does."
If you meet
someone later who has a child with a diagnosis you donít really need to comment
on the childís disability. Talk to the child, interact with him/her and encourage
your children to play with him. This means so much more than canned phrases that
are well-meaning, but trust me, are old and weak. If you feel compelled to comment
to the parent about their childís disability remember these passages, James 3:5
"A word out of your mouth may seem of no account, but it can accomplish nearly
anything or destroy it." And Psalm 141:3 "Lord, help me control my tongue;
help me be careful about what I say." Here are the favorite things that parents
like to hear:
1. Any story of something positive you observed their child
doing while the parent wasnít there, like at school or Church. Compliments like,
"Youíre a great advocate for your child." "Heís growing and doing
so great, I think that is so wonderful." If the child is deaf ask, "How
do I sign to her?" "Heís improved with his speech, Iím hearing him say
words more clearly."
2. If you encounter someone in a store whose child
is acting out, donít immediately assume it is bad parenting. Many times a 10 year
old has the emotional maturity of a 3 year old and has no outward signs that he
has a diagnosis. If it is a grocery store, offer to help with the bags while the
parent deals with the child. I Corinthians 13:4 "Love is kind." Just
because you donít know the person doesnít mean they arenít still your neighbor.
One act of kindness can change someoneís outlook.
Yvonne Samuel wrote an
article titled, "On Disabilities, Always think before You Speak." The
title says it all. If you know nothing about the childís diagnosis then ask a
mutual friend who who may have more information. Get a book from the library.
Do an Internet search. Be sure though that anything you read is less than 5 years
old. Research is moving so fast that much that is very old is outdated. All parents
really love to talk about their kids. Ask the Mom, but be sensitive. The proper
way to ask would be, "Does your child have a diagnosis?" Many times
there are definite developmental problems that have not been attributed to any
one thing and they may not have a Ďlabelí for their child.
A favorite quote
of mine is from Cathy Letteís book entitled, "Mad Cows", it goes, "A
closed mouth gathers no feet." Or the Proverb 21:23 "Watch your mouth
and hold your tongue; youíll save yourself a lot of grief."
scenario; Your friend has a child that is either acting differently or his/her
speech or any other areas are developing slowly. She says to you, "Iím concerned
that my childís speech is delayed", or "Johnny acts different than you
son, I wonder if something is wrong." Please donít avoid this conversation
and take the easy way out by saying something like, "All kids develop at
different rates," or "Heíll outgrow it." You will probably be uncomfortable
that she may be right. Then say what many Momís of children who were delayed want
Help them to help themselves. Many times the parent has no idea
where to turn. Say, "A professional evaluation can be great for your peace
of mind." Go with your Gut if you think something is wrong." "Have
you talked to anyone else about it, like a teacher or a Dr.?" Proverbs 25:11
"Timely advice is as lovely as golden apples in a silver basket."
earlier the child receives help, the better the chance is he/she will catch up
to his peers, depending on the diagnosis. We do not fail our children if we fail
to find the answers. We only fail them if we fail to try.
The local agencies
that do evaluations in this area are listed in your handout along with a basic
checklist of Ďnormalí development from birth to 3 years old. For Children over
the age of 3 the local school district would perform an evaluation. Parent to
Parent is the local support group that can connect a parent to another parent
whose child has a similar diagnosis and has been down the road already. They can
provide a lot of support to the new parent in the form of advising about Doctorís
and therapies to look into.
All parents who responded to my request that
had children with later diagnosis said they were finally relieved to know what
was wrong with their child. They then had a place to work from and specific things
they could do to help their child. They had felt like they were crazy because
everyone kept minimizing their concerns.
All of the things "To Say
" I have listed are in your hand-out packet. There are some more diagnosis
specific "Things To Say". I also have "things to ĎSay" to
parents who have suffered a miscarriage or the death of a child. There are several
poems and articles for you to share with new parents.
And now I have to
get up on my soapbox. Your friend who is pregnant calls you in tears. The Dr.
just told her that her unborn baby will have Down Syndrome, Spina Bifida or any
other birth defect that can be prenatally detected. As awful as you may think
this is remember every life has a purpose. This is proven in Psalm 139:13-16 "You
made all the delicate inner parts of my body, and knit them together in my motherís
womb. Itís amazing to think about. Your workmanship is marvelous and how well
I know it. You were there while I was being formed in utter seclusion. You saw
me before I was born and scheduled each day of my life before I began to breathe.
Every day was recorded in your book." She has been given 1 week to decide
whether to have the baby or terminate the pregnancy...What do you say? 1. First
tell her, "Do not ask people for their opinions who are not in your situation.
If the people you ask donít have a child with the particular disability then they
know not what they say. Call Parent to Parent they will connect you to a parent
with a child who has this same diagnosis. Better yet, get on the Internet and
find the Newsgroup for this and ask hundreds of families what itís like."
believe all people are meant to grow spiritually and intellectually. I can assure
you that you will grow as a person. You will learn things about people that you
never thought you would. Whatever you do, you make the decision, donít allow the
Dr. or your family, or anyone else to make the decision about this baby."
In Mark 9:36-37 "Then he placed a little child in his arms he said to them,
(Jesus)"Anyone who welcomes a little child like this in my name is welcoming
me, and anyone who welcomes me is welcoming my Father who sent me."
you feel you are not up to parenting this child, there are hundreds of people
on waiting lists wanting to adopt him/her." "Every life is a blessing."
" I canít imagine what you are going through now, I do know that children
with Down Syndrome arenít really much different that any other child. Every life
has a purpose." "Life presents us with challenges. We can look at them
as obstacles to be gone around or blessings to be found. They can either drag
us down or lift us higher than we ever imagined."
To me it isnít fair
the option of an abortion even exists. How can you make a rational decision in
one weekís time at the most emotional hormonal time in a womanís life. In Ecclesiastes
3:18 explains why such choices are available, "God is letting the world go
on itís sinful way so he can test mankind and men will see that they are no better
I received this from a 41 year old man who was born with
Spina Bifida, "When I was born, the Dr.ís told my parents I would never walk.
I now regularly hike in the Great Smoky Mountains National Park. No Dr. can know
the potential of a child, no matter what the odds against them. Especially if
they are aborted. In the case of Down Syndrome, the chromosomal diagnosis has
little to do with the prognosis. Like the population at large, kids with Down
Syndrome have a wide range of IQ possibilities and there is no knowing what their
potential is until they reach for it. Tell people that your childís limitations
will become apparent just as will the limitations of his peers. If you look on
the bright side, people will join you. The ones who say the stupidest things are
the stupidest people. Theyíre the ones with the disability! If you canít educate
them, disregard them. Donít waste emotional energy on fools."
new person I meet asks me if I knew Sean would have Down Syndrome before he was
born. The answer is No, but he would still be here either way.
told me, "We put our baby in temporary foster care for the first month of
his life. We were devastated and needed to read up on Down Syndrome and find out
about it. We didnít want to become too attached to the baby in case we decided
to give him up for adoption. Our 7 year old made the decision for us when he asked
his father, "Dad, If I break will you send me away? Iíll help with the baby
if heís broken." Out of the mouths of babes. The truth in this statement
is you canít predict the future for any of our children. And I think you would
all agree that if your child were hit by a car tomorrow and rendered handicapped,
you would still love him or her, and do everything in your power to help him or
One mother told me the favorite thing she was told as she received
her prenatal diagnosis, "The ultra-sound technologist said that I may be
sad now, and I was, but so many doors will be open to me and my life will be changed
forever. I did not understand and looked at her through my tears and wondered
what she was talking about. I know now, it was the joy and happiness my baby has
given me. Down Syndrome or not. It was the opening up of strangers to tell me
about their loved ones and their feelings of joy, sorrow, happiness and all the
things that come with loving a child, but with a Ďsecret special groupí that knows
each other on sight and can talk to strangers and not really be strangers. I want
to have another baby, but I wonder if a Ďtypicalí child can be as beautiful as
my Ďspecialí child." Deuteronomy 11:26 "I am giving you the choice between
a blessing and a curse." Obviously this Mother took the blessing.
L. Luce a professor of biology, ethics, and the politics of human reproduction
at Wellesley College and co-leader of the Project on Prenatal Testing for Genetic
Disability, sponsored by the Hastings Center in Briarcliff Manor, New York. Says,
"Weíve created pre-natal diagnoses because we think itís bad to have a disability.
Too many woman rush into abortion because of stereotypical notions about disabilities,
and refuse to educate themselves."
Knowledge is power. Fear of the
unknown has to be alleviated by learning. We donít know what we donít know until
weíve learned what we didnít know.
In an article in the Journal of Mental
Retardation entitled "Ethical and Legal Issues Regarding Selective Abortion
of Fetuses With Down Syndrome, Noreen M. Glover and Samuel J. Glover wrote, "Society
apparently considers mental retardation to be a disability of such magnitude that,
by itself, is sufficient reason for termination." And, "Even persons
who otherwise describe themselves a pro-life advocates may make an exception in
the case of a fetus with a disability." Another excerpt, " Test results
cannot determine the extent of damage to the intellectual capacity of the fetus,
which can range anywhere from mild to severe." AND, " Although society
in general may consider the birth of children with Down Syndrome to be burdensome,
most Mothers of such children do not agree. Elkins in his research found that
over 84% indicated the experience as Ďrewarding overallí and that their marriage
and the family had been brought closer together." It is a sad but true statistic
that over 90% of the babies parentally diagnosed with Down Syndrome are aborted.
These are very viable lives that hold so much potential.
Knowledge is power.
Most people with a prenatal diagnosis tell no one and make a silent decision.
Their Dr. may have old information on the possibilities for the future of a child
with a disability. The last time they may have heard about the diagnosis is over
30 years ago in one lecture in Medical School.
The Mothers who do tell
friends get awful responses. Since their friends canít imagine this happening
to them, they say something like, "Youíre going to have an abortion arenít
you?" Or, "Itís not fair to burden your other children by choosing to
have and raise a handicapped child." Or, "Lifeís too short, you donít
need this hassle." Wow, how poignant, Life indeed is too short for the baby
never given a chance to live. Proverbs 19:21 Many are the plans in a manís heart,
but it is the Lordís purpose that prevails."
Yes, God gives special
people special children, but he doesnít want his gift given back by an act of
human weakness such as an abortion. A child is a child first, disabilities and
disorders come last. Colossians 3:11 "In this new life oneís nationality
or race or education or social position is unimportant; such things mean nothing.
Whether a person has Christ is what matters, and he is equally available to all."
deserve a badge of courage for accepting lifeís greatest challenge---having a
child. Those of us who want to be parents accept that difficulties occur with
all kids...Thatís life.