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!
What To Say (Speech) By Sandra Assimotos-McElwee
The 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 didn’t ask "Why Us?’ 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.
After telling four friends of his diagnosis over the
phone and in person I really didn’t like their reactions.
They were getting upset and apologizing. Their "I’m
sorry’s were compelling me to comfort them and tell them
"It’s O.K." and I didn’t 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 couldn’t
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 son’s 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
can’t 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 wouldn’t feel the need to have an
immediate response. We hope you will feel the same as
we do, we’re 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, we’re a family now. This is not a sad
moment, PLEASE do not apologize, we aren’t sorry. We are
still gathering information on Down Syndrome and probably
won’t 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, he’s just got an extra chromosome.
Almost everyone responded the way we asked, a few ignored
it and apologized anyway. The bottom line is people don’t
know what to say. Consequently, they resort to cliche’s
and sorrow.
So since our Mom’s never told us "What to Say’ in
this area I’m here to report to you what parents who have
a child with a diagnosis of any kind want to hear and
what they don’t 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 Say".
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
didn’t 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 won’t 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 aren’t diagnosed until the child is older. These
numbers have remained the same since the United States
began keeping detailed statistics in the 1960’s. 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 didn’t understand that I didn’t 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 God’s 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 child’s
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 other’s 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 your test.
In Mark 12:28-31 "He asked him" (meaning Jesus)
"Of all the commandments which one is the most important?
‘The most important one,’ answered Jesus, ‘Is 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: ‘Love your neighbor as yourself."
Sadly many old friends will avoid contact with the family
because they don’t know what to say. Don’t be a coward.
Don’t 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 other’s troubles and problems
and so obey our Lord’s 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. "I’m Sorry." "What a Shame." "How
sad." "Poor thing. "Or any statement that
conveys pity.
2. 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, that’s real comforting. "They all
look the same of course." "He’ll never be able
to drive a car." "How severely is he affected.?"
3. 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. Don’t say, "It’s a result
of family problems." "I heard it runs in families,
so I guess you are responsible for your child’s problems."
Maybe if you were a better parent you wouldn’t have this
problem." " "You didn’t talk to him enough."
"What did you do wrong?"
Yes, all these things were said to the parents who wrote
me. Sad but true. Proverbs 18:21 says, "Words kill,
words give life; they’re 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 isn’t loving and kind, it shows
that he doesn’t know God, for God is love."
4. Don’t 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 isn’t the same for every parent. Trying
to give some ‘pat’ 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 ‘Was
a Gift from God’ 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 doesn’t mean some children
it means all children. Another Mother wrote, "God
didn’t 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."
5. Sainthood. Don’t tell parents "I couldn’t do
it." I couldn’t 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 we’re dealt, and maybe it isn’t 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, "They’re such happy and
loving children." Well, aren’t all children? One
parent wrote, "What about when they’re no longer
children? Oh great I’ll have a 35 year old child."
Another said, "Yes he smiles, he also has temper
tantrums. He gets happy AND sad. He doesn’t just live
in his own little world."
One 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: (after Congratulations)
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 don’t 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 don’t 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 friend’s ear. "You and your
husband need some time to yourselves, can I baby-sit?"
Say concrete things not ‘let me know if you need anything’.
Be available, it is not the new parent’s job to pursue
you. Proverbs 3:27 "Whenever you are able, do good
to people who need help."
2. Compliment the child and the parents. "She’s
a wonderful baby and lucky to have parents who love her."
Or, "Tell me about ___(Use the child’s name)"
"You will make a difference in his life." "I’m
sure this present many challenges, but I know you will
figure out how to meet them." "Can I hold her?"
"I don’t 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 she’ll 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 also doing."
3. As parents of any child we love it when people notice
similarities between the parents and the child’s facial
features. "HE looks just like his Dad." "She
looks just like you did at her age." "What a
doll." "She’s got your nose." "What
a beautiful boy, you must be so proud." One verse
I’m 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 child’s name) has changed
our lives forever." "He will teach us more than
we will ever teach him." We love___(use the child’s
name) with all our hearts." "You are so lucky
to have___(child’s 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 don’t mean to minimize that with all these positive
statements. Some things to say would be, "I know
I can’t 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 don’t 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 don’t really need to comment on the child’s 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 child’s 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 wasn’t there, like at school
or Church. Compliments like, "You’re a great advocate
for your child." "He’s growing and doing so
great, I think that is so wonderful." If the child
is deaf ask, "How do I sign to her?" "He’s
improved with his speech, I’m hearing him say words more
clearly."
2. If you encounter someone in a store whose child is
acting out, don’t 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 don’t know
the person doesn’t mean they aren’t still your neighbor.
One act of kindness can change someone’s 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 child’s 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 ‘label’ for their child.
A favorite quote of mine is from Cathy Lette’s book entitled,
"Mad Cows", it goes, "A closed mouth gathers
no feet." Or the Proverb 21:23 "Watch your mouth
and hold your tongue; you’ll save yourself a lot of grief."
Another 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, "I’m concerned
that my child’s speech is delayed", or "Johnny
acts different than you son, I wonder if something is
wrong." Please don’t avoid this conversation and
take the easy way out by saying something like, "All
kids develop at different rates," or "He’ll
outgrow it." You will probably be uncomfortable that
she may be right. Then say what many Mom’s of children
who were delayed want to hear:
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."
The 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
‘normal’ 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 Doctor’s 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 ‘Say" 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 mother’s womb. It’s 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 don’t 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 it’s like."
2. "I 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, don’t 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."
3. "If 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 can’t imagine what you are going through now,
I do know that children with Down Syndrome aren’t 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 isn’t fair the option of an abortion even exists.
How can you make a rational decision in one week’s time
at the most emotional hormonal time in a woman’s life.
In Ecclesiastes 3:18 explains why such choices are available,
"God is letting the world go on it’s sinful way so
he can test mankind and men will see that they are no
better than beasts."
I received this from a 41 year old man who was born with
Spina Bifida, "When I was born, the Dr.’s 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 child’s 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. They’re the ones with the disability! If you can’t
educate them, disregard them. Don’t waste emotional energy
on fools."
Every 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.
One Mother 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 didn’t 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? I’ll help
with the baby if he’s broken." Out of the mouths
of babes. The truth in this statement is you can’t 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 her.
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 ‘secret special group’ 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 ‘typical’ child can be as beautiful
as my ‘special’ child." Deuteronomy 11:26 "I
am giving you the choice between a blessing and a curse."
Obviously this Mother took the blessing.
Henry 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, "We’ve created pre-natal diagnoses
because we think it’s 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 don’t know what we don’t know until we’ve
learned what we didn’t 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 ‘rewarding overall’
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 can’t imagine this happening to them,
they say something like, "You’re going to have an
abortion aren’t you?" Or, "It’s not fair to
burden your other children by choosing to have and raise
a handicapped child." Or, "Life’s too short,
you don’t 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 man’s
heart, but it is the Lord’s purpose that prevails."
Yes, God gives special people special children, but he
doesn’t 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 one’s 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."
You deserve a badge of courage for accepting life’s greatest
challenge---having a child. Those of us who want to be
parents accept that difficulties occur with all kids...That’s
life.
Thank you.