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What to Say ?

 

Sandra Assimotos-McElwee 
Sandra is mom to Sean, a child born with Down Syndrome. She has produced a website featuring useful information and support for those facing the diagnosis. 
 
("What to Say" was originally written as a speech and presented to a Christian Mothers Group)

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 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.

After telling 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 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 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 your test.

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.

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, thatís real comforting. "They all look the same of course." "Heíll 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. 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?"

Yes, 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."

4. 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."

5. 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."

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 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 help."

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 also doing."

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."

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, "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 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 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."

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, 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."

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 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 than beasts."

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."

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 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 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 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.

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, "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."

You 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.

 


 

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