Our son Sean was born with Down Syndrome almost nine 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 our news, 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.” With Sean in intensive care, I didn’t have the emotional energy to deal with their sadness; I loved my new baby no matter what his diagnosis.
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 any place 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 won’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, to come 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, although a few ignored it and apologized anyway. The bottom line is people don’t know what to say. Consequently, they resort to cliches and sorrow.
So since our moms never told us “What to Say” in this area, I’d like to share with 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 talking to more than 100 such parents about the “Things to Say and Things to Not Say,” I’ve realized how much this information is needed.1
Right now you may be thinking, “This won’t happen to anyone I know.” But according to the CDC, 1 out of every 33 babies is born with a birth defect.
First you must understand what the family goes through when a child is born with a diagnosis. 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 nine 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. The process consists of (in no particular order) Denial, Anger, Bargaining, Depression, (and 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. Be humble gentle, and patient. 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? 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. If you avoid your friend you will truly be missing out on getting to know an exceptional person – her child.
What Not to Say
- “They all . . .” One thing to always avoid is the stereotypical “They all” types of statements. Every person within in any disability is an individual, they aren’t “all” any one thing.
- “I’m Sorry.” “What a Shame.” “How sad.” “Poor thing. ” Or any statement that conveys pity.
- “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?”
- 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.
- “God gives special children special parents.” Don’t try to explain why God 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 from 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. 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.”
- Conveying sainthood. Don’t tell parents “I couldn’t do it.” I couldn’t handle it.” “You’re 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.”
- “They’re such happy and loving children.” This one is specific to Down Syndrome, but I have to throw it 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 the parents I spoke with understood is that nobody means harm by any statement. All things said were with good intentions. Everyone realizes that no one has ever been told “What to Say” . . . until today.
What to Say
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 nine months of pregnancy, labor, and delivery. They do deserve to be congratulated. The responses from parents who gave birth to children with a diagnosis told me these are things they liked to hear (after congratulations):
- Give them help. 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. 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. 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.
- 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 will 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 to trust your own instincts and she’ll do just fine.”
- “He looks just like his Dad.” Like parents of any child, we love it when people notice similarities between us and our children. “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.”
- Show acceptance. 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 ___ with all our hearts.” “You are so lucky to have ___, he just brightens my day when I see him.” “I feel lucky and honored to know her.”
- 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.”
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, 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, here are a few things to keep in mind:
- Speak positively. 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.”
- Never assume. 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. One act of kindness can change someone’s outlook.
- Think before you speak. 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 five years old. Research is moving so fast that information quickly becomes 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.
- Offer help. Another scenario: your friend has a child who is acting differently or has areas in which he is developing slowly. She says to you, “I’m concerned that my child’s speech is delayed,” or “Johnny acts different than your 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. Many moms of children who are delayed want to have friends who will help them to help themselves. Often 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 doctor?” 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.
And now I have to get up on my soapbox. Your friend who is pregnant calls you in tears. The doctor just told her that her unborn baby will have Down Syndrome, Spina Bifida, or any other birth defect that can be prenatally detected. She has been given one week2 to decide whether to have the baby or terminate the pregnancy. What do you say?3
- Encourage her to connect with people who have been in her shoes. 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.” Help her connect with a local support group for that particular disability; it’s very easy to Google and find them.
- Reassure her. “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 doctor, your family, or anyone else to make the decision about this baby.”
- Present other options. “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.”
I received this from a 41 year old man who was born with Spina Bifida:
When I was born, the doctors told my parents I would never walk. I now regularly hike in the Great Smoky Mountains National Park. No doctor 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 seven 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 we 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 her and do everything in your power to help 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.
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.
If you are the parent of a special needs child, what do you wish people would have said (or will say) to you? What do you wish they would not say?
Sandra Assimotos McElwee, an advocate for unborn babies with Down syndrome, started one of the first websites for parents with a prenatal diagnosis. Sandra is an accomplished sales representative currently selling medical devices.
While excelling as a professional sales person, McElwee continually contributes to her community.
This article has been edited from a version previously published at Diagnosis Down Syndrome.
- I did my research through Internet newsgroups. These are diagnosis-specific online support groups where parents can ask advice of hundreds of other parents who have already experienced a particular problem they may be having. 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 and what they didn’t like to hear when people were commenting on their child. The newsgroups I contacted were Down Syndrome, Autism, Deaf, Attention Deficit Disorder, Cerebral Palsy, Spina Bifida, and Apraxia. ↩
- 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? ↩
- A note from Dionna and Lauren: As cofounders of Natural Parents Network, we believe in the right of every woman to exercise reproductive choice. We are, however, also comfortable presenting the opinion of this author. As always, please use discretion in responding to such an emotionally-charged topic. You can read our full comment policy for more guidance. ↩