The receiving line at a co-worker’s funeral. Chair-side at a sister’s chemotherapy treatment. The first time you meet your baby nephew, who happens to have Down Syndrome.
Everyone has been in the dreaded “what the heck am I supposed to say?” position, and no one has the magic answer.
Parents of children with a new diagnosis are vulnerable. What you say and do can be a powerful force in either a positive or negative direction.
What to say
- Avoid clichés like “God only gives us what we can handle.” The statement can bring guilt and shame to someone who feels overwhelmed and filled with doubt. Think about what you really want to say, and use your own words.
- Avoid overstatements like “You’re a saint.” Truth is, no parent is born with super powers, nor are they especially prepared for the challenge of raising a child with a disability. It’s more effective to say, “You’re doing a great job” and “He’s lucky to have you.”
- Offer to cry with them. Most parents do conclude that their child is a blessing who has forever changed their lives for the better, but there will be periods of grieving that crop up during the child’s life. Validate those feelings with a hug and an offer to share in their grief.
- Be yourself. Pay attention to how you react to typically developing children. Parents and children just want to be treated like anyone else. Be genuine; parents and kids can tell when you’re faking it.
- Learn to be a compassionate listener. Don’t offer solutions or try to fix anything. Don’t tell stories about people who have it “worse.” Listen. Ask questions to show you’re interested and that you care.
- Don’t compare children. This is a good rule for all parents, and no one wants to be reminded that their kid is delayed or struggling. It’s important to share stories about your kids, sharing the things they do that bring you frustration as well as joy.
- Don’t ask questions with hidden judgments, such as “Didn’t you have prenatal testing?” These questions will only reinforce fears and doubts. If the parents bring up these topics themselves, listen with compassion and remind them what they are doing right.
- Avoid telling them how you think they should feel. Chances are they won’t appreciate hearing, “You shouldn’t feel that way…” Even if you don’t understand, those feelings are probably serving a purpose.
What to do
- Celebrate the child! If a baby isborn with a significant disability, move forward and rejoice in the birth as you would any child. Make the call, congratulate the family, and bring a cute outfit. As the child gets older, celebrate accomplishments.
- Focus on the positive. Consider this a time to grow in your outlook on life. You may think a college education is important, but what you really value is lifelong learning. Think about the qualities this child possesses, and be sure to share this with the parents.
- Figure out how to help. Many parents of children with special needs are mortified at the thought of being a burden to their families and to society. People who had been self-sufficient may suddenly need help from public agencies. Listen for clues like, “I never have a quiet hour to talk to the insurance company” or “I have to drive across town just to buy supplements.” Jump on the simple ways you can help.
- Offer up specific favors, as in, “I would like to bring you dinner on Friday. Do you like enchiladas or lasagna?” Offer to spend time with siblings. “Can I take the girls to the movies tomorrow afternoon so you can have time alone with Jake?”
- Be patient. Parents of a disabled child will go through stages of grieving over and over again. A parent may have been in acceptance for a year until their child could no longer make it academically in a mainstream setting. This may spark anger or depression. It is a necessary process, and your patience and understanding will be invaluable.
What exactly do parents grieve? The child they dreamed about all of their lives, Saturday morning soccer games, walking her down the aisle and perhaps even future grandchildren.
Bottom line: a little self-reflection goes a long way. Re-evaluate judgments you hold towards people with disabilities and open your mind to the blessings every person brings. If you can honestly accept, love and find joy in every child, it will be hard to go wrong if you honestly speak your thoughts, because your words and deeds will be shared in the spirit of love.
Jennifer VanBuren is a Georgetown educator and mother of three boys, the oldest of which has special needs.
