Accepting a special needs diagnosis for a baby can be a vulnerable time for parents. How can you help? Here are 17 ways you can show your support.
Sometimes friends are so afraid to say the wrong thing, they avoid talking about important issues altogether, which can send the message that they’re uncomfortable. After we received my daughter’s Down syndrome diagnosis, I told friends, “It’s okay to say the wrong thing.” When people asked questions (gently and respectfully), it showed they cared. That’s all friends need to know—that you deeply care.
Intimidating diagnoses can sometimes overshadow the celebration of life to the point where parents quickly forget that they’re entitled to certain rites of passage with welcoming a baby. Give your friends the gift of talking about their baby: “I wonder who he’s going to look like!” or “Just think, next Christmas you’ll be holding a six-month-old! We’ll have to get her a Santa hat.” Dream with them!
Before you take it upon yourself to start Googling and send your friends articles and packets on syndromes and conditions, ask first. Your friends might not be ready to read potentially intimidating information. Given permission though, helping parents find valid information and resources can lessen an emotional and time-consuming burden.
When you ask a worried parent a broad question like “What can I do?,” they may be too overwhelmed to think of something specific. Let them know you are going to help, but narrow down the choices for them such as, “What would be more helpful for me to do—organize some meals, watch your kids, send a gift card or come sit and listen?”
A great way to support your friends and show you care is to educate yourself about their baby’s special needs. The more you know, the less intimidating an issue will be. When friends talk about Down syndrome with me and reveal their understanding of Down syndrome terminology, it’s an endearing sign that they’ve done some homework and are interested in my child’s well-being.
Important especially for birth diagnoses, one of the best gifts you can give your friends during this emotional time is your celebration of their new baby’s life. Bring flowers, balloons, tape posters to the wall, offer to bring treats for visitors. During an uncertain time, help to at least create a warm, comforting atmosphere for family that says, “Welcome Baby, you are loved.”
Many parents who have babies who are given an alarming diagnosis at birth have more important worries than taking photos of their new baby. Looking back, many wish they had some memories captured from those early days. A kind offer to take some hospital photos and save them for later might be incredibly meaningful to new parents.
Whether given a prenatal or birth diagnosis, baby gifts—outfits, blankets, cherished keepsakes—are an important reminder that no matter what challenges may come, every new life deserves celebration. These gifts help maintain a sense of normalcy and highlight the anticipation every couple deserves of watching their baby grow. Special needs does not mean you need a special gift. All babies need clothes, blankets and books.
Any parent who’s ever endured a long NICU/hospital stay for a baby will tell you that it’s extremely physically and emotionally taxing for a family. The smallest efforts go a long way. Offer to help watch kids, bring meals, house sit or care for pets. When I endured ten days in the hospital with my firstborn, I loved when friends brought magazines, books, CD mixes and anything to make me feel less stir-crazy.
If your friends have other children, one of their concerns will be making sure each of their children feels loved during a time when they might be challenged to offer attention to siblings. Help them out by bringing sibling gifts, activities for the hospital and by paying special attention to brothers or sisters who might need extra support.
Some special needs require countless doctor appointments and tests which can be overwhelming for parents. If you feel your friend would be comfortable with your company, offer to attend these appointments with her. Sometimes it’s difficult to translate medical information through emotion, so extra ears can come in handy (take notes!).
Being a cheerleader and a member of the optimism club can be great, but make sure you’re sensitive to your friends’ needs to express whatever emotion they may be feeling. Let them know you’re there to listen, even if what they are feeling might be uncomfortable to hear. Allow your friends moments of vulnerability and offer tissues and love more than advice.
If and when your friends decide to start an organization, create a team, attend a walk or organize a fundraiser on behalf of their child, be the first to sign up for their team. Spread word, buy the t-shirt, show up at their first big event. I promise you, they won’t forget that you did.
Supporting friends through challenges presents many opportunities to help. While being on the “front lines” of support might seem most important, remember there are other jobs with less glory that might relieve your friends more than you know. Filling out paperwork, helping to apply for aid, making appointments—offering to help with these time-consuming tasks is a great way to support loved ones.
The first few weeks after being given a special needs diagnosis can be an emotional time for parents. Sometimes the most meaningful support can come from simple texts or e-mails: I’m here if you need me, How are you feeling?, Thinking of you and that sweet baby.
When my daughter was born, people immediately supported me and my husband, but I worried about my new daughter—would her disability limit her friendships? Would she feel left out? I’ll never forget a friend who calmed my worries by saying, “Don’t ever worry about Nella not having friends. We’ve got that for you. We’ll teach our children to love, respect and protect her, and Nella will teach our children too.” That was important for me to hear.
Support naturally comes for families when it’s obvious they need it. Raising a child with special needs is a life-time commitment though, with challenges that evolve over time. Even if time seems to heal wounds and your friends appear to be doing well, periodically let them know that you haven’t forgotten they have added challenges and that you’re always available to listen and support them.