A wonderful young mother recently asked me for some advice. Her best friend in another state has a toddler diagnosed with Down Syndrome. But no one seems to be talking about it, nor acknowledging it. “What should I do, and how can I help?”
I was touched by her question because I knew she really cared and wanted to do the right thing. But she felt fearful and awkward about doing something hurtful.
That is a common problem for many family and friends of parents who have a child with “special needs.” It doesn’t matter if the diagnosis is down syndrome, cerebral palsy, autism or Fragile X, these parents love their babies as any parent loves their child. The children are children, not the diagnosis.
I like what Ellen Seidman writes in “Love that Max.”
“Our children are not tragedies. They are our children, as loved, adored and hugged as much as any other child. They make us laugh. They bring us joy. They fulfill us. So please spare us the pity about our kids — but feel free to nod sympathetically if we gripe about all the medical appointments, therapies and extra paperwork we juggle, not to mention the costs. Or just bring us chocolate.”
Or coffee…or wine…..
Raising a child with extra challenges is tough. But guess what? Tough is an equal opportunity employer for every parent. Here’s what I recommend to develop a more supportive environment for new parents of a baby with a “diagnosis.”
- Offer to pick up and cuddle the baby. Children with a diagnosis don’t break. It makes the parents feel great to see you hug and snuggle their child. You’ll be surprised at how wonderful you feel holding their baby.
- Begin a frank discussion with the parent. Say something like, “I want you to know I think your baby is beautiful and I can’t wait to meet her.” Follow up with,” I’ll support you however I can. I am always here to talk, no matter what.”
- It’s okay to ask the parents what their toughest challenges are day to day, and there are many. Then you can share what your toughest challenges are raising a child. You’ll be surprised at how similar the parenting of children with and without disabilities are. You’ll also gain new respect and marvel at the great expertise that parents have in problem solving for their children with extraordinary challenges.
- Ask them about their child. What does he or she like? Ask the parents to describe the joy that their child brings to their family. You’ll gain more insight into joy in your own family.
- If you have children, offer future or current play dates. “I can’t wait for our children to play together.” Parents of children who are “special” often see their children being left out, and that translates into isolation for everyone.
- Avoid clichés. I hated the phrase that God only picks “special parents” for his “special children.” It felt hollow and did nothing to help me with the day to day routine of parenting and often caregiving.
- Talk about anything you would to any parent. Where does your child go to school? Where have you found baby sitters? What restaurants are the most child friendly? Where can you get swimming lessons? Parents of special needs children do feel lonelier at times because others are simply afraid to ask them questions.
Talking is the first step towards inclusion.