How To Be A Good Friend To A Special Needs Mom

This is the second guest post from Andi Sligh, who blogs at Bringing the Sunshine. She recently published There’s Sunshine Behind the Clouds: Surviving the Early Years as a Special Needs Mom, a free e-book for parents at the beginning of their special needs journey.

If it hasn’t happened already, the child of one of your friends will be diagnosed one day with Down syndrome, cerebral palsy, autism, or another permanent condition, changing your friend’s world forever. When that day comes, you’ll be afraid and nervous – your friend has crossed into strange territory. You don’t want to say or do the wrong thing. What she needs is a “foxhole friend”—someone who won’t run away in fear, but will stay by her side in the heat of the battles that lie ahead. You want to be a foxhole friend, but you don’t know how.

In the world of special needs, I’m a veteran. I have two children with disability—my daughter, Sarah Kate, was born with cerebral palsy, my son, Nathan, with Down syndrome.

 

 

Although I don’t have as much time to spend with my friends as I’d like, I treasure the friendships that I have (that’s me above with my friend Stephanie at the Walt Disney World Resort Marathon last January; I was running for Research Down Syndrome in honor of Nathan). Following are some tips on how to build a bridge to your friend’s strange new world.

Don’t use clichés, no matter how well meaning. When Nathan was born, I heard “God only gives special children to special parents” every day for weeks, and it made me uncomfortable. I knew I was no saint, but I felt pressure to act like one – to never admit disappointment or struggles or failure. That simple, well-intentioned statement was a burden that made me feel isolated and alone. God does give special children to very un-special parents, and some people do get more than they can handle. Even if clichés weren’t hurtful, everyone says them, so they get old quickly. After Nathan was born, my OB-GYN came into my room to see me. My pregnancy had been high-risk with a few hiccups along the way, and my doctor had treated me as if it were his life’s work to get my baby and me across the finish line safe and healthy. He sat down at the end of the bed and with a smile said, “Doggone it!” That simple action spoke to me in a way that none of the clichés did—he acknowledged that things hadn’t turned out like we expected, but that it was a small setback, not a tragedy.

Embrace the child from the first moment. I know it’s scary +the medical jargon makes the child seem fragile and you don’t want to mess up! But she’s still a child who feels, hurts, and needs love. See the child first, but don’t feel like you have to ignore the diagnosis. Ask questions and show interest—it’ll show the mom you’re in it for the long haul—or even better, do some research on your own so you’ll know the basics without having to ask. One of my favorite photos from Nathan’s first few days of life is of my sister holding him in her arms. She lives several hours away but had cashed in some frequent flyer miles to race down to be with us. I love that photo because there is nothing in her expression to indicate anything is amiss; she is simply a proud aunt, smiling for a photo with her new nephew.

Ask the mom how she’s feeling and what you can do to help. Sometimes the shock of the diagnosis makes it hard to manage the simplest things, like dinner. Some children are so medically fragile that their care consumes the parents’ time. Offer to babysit her other children, bring meals, do laundry or make update calls to her friends and family for her. Listen when she talks, and hold her hands when she cries. I remember every person who brought us a meal in the early days, and I have a special fondness in my heart for my husband’s coworker who brought me a laptop in the hospital so that I could write.

Don’t indicate in any way that the child is replaceable or “less than” any other child. Even if a friend is devastated, she doesn’t want to hear “you can try again” or be reminded that she already has X number of healthy children. This child is where her focus is, and she loves and values him for his own sake. Sarah Kate was born premature and when she was less than two weeks old, with no end to her NICU stay in sight, my husband and I were talking with two family members and expressing our frustration about our bad luck—we had already lost two children. One of them piped up and told us that we shouldn’t give up on having another child, and it cut us both to the core. Our tiny baby was struggling for survival, and the thought of other future children seemed disrespectful and cold.

Always take your cues from the mom. She may go through denial, anger, bargaining, and depression before she reaches acceptance. Support her grief, celebrate her child, and encourage her at each step along the way. If you can be the person who recognizes her needs and responds without hesitation, you’ll be her foxhole friend for life.

Check out Andi’s previous post: What To Expect Of Friends When You’re A Special Needs Mom

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  1. by Seven Snippets: September 13, 2013

    On September 13, 2013 at 11:28 am

    [...] change when you become a special needs mom; this week I address the other side of the coin: how to be a “foxhole friend” to a special needs mom. Thanks again to my friend Ellen Seidman for the [...]