This guest post is from Andi Sligh, who blogs at Bringing the Sunshine. A mom to two kids with special needs, she says “We live with my adventurous husband,a wild Westie, a rescued Schnoodle and a worn-out pair of running shoes on the gulf coast of Alabama. Andi recently published There’s Sunshine Behind the Clouds: Surviving the Early Years as a Special Needs Mom, an amazingly inspiring and helpful free e-book for parents at the beginning of their special needs journey. Here, she shares her thoughts on the tricky territory of how friends react when you become a special needs parent.
Down syndrome. Cerebral palsy. Dwarfism. Autism.
Every day, children are diagnosed with these permanent conditions and others, rocking their parents’ worlds in an instant. I know what it’s like, because I’ve been there—twice. My daughter, Sarah Kate, was born with cerebral palsy and my son, Nathan, with Down syndrome. At first, I focused on the fear of the unknown: that my children wouldn’t be able to do, my shattered dreams and the impact my child’s diagnosis would have on our life and family. Later, my eyes were opened to the changes in my circle of family and friends. That woman in the photo above with Nathan, Katie, is one of my dearest friends. When he was born she helped spread the word to friends about his birth and subsequent diagnosis.
Me and the kids
Have you ever heard the phrase “foxhole friends”? Think of your friends and consider who you would want to have with you during a fierce battle—the ones who would “have your back” rather than run away in fear. Those people are foxhole friends, and having a child with a disability is one of the surest ways to learn who yours are. If you’re a special needs mom, especially if you’re new to this world, let me share with you a few things I’ve learned.
A lot of people are uncomfortable with disability. All your friends will be nice to you, but some will look through your child, rather than at him. When Sarah Kate was two, she learned to use a walker. It was slow going everywhere we went, but by using it daily, she progressed at a steady pace. One Sunday at church, another mom passed us in the hallway, smiled, and said, “She’s doing so well!” To most people, it would have seemed a harmless—nay, encouraging!—statement. But I knew it was just something she said to be nice; she hadn’t taken the time to look at Sarah Kate and notice.
Some of your friends may believe they don’t have anything in common with you anymore and drift away. Others won’t know what to say to you, so they won’t say anything at all. Others will be afraid, not of your child, but of getting too close. Your child is a reminder to them that bad things can happen to them. It will hurt. Don’t be angry, though, and don’t judge them. It’s okay to let them go if they aren’t able to be what you need them to be.
Other people will assume your child will “grow out of it,” believe the condition can be fixed, or say your child seems fine to them. Comments like these were common with both of my children: But she’s so smart and talks so well, she can’t have cerebral palsy!…. He doesn’t look like he has Down syndrome!.… It’ll feel like a big ol’ slap in the face when you hear those remarks. Don’t judge them, either, because they are doing what they think is best to buoy you. Most of them will come around over time, but it’s okay to let them go, too, if they aren’t able to accept your child’s diagnosis.
The good news: Your circle is about to change in a beautiful and powerful way. Some of your friends will do and say the right things, and you’ll become closer to them than you ever believed possible. Some casual acquaintances will be drawn to you and become new friends you never expected. They are the ones whose children will grow up with your child. Their children will appreciate disability and inclusion and that, my friend, is priceless. When my daughter was in kindergarten, I met a woman named Dawn. Her son was Sarah Kate’s peer helper at school—a relationship that had developed organically. Dawn and I were friendly, but not close, until Nathan was born. She called me while we were still in the hospital and said things to me that no one else had the courage to say. Three years later, she is one of my best friends.
Finally, you’ll meet a whole new group of friends in your child’s disability community. Veterans of the war, they understand your battles and the strategies you’ll need to employ to fight them. They will be a constant wellspring of information and support, and they won’t judge your gallows humor. You’ll make friends, too, in other disability communities, because there’s a kinship among special needs moms of all types.
Friendships are forged in the foxhole, and now that you’ve joined the ranks of special needs moms, it won’t take long to figure out exactly who has your back. It’s a gift that many people never enjoy.
Coming up next week from Andi: How To Be A Good Friend To A Special Needs Mom