The Interviews: What It Feels Like to be a Special Needs Mom

Kristi Finding Ninee-smMeet Kristi, author of Finding Ninee. Kristi writes about what it feels like to be a special needs mom. With a mix of humor and compassion, Kristi started with a memoir that turned into a blog that helps other special needs moms like me.

Kristi shared with us how telling your story can help you as much as it supports others.

Tell us about Finding Ninee and the Middle World.
When my son was two, we had his regular check-up. I’d mentioned that he wasn’t talking, and his doctor told me that was okay. After all, he’d been at home with me and “didn’t need to speak,” as I knew what he wanted. That year, I’d planned a trip away from my son for the first time, and worried whether my husband would be able to care for our son alone. “Well,” he said, “by then, he’ll be talking so we should be fine.” He wasn’t yet speaking and after the trip, I became convinced that Tucker had autism. We sought early intervention, and I read a kazillion articles about autism and then became convinced that’s not what he “had.”

I started writing, knowing that surely, other moms were in the same situation — living in the “Middle World,” where you know your kid is delayed but there’s not a diagnosis. It’s not autism, said his doctors, but what is it? I felt alone, and wanted to find other parents like me. I thought about writing a memoir, and actually started one. Then, I read that a publisher would rather shave a cat than read another memoir, and so I Googled “how to start a blog.” That’s how Finding Ninee and The Middle World came about for me.

What would you like to share with other moms and dads struggling as a special needs parents?
Hang in there. I promise that it gets easier and better and never ever put limitations on your child. Ever. He or she will amaze you. No matter what. Also? It’s totally okay to grieve the child you’d imagined. I think there’s so much guilt out there from parents who are sad and also grateful for the kid they have. And all of its okay. We can love our child to the moon and still acknowledge that he or she is a little different than our dreams were. Earlier dreams don’t make our love for what we’re given any less real.

You had a wonderful opportunity to read What it Feels Like to Be a Special Needs Mom in front of Listen to You Mother’s live audience in DC. Tell us about that experience. 
I’d probably been writing publicly for less than a year when I wrote the original piece. I’d had a playdate gone bad, where a friend had come over with her daughter and left after a few minutes. I felt alone and wanted people to know what it felt like to have your imaginary son talking to you at the front door…. When your real son didn’t talk at all and a friend leaves with her daughter after a few minutes because “your son doesn’t know how to play.”

I wrote feeling the pain, and later auditioned for Listen to Your Mother. It’s funny – I actually asked the producer and director whether it’d be okay for me to read something else, because I thought that piece “sucked” (OMG writers are hard on ourselves). They said no, and I ended up reading it almost a year after writing it. It was one of the best experiences of my life, and something I will always be proud of, in spite of the fact that some special needs parents feel that I was a jerk by saying I mourned for the baby I’d dreamed of.

Thank you for raising awareness and acceptance for special needs. How can others get involved and help in their communities?
Tell your stories, good, bad, ugly and beautiful. Just talk about how you feel. Don’t know how to say “hi” to the mom who’s son is in a wheelchair? JUST SAY HI. It’s enough. Be open.

What would you tell yourself if you were able to step back in time to the beginning of this journey?
Oh wow. That’s a hard one because the fact is that we all come to accept and advocate in our own time. I remember reading about people who were all like “I accept my kid as he is,” which of course I agree with but I also always felt like “I’m going to do everything I can to help my son adjust to this world AND – maybe more importantly – make this world accept my son as HE IS, now…”

I think that if I could tell a new mama on this journey anything, it’d be that life is going to be full of light and beauty even when it’s not what you’d planned on it being like.

About Kristi

Kristi-CampbellKristi Rieger Campbell’s passion is writing and drawing stupid-looking pictures for her blog, Finding Ninee. It began with a memoir about her special-needs son Tucker, abandoned when she read that a publisher would rather shave a cat than read another memoir.

Kristi writes for a variety of parenting websites including Huffington Post Parents, has been published in several popular anthologies, received 2014 BlogHer’s Voice of the Year People’s Choice Award, and was a proud cast member of the DC Listen to Your Mother show. Find her on Twitter, Facebook, and Pinterest.

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