Grappling With a new Diagnosis

  • By Springible Contributor
  • Reading Time About 6 minutes
  • PostedMarch 7, 2019
  • Category

What’s your story? Tell us about yourself!

When I got pregnant, I loved my career and figured I’d never not be marketing and traveling for fun, high-tech companies. I put a deposit down on a daycare, and assumed I’d be pumping breast milk behind closed doors while my son was cared for by others.

Four days and 40 phone calls after he was born, I quit my job. Once my baby was here, I couldn’t imagine leaving him in anybody’s care other than my own. While a few of the early days found me in tears at 11:00 am because I had no idea how to fill the next eight hours as we’d already eaten twice, been on a walk and to the local playground, I didn’t want anybody other than me to have those moments. Later, when he wasn’t talking but “should have been,” I knew I’d made the right decision staying at home with him.

Today, I work part-time, volunteer at his school, and have time to be a “mama bear” when needed. I also have time to write and draw stupid-looking pictures for my website, Finding Ninee, which is my favorite kind of therapy. I also write for a variety of parenting websites and am working on a novel.

Tell us about your son…

My son is eight years old now, and way too tall for my liking. I miss the days of being able to pick him up and swing him around but also cherish new conversations we’re having as he matures. His official diagnosis is developmentally delayed, sensory processing disorder, and speech and language delays. He’s also low on motor skills and dexterity and is a bit socially awkward, although much less so than he used to be. It’s difficult at times because he’s a kid who “passes” as typical (with the exception of speech) until you spend more time with him.

He’s always been a bit of a mystery. When he was three years old, he attended Preschool Autism Classroom, and was mostly non-verbal and had other spectrum-related symptoms. I’ll never forget the day we went to an evaluation for services and (of course) he was on his worst behavior. One of the evaluators got close to my face and said “I’ll tell you right now – this is NOT just a speech delay.” I suppose I remember that because first, I’d been so hoping that it was a simple speech delay. I’d heard that boys who stayed at home with their moms were late to talk, that Einstein didn’t speak until he was four, that not having him in daycare meant that he “didn’t have to speak – after all, you give him what he wants.” I had a lot of guilt and mixed feelings about that.

I accepted that he was likely autistic, and agreed with parents of other kids on the spectrum about the wonders of ABA therapy. Later, we learned that ASD isn’t the right diagnosis for him. He’s taught me tolerance and acceptance in a way I don’t think I’d have learned had I not become a mom who wants to change the world to be more accepting of everybody.

How has your mindset changed after having a child with special needs? 

Years ago, I thought that the decent thing was to pretend I didn’t notice that a person was in a wheelchair, or had a visible disability. I didn’t know what to do or say, and so I turned away. After having my son, and seeing not only him but other children with varying challenges in his special education preschool, I realize that everybody wants to be seen. Everyone wants to be acknowledged.

Today, I take the time at the grocery store to have a conversation with challenged workers. I slow down and smile at a mom who pushes her son up the ramp in a wheelchair. I write about special needs, acceptance, and wishing for a land of empathy and wonder.

My son made my world better. He made this world better.

Do you have time right now to practice self-care or is your life too hectic for that right now? 

Writing for Finding Ninee (my blog) is my go-to for self-care, although I also enjoy being outdoors. There’s something about walking, or simply sitting, and wondering about the people in cars driving by. Where are they going? Are they grieving? Celebrating? Being outdoors makes me feel so much more connected to the lives around me and to possibility.

Why do you think the mission of Springible is so important?

Whether you’re caring for a spouse, a child, an aging parent or other, it’s consuming. You question whether you’re doing enough. Springible is important because caring for somebody with differing needs can make a person feel very alone. Nobody gets it and frankly, you don’t have the time to explain it to them. Sure, they want to help, but they don’t know what it’s like to have to do (fill in the blank) at 3:00am, and part of you thinks they shouldn’t have to. So you feel alone.

Except that you’re not alone. There are caregivers all over the world who check their phones and their laptops at 3:00am or while their loved one is sleeping. Simply reading a story about somebody who “gets it” is a valuable connection and reminder that none of us are alone in our experiences. Reading similar stories opens up our worlds. It opens up our lives, and gives us a “uh-huh! And an AMEN!” when we most need it. Springable’s doing that for caregivers, and I love that.

What are some things you’ve learned on this short journey as a caregiver that you could offer to someone else who is JUST NOW stepping into this journey for the first time?

The most important thing to know is that the baby you hoped for, carried, gave birth to, and played with on the playground is still the same person after a diagnosis. He’s still the one you fell in love with before he was born. He’s still the one you know best, even before a doctor, a teacher, or a family member told you that something wasn’t right.

Whatever isn’t right with him is part of his him-ness. The diagnosis isn’t an ending – it’s a beginning to know how to best help the person you love most, and having some answers regarding how he needs to learn further helps you to help him. I’d also tell then-me that there’s a whole world of people who “get it.” I’d have liked to know that earlier than I did.

– Kristi Campbell, Springible Contributor