| Jan Wagner

| In this exclusive excerpt from Donna M. Butts’s Grandfamilies: Stories of Children and the Loving Relatives Who Raise Them, Wagner tells her personal and policy story.

| I didn’t wake up when I was fifty-seven years old and say, “Gosh, I want another baby.” But my younger daughter had substance abuse issues. She came home expecting a baby; the guy had no desire to play a role. We tried to intervene in the substance abuse, and we brought her back home—to a house on our property.

I could tell right away that she wasn’t connecting with the baby, Nessa. My older daughter, Stephanie, who worked for an infant and toddler early intervention program, said, “You know, there are a lot of developmental delays going on here, and I’m really concerned.”

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Finally, I started to say, “This kid is being neglected. I can’t watch this happen.” If someone would call me, worried, I’d say, “Don’t call me, call protective services, please.” Records were made, but nobody ever did anything. Then, one day, my younger daughter said, “I’m going back to Grand Rapids.”

“Well, I’ll tell you what,” I said. “Just leave me guardianship and leave the baby here.” She went to CPS [Child Protective Services], which told her that no one gives up guardianship voluntarily and that she should leave power of attorney. She scribbled that on a piece of paper. At her older sister’s request, she also signed a paper that said that I could request evaluations for Nessa. I came home from work one day and found a note that said she left. “Go pick up the baby at day care.” And that was it.

We went through the evaluations with Nessa, and they confirmed that there was a lot of failure to thrive. She was two years old, nonverbal, not eating solid foods. She couldn’t go up and down steps. She had never slept in a crib, and she didn’t sleep at night. My husband and I now had this baby, and we were all just exhausted.

As far as CPS was concerned, this didn’t point a finger to neglect. Still, my granddaughter was two, behaving as though she were, maybe, fifteen months. And that, as far as the evaluators were concerned, was a huge gap.

We had caseworkers begin immediately. They came out and taught us all sign language; they showed us how to work with Nessa’s small motor skills and large motor skills. All this time, I was just like a deer in the headlights. As much as Nessa cried, she was also so distant. We didn’t then realize that she didn’t want to be touched. As she got older, we learned more and more. We had to ask to touch her: “Can I hug you? Can I give you a kiss?” A kiss on the top of her head—you could never do any more. Hug just a little.

She was just adorable, and the aunties wanted to pick her up. They’d approach her from behind, and she’d scream bloody murder.

One morning, about two years after Nessa began living with us, she was sitting in the family room with a cartoon on and she began to laugh. It struck me: I had never heard that sound before. What a bizarre thing!

I started looking into a support group for grandparents raising grandchildren, and I found there wasn’t anything out there. I kept pounding on the doors of the Department of Health and Human Services (DHHS). I went directly to that CPS worker with frustration like you wouldn’t believe.

And what he told me was, “Well, if you insist that I open a case, I’m going to contact that mother. I’m going to tell her to come back and get her kid, and we’ll keep an eye on it. But if she’s living in Grand Rapids, you’re not going to have any contact. If that child winds up in foster care and placed down in Grand Rapids or Kalamazoo or Chicago or wherever she happens to be, you’re not going to know whether everything is okay or not. So long as the child is safe with you, you should go get guardianship from the court and leave it alone.”

That made me run right straight to the court and file for guardianship. I was thinking that it would give some services. But what I realized was, poof! I screwed myself over. I fell right into this caseworker’s whole pattern—diversion. They had said, “Go get guardianship,” because I already had the kid. They didn’t have to support her. They didn’t have to provide medical or any other kind of services to her or our family.

I went to all the training that DHHS and the national groups provided in my city, and that’s how I learned what trauma was, and what adverse childhood experiences are, and failure to thrive. None of these things were part of my vocabulary; neither were “family court” or “social services.” They just weren’t: We were just your regular family with three kids, working our butts off to keep above water.

This is where my advocacy work began. I stood there and said to DHHS, and later to legislators, “How can you ignore this whole population? How can you not give these families this information? Why aren’t you helping them?”

When you sit down with public officials, suddenly you get these theories: “This grandma never had any control over her own kids; what makes you think that she can do right this time?” The other big one was, “The apple doesn’t fall too far from the tree.” Honest to God, I even heard a legislator say that. What a joke.

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We did and we continue to make accommodations for Nessa. We got her an IEP (Individualized Education Plan) and fought with the schools because they had no trauma training. We had her evaluated at multiple places—Easterseals and DeVos Children’s Hospital in Grand Rapids and many others.

Nessa had some health problems, including massive migraines that we thought were seizures. We tried different medications. The separation anxiety was a nightmare. What I kept asking myself, over and over, was, How can I figure this out? I had this kid, and I was going to save this kid’s life, no matter what I did.

I had been working all this time, but when my husband went on disability for cancer treatment, I stopped. We used our 401(k) to support Nessa, paying the penalty because we couldn’t get services. When Ed lost his job and our insurance was canceled, we applied for benefits—Medicaid and food stamps and things like that. But first we had to spend down our 401(k). This is why most grandparents raising grandchildren also don’t have any retirement funds.

We’ve always been outside the system. This is how it goes without having the support systems intact and having to fight all this way yourself. I’ve had to teach myself, learn myself, beg, steal, and borrow, to try and find what is offered. As much as I disagreed with the legislators’ stereotypes, deep down, I wanted every bit of my own circumstance to be my fault. I had raised Nessa’s mother; somehow, I was responsible. My other two kids would say, “But you have us, and we’re successful. And we have college degrees, and we have kids and homes.”

They said, “It just happens.” But I had long thought that if I were responsible for my daughter’s behavior, I could fix it.

I’d tried everything: Manipulate, lose my cool, send voicemails and messages and whatever else, but I never fixed her. When we got Nessa, my first focus was to fix her situation, but through my own understanding of trauma and mental health, I learned that I couldn’t do that: I couldn’t fix the trauma, but I could certainly help her through it.

This—letting go of taking personal responsibility for everyone—was my aha moment. Now, I try to focus on the fact that I’m a lot stronger than I thought I was. I’m a lot more capable. I’m a lot less fearful. I can take a challenge and hit it head-on. That’s how I take care of myself.