Soon after the birth of her twins, Avery and Bennett, Jennifer Graf Groneberg learned that Avery had Down syndrome. A writer, editor and mother to preschool-aged son Carter as well as the twins, Groneberg began writing about what it was like to mother a child with Down syndrome on her blog Pinwheels. She recently penned the memoir Road Map to Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome, in which she shares her experiences during those first few years.
Graf Groneberg lives on a ranch in Montana with her husband, rancher and writer Tom Groneberg, author of One Good Horse. Her work has appeared in various anthologies and publications, including mamazine, Parenting and Literary Mama. She is also the editor of the anthology My Heart’s First Steps. In addition to writing, she home schools all three boys — the twins are now 6 and Carter is 11 — and has become a resource and advocate for families with special needs children. In an interview with freelance writer Sarah Werthan Buttenweiser, Graf Groneberg talks about how and why she wrote her story, what it’s like to move from Internet popularity to print publishing and how she juggles motherhood, homeschooling and her creative life.
Sarah Werthan Buttenweiser: What was it like writing Road Map to Holland?
Jennifer Graf Groneberg: It was really hard to write the book, but I felt very compelled to write it. You know, with nonfiction, you’re clear about the importance of telling the truth, and I had to tell the truth, which meant I had to relive those experiences all over again. It was especially hard to write the beginning — exhausting and draining. By the end, though, writing actually felt joyful. The book was really something I wrote for myself. I was freed. I could move on.
SWB: You say writing the book freed you. How so?
JGG: Before I wrote it all down, I’d carried the experiences within me, almost as if they were snapshots of things that happened that I didn’t want to ever, ever forget. As if I could! Then, after writing it all down, I was able to release it. The snapshots are safely stored away, in the pages of the book, which I return to, sometimes, but not often. Our lives are so much in the present now, which is just the way I want.
SWB: What kept you writing through the tough spots?
JGG: While I was writing, I had a photo of a woman in a rocking chair holding a baby in a silver frame on my desk. The picture was such that it could have been any woman and it could have been any baby. Every time I looked at the book, in my mind, I was writing for that woman and the baby in her arms had Down syndrome. I had to write it before I couldn’t write it any longer and I had to write it before the things I had to say would no longer matter to her, before it was too late for her. I knew that there were real women out there who might find what I had to say mattered for them.
SWB: What were the things you wrote about that you feel really resonate with other parents of special needs children?
JGG: I admitted to that feeling at first of being so overwhelmed and disheartened. What I feel at the start isn’t very pretty. Although I’m far from the only one to experience those emotions, putting it out there flew in the face of stereotypes about special needs moms. Before I had Avery, I assumed that moms who had kids with special needs were: extremely patient, always loving, wise, intuitive, calm. I also thought they were not me. What I’ve come to find is that, while moms of kids with special needs are some of my favorite people, we’re all just that — people. Even with all our differing styles, in parenting and living and working as advocates for our kids, we do share one thing — a fierce love for our kids.
I did come around and begin to see myself as a special needs mom, but I worried about alienating people by giving honest voice to my doubts and my worries. Now, I’m glad I could write about it and I’ve been told over and over how much it’s helped other women to know they aren’t alone in these feelings.
SWB: Your online presence was pretty strong before your book came out. Did you use the Internet to promote the book? In what other ways did you promote it?
JGG: We did a little quiet online promotion where I was interviewed for different sites and blogs, like MotherTalk, mamazine and Motherwords. That was my virtual tour. Then there was word-of-mouth promotion, as well as the two conferences I went to over the summer: BlogHer and the National Down Syndrome Congress, where my book received its National Media Award. That was really amazing for me, because those are my people. Emily Perl Kingsley, a longtime advocate for Down syndrome and former writer for Sesame Street, was there and her work has meant so much to me. Her essay about having a child with Down syndrome was entitled Welcome to Holland, so she really is a guide for me, and countless others. I was so glad to write something my community of fellow travelers embraced.
SWB: How are readers responding to the book?
JGG: When the book first came out, I heard from readers in a trickle — often, just a person a day. But the thing about the Internet is how it connects you to others so easily. It also means that writers are no longer inaccessible. We are really a keystroke away. That suited me; I wanted to be completely accessible. I started to hear from other moms, often moms with special needs kids. Their outreach felt shy, like how the first people at a party can be a little tentative. The sentences that most move me begin like this: “I thought I was so alone….” For a lot of women, I was the first peer they reached out to about having a child with special needs. And that’s great. But I also try, whenever I can, to encourage people to take the next step and find organizations, or if I know people local to them, I try to connect them. I see myself as a stepping stone to securing real-world support and friendship.
SWB: How much support is out there for special needs parents?
JGG: The Internet is truly good for all of us. I’m very hopeful that it will continue to grow in that way, because there are so many resources available and so many voices being heard now. Even in the last three years there have been tremendous strides. The number of blogs on the subject of special needs is astonishing, really, and I have a very long blogroll to help people find resources and one another. I’m also really excited by a Web site called Bloom, which has so many wonderful resources and ideas for parents whose kids have disabilities.
Over the past few years, even since Avery was born, there has been so much more writing on the topic of special needs parenting, like Vicki Forman’s Literary Mama column Special Needs Mama and her book, This Lovely Life, which chronicles her early experiences with her son, Evan, who was born very prematurely. She and co-editor Kyra Anderson have just put out an anthology about raising children with autism entitled Gravity Pulls You In. With more voices, there’s more support and finding appropriate resources becomes easier.
The most underrepresented group is families with special needs adult children. Cute kids, including kids with special needs, get attention, because who doesn’t love cute kids? Any teenager is harder. Special needs adults practically become invisible, which is something that scares me. I can count nearly twenty blogs by parents with special needs children and maybe three discussing families with adult children and special needs. I hope that my generation of parents can create more options for our kids as adults than currently exist.
SWB: How did you decide to homeschool your children?
JGG: My oldest son, Carter, was basically preschool age when the twins were born and doctors told us keeping the premature babies away from major germ pools — that’d sum up school — was a good idea, so that’s how we started. Then, in Montana, kindergarten is optional, which gave us another year without really making any big decisions. In first grade, you have to declare your intentions, but homeschooling was working for us and it seemed like it would best serve Avery, so on we went. We have a little schoolhouse set up in the garage — we really do go to school.
I am awed by the work teachers do. I have three pupils I’ve known all of their lives but teachers have so many more than three students, whom they haven’t known for very long at all. For us, homeschooling is really fun and really challenging and a one hundred percent family commitment. My husband Tom is a co-teacher, but I am the one to coordinate everything: the piano teacher, the art teacher and the curriculum materials. There’s lots of delegating and lots of finding help. We go about six hours a day, four days a week, basically year round.
SWB: How did you manage to write the book while homeschooling your boys?
JGG: My first book, the anthology, was compiled during nap times and Sundays, when my husband Tom watched Carter (who was our only child, at the time). I think of that book as my “month of Sundays” book.
With Road Map to Holland, Tom was my biggest supporter, and enabler, if you will. When I was working on the bulk of the book, which took about 50 weeks, I wrote on Tuesdays and Thursdays. We had converted part of our garage to a little office, and I’d go down the hill to the garage/office in the dark of the morning, before the kids were even awake. I’d work very long hours, into the night. On those two days each week, I was completely gone from family life, and I missed it terribly. Even knowing the kids were with Tom, who was not “babysitting” but on fatherhood duty, I still felt very torn. But that was what seemed to work best for our family, at the time.
And writing, now, is different again. The kids are very busy, and I’m busy with them. It feels like anything that’s left for writing is the crumbs of the day. I told a friend it’s like trying to build a loaf of bread out of crumbs, but during this time in our lives, it’s what’s available.
I think that’s the challenge for every mama writer: to make use of what’s available, no matter if it’s a little, or a lot. To just keep writing.
SWB: Describe a typical day with Avery.
JGG: These days, Avery is the first to wake up, at about 7, and he climbs down from his top bunk on the bunk bed, gets a book and sits on the couch. Always, on the couch with a book! After breakfast, we work on school. For Avery, the biggest challenge is speech. He also does kindergarten workbooks designed to introduce letters, numbers, and critical thinking. We do this until lunchtime, when Avery bolts out the door to check on the chickens. He loves the chickens, and getting the eggs, and he’s especially good at catching them. I don’t know how he does it. He pets them and fusses over them. Sometimes, in nice weather, he goes outside and plays harmonica for them.
Avery is a great friend to a border collie on the ranch named Gus. Gus comes to the back door and waits for Avery to be done with school so Avery can go outside and play fetch. Gus waits and waits, and then Avery bursts out the door. The pair are a perfect match. They can play stick together ALL DAY.
Afternoon ends (as it must!) and I round up all three boys and we begin the early evening routine, which involves cooking dinner and chores (laundry, table setting, etc.). Avery is particularly good at emptying the dishwasher; he’s also very good at sorting the laundry into which things belong to each person. He loves cooking, too, particularly the tasting part. We eat, then read more, or watch a show, and then we’re all in bed pretty early. Lately, Bennett has been sneaking up into Avery’s top bunk and the two of them look at books with flashlights under the covers. I turn a benevolent, neglectful eye! Sometimes Bennett falls asleep with Avery. It’s so sweet, and I know they won’t be little like this for too much longer.
SWB: What kind of special needs support does Avery have now?
JGG: Well, we “graduated” from physical therapy and now I just try to make sure Avery has enough physical activity, which doesn’t seem to be a problem with all his outdoor time. He had his last heart checkup in the fall — he did require heart surgery last year, and, fortunately, all went very well. We lived a year in Big Timber, Montana, while Tom was doing research for a book and there wasn’t as much of a change in his speech as I’d hoped might happen. Then we decided that, instead of heading back into speech therapy right away, we’d work on teaching him to read, because sometimes kids with Down syndrome can learn to read and this helps to improve their speech. So, while I never expected to push reading, that’s what we did. He’s still working on it and can sight-read words that are accompanied by pictures but he’s not yet what I would call a reader.
Now we’re back to really working on speech, which might always be a challenge for him. We travel an hour each way once a week to work with Molly (the same speech therapist whom I wrote about in my book). She does hour- to hour-and-a-half-long sessions with him individually. Molly asks him to repeat difficult combinations to strengthen his mouth muscles, like boo/bow, me/my, bow/bye. It reminds me of singers doing vocal exercises. The process of figuring out how best to help him progress sometimes seems like swinging on a rope through the jungle; when you reach the end of one rope, you have to swing onto another.
SWB: What are you working on now?
JGG: I’m working on shorter pieces. And I’m interested in fiction these days, which kind of surprised me. I do prefer longer stories, and I think I’ll try a novel. I know that I need to have a creative life. It’s a challenge for mothers to have creative lives, but for me, it’s essential.
SWB: What is the one thing you have discovered as a parent to a special needs child that you hope to communicate with others?
JGG: It is to look with different eyes. I struggled hard to see Avery as a person first. Once I could see it with Avery, then my heart opened.