Meet: Susan D.
08/01/2013 12:04 AM
08/06/2013 3:06 PM
Susan D. of Chapel Hill is spending most of the summer – nearly every minute – with her 9-year-old son. They don't have many other options. There aren't a lot of camps or other traditional summer activities equipped to handle kids like Milo, who is bipolar. So Susan, who left her full-time job to focus on caring for Milo, decided to chronicle her "adventures" with Milo in a blog called "My Summer with Milo." So far she has talked about about the unwritten code of conduct for parents in the waiting rooms of pediatric psychologists, good days and bad days (and how they can be the very same day) and her efforts to balance the very different needs of her high achieving 13-year-old daughter.
The posts can be heartbreaking, but Susan's love for family shines through, and her wit and plainspoken storytelling make her story unfold like a conversation with a friend over coffee. At the end of each post, you'll want to be the one who picks up the tab.
Q. Tell us a little about yourself, and about your family.
A. My daughter is 13. She's a member of the World Champion Bouncing Bulldogs Jump Rope team. She's a tremendously gifted athlete and has traveled around the world for her sport. She's a highly competitive person, very tough and demanding, but sweet too with a lively sense of humor. She's had a hard time adjusting to life with her younger brother, Milo. He's 9 1/2 and has been diagnosed with bipolar disorder. It's been a long journey for us as a family, figuring out that something was wrong and how to treat it. When someone in your immediate family is mentally ill, it takes a toll on everyone. It's financially expensive but it's also emotionally costly, requiring everyone to spend their reserves on the neediest member. As a foursome we do our best to enjoy life, but it's stressful to keep everyone happy and healthy.
Q. Your blog "My Summer with Milo" focuses on "adventures with my bipolar son." Why did you decide to make these adventures public?
A. I spent 20 years in public radio as an editor and producer. I've published a collection of poetry ("Gathering Sound") and several essays in anthologies. I'm a storyteller by nature and by training. When I left my job to better advocate for Milo I had to reinvent my identity. Since summer is the hardest time for Milo, I decided to write my way through it. It keeps me sane -- gives me a goal and a focus beyond him every day. And, if it helps someone else going through something like this, all the better.
Q. You write very frankly about some really painful stuff. Is it hard to write? Or is it therapeutic for you?
A. Writing is hard. Therapeutic isn't quite the word. I have an actual therapist. And I meditate and walk in the woods for therapy. But writing is a way of thinking for me, so I do use it to organize and clarify my thoughts about mothering Milo. A mentally ill child is a freaky thing, it's just about the freakiest thing in the world. I need to get out in front of the freakyness and say, yeah, my kid is crazy, I know, it's hard and weird and also funny and wild and worthwhile, so try not to be so afraid or awkward around me and/or him.
Q. What kind of responses have you gotten to your posts? Are most of them from people you know, or from strangers?
A. I hear from friends and family saying how glad they are to know what our life is like, and how moved they are by the blog. I am most moved when I hear from writers who are attracted to it for the writing. But also when I hear from strangers who are encouraged by it. I've heard from bipolar grownups who identify with Milo's behavior and want me to know that they made it through. I am so grateful to those people; they inspire me to keep going.
Q. Speaking of strangers, a lot of the "adventures" you describe happen while you're in public. What do you wish people knew about you and your son (and other kids who are bipolar) as they observe -- or read about -- what's going on?
A. The thing about mentally ill kids is that they can seem like horrible little monsters, just awful (a--holes) because they look "normal." It's hard to spot their illness as illness. I wish I could put Milo in a shirt that says, "I have bipolar, what's your problem?" But that would make everyone else uncomfortable. He would likely find it hilarious. Some people ask me if I'm okay or if they can help, and I am okay and no they can't help, but I appreciate the gesture. The people who look at me like I've raised a serial killer can go to hell. I honestly don't care about them (anymore). I do, however, panic when the police approach me as if I'm abducting or abusing my child. But the police too have been compassionate. But to actually answer your question: what I want people to remember about mentally ill kids is that they are in a tremendous amount of pain and that no matter how much pain they are causing you, it's much, much worse to be them.
Q. What kind of support have you found, if any, for yourself, as a parent of a bipolar child? And is there much out there locally in terms of supportive environments for Milo?
A. My friends have been wildly supportive. There are a million kids suffering in various ways and everyone knows a kid like that and their parents, so in general people have been wonderful. I don't need support beyond my friends, I need relief. And that is hard to come by. Milo has an IEP, which is great. I have found his teachers and support staff to be terrific. The administration has lagged behind. They still want to punish him for behaviors beyond his control. Summer and camp have been nearly impossible. He had a successful time at ID Tech camp at UNC this summer because I shadowed him. The people there were lovely, compassionate and thoughtful, but I was tethered to his counselor by a walkie-talkie the entire time. Also, that camp is incredibly expensive. This summer he is also trying a 10-day wilderness course in western N.C. for emotionally challenged kids. That too is a fortune. Luckily for Milo, his tuition is a gift from a family friend. But beyond those two camps I have not found anything that works. If he were autistic I'd have more choices. Or physically challenged or learning disabled. Sometimes camp directors say they are up for the challenge of Milo, but they aren't. Then he gets kicked out, feels like a failure and the whole things brings us way down. So the summer is often me and him at the pool.
Q. Do you have any advice for parents who might be dealing with a brand new diagnosis of their child?
A. Strangely, no. Each child is different and each parent is different. I think the most important thing for me has been acceptance. Accepting the relentlessness of it, that it is chronic and possibly forever, and that you have to adapt to this new normal. YOU HAVE TO. Okay, so, I guess that's my advice: accept, love, repeat.
Q. Do you plan to keep the blog going after summer ends, do you think?
A. Sure, if people want to keep reading it.
Q. What's your favorite thing to do with the whole family in the Triangle?
A. I love to go to Saxapahaw. I love the music on Saturday nights in the summer, the low tech kids activities, and the farmer's market and the food at the General Store and the Eddy. I love the welcoming vibe at Cup 22, the coffee shop, and in the Haw River Ballroom. It's also a great place to hike and paddle.
Q. What's your favorite thing around here to do when you get a few hours to yourself?
A. If the weather is cooperative, I will walk in the woods. There are many green trails in Chapel Hill. I also love Eno River State Park and Umstead State Park for hiking. If the weather is nasty I'm a glutton for a pedicure. But, given that my reputation is at stake I should also add something cultural, right? I will always wander through the Nasher Museum happily or hang out at Flyleaf Books in Chapel Hill.
Q. What's the best advice someone has given you about being a mom?
A. Forgive yourself.
Q. What's your least favorite part and most favorite part of being a mother?
A. My least favorite part is not knowing if Milo will grow up to use his powers for good or for evil. My most favorite part is hearing my daughter say to me exactly what I said to my mother when I was a teenager. That whole circle of life cliche, it gets me every time.
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