Jessica Graham

@jessica-graham | contributor
Jessica Graham is a mom to three kids, two of whom have special needs. Her book Beautiful Paradox: Musings, Marvelings and Strategies of a Special Needs Parent is a practical guide for living with special needs. You can also find her at In Pursuit of Loud, where she writes about being a genius in the art of everyday living. 
Jessica Graham

Tips for Time Management When You're a Special Needs Parent

Time management experts tell us how to make the most efficient use of our days. They remind us that no matter who we are, we only get 24 hours in a day, 168 hours in a week. These experts differentiate between the time spent doing pleasurable things and the time we spend doing the disagreeable things, noting that time can feel different depending on how we use it. But the one thing they continually fail to discuss is how to handle activities that deplete us for far longer than the time spent doing that activity itself. Last week I spent a painful hour and a half with the insurance company attempting to untangle a denial of coverage. The situation was frustrating not only because of the nature of the phone call, but also because of what the phone call represented. That phone call wasn’t just a one-time, aggravating To Do. It was a reminder that the world often doesn’t understand my child’s needs. Situations like that require consistent and often immediate but unpredictable chunks of my time and attention. Tasks like these, even when performed for those we love – or maybe especially when performed for those we love – can sap our strength and deplete our reserves. Situations like these make incursions into my time and inroads into my brain. How can we prevent unavoidable tasks from sapping us long-term? 1. Allow yourself to recuperate. Whenever athletes do any kind of strenuous exercise, they rest and refuel afterward to give their bodies a chance to recuperate. If they don’t, they risk injury. We similarly risk harm when we don’t give ourselves an opportunity to mentally regroup. Because we frequently can’t defer disagreeable tasks to a time that’s convenient, it can be difficult to work “recuperation” time into our schedules. But giving yourself a break can come in many different forms. Go outside. Eat a snack. Because motion changes emotion, do anything that incorporates movement. Look through a photo album. Light a scented candle. Make a list of the things that refuel you and refer to that list as needed. 2. Reframe your thinking. When you fly, you can choose to view weather delays as a disruption, or you can see them as part and parcel of the traveling experience, albeit the inconvenient part. Insurance headaches are not acts of God (to be sure!) and no one needs to put up with incompetence, but life is full of aggravations. Given that my insurance issue was one of red tape, it’s easy to think, “Wow, there are a number of more productive ways I could have spent that time.” But if I approach it from the perspective that I was dealing with health care for one of my children, then there are certainly far more trivial ways I could have spent that time. 3. Track your time. Tracking your time seems counterintuitive. Why do I want to know the actual number of minutes I spent doing something aggravating? But time tracking can help you see not just the minutia, but the big picture as well. For example, while a good portion of my morning was dedicated to my insurance phone call, when I view the day as a whole, it becomes more of an annoying blip. There was still time for other far more fulfilling and even enjoyable things. 4. Build in buffers. I am not someone with a high tolerance for a lot of activity. Running errands and being “on the go” leaves me exhausted, not energized. Consequently, once we started adding regular doctor’s appointments and therapy sessions to our schedule, I cut down on other activities, including extracurriculars. While the kids had fewer dance and Tae Kwon Do lessons, adding this extra margin helped immensely when we needed to shuffle the schedule, and more importantly, it gave me much-needed breathing room to absorb life at a less frenzied pace. You may like to go full tilt when it comes to activities. The buffer you need may be take-out, a cleaning service, or using a delivery service for your shopping or groceries (like Amazon Prime, Google Express or even your local grocery store’s delivery or pick-up service). Find what works for you and then do it. You may object to outsourcing, given that you’re spending out the wazoo elsewhere. I hear you. I cringe every time I have to pay for parking at the children’s hospital. What kind of a sadist came up with the idea of charging me for medical care and to park in a dimly lit garage to get said medical care? But I can either spend the money on things now or I will pay in the future – at the expense of my health and well-being. 5. Look farther down the road. Some things really do improve with time. Your child’s prognosis may not improve, their condition may deteriorate, and these are hard, hard things. But some things do get easier with time. With time, some things will feel less intimidating, if for no other reason than you’ve done them before. You will become more comfortable doing the uncomfortable. Some things like hospital visits will never be easy, but you’ll only ever have one first hospital visit. You’ll learn where to park and which waiting room has free coffee, and there will be solace in knowing these things. Time, for better or worse, means more experience, more practice and greater perspective. Excerpted from Beautiful Paradox: Musings, Marvelings and Strategies of a Special Needs Parent.

Jessica Graham

What Life in a Special Needs Family Looks Like

There are a lot of misconceptions about what life in a special needs family looks like. Often people tend to overemphasize the difficult parts or downplay the physical and emotional toll that consistent daily stresses can cause. We happen to have two children with “significant” special needs, and here’s what life looks like for us. It looks like a sister and brother racing up and down hills on a walk. It looks like people “helping” to make pot stickers for dinner. It looks like kids being kids, and my husband and I being parents. My family doesn’t have a “normal” day, but I don’t know any family that does. For us, “typical” includes special equipment (like my daughter’s motorized wheelchair and dressing tree or my youngest child’s splint), frequent medical appointments and always trying to adapt and improve how we do things. Some days being a parent is one the hardest things I’ve ever done; some days it’s the greatest gift I’ve ever been given. Usually, it’s the same day. One of my biggest concerns about becoming a mom to children with “extras” was how it would affect our typically developing eldest child (who had a more correctable need). Early on, he helped lay those fears to rest. During the adoption process for our daughter, we showed our son pictures and video of his sister with a limb difference, trying to explain her differences the best we could. Some time later, our son told us that our daughter wouldn’t be able to play golf. We naively assumed he was telling us this because of her limbs and assured him that she would be able to golf, just differently. He insisted repeatedly that she wouldn’t be able to. Finally, we asked him why he felt that way. “Because she’s a girl,” he said matter-of-factly. It was an answer that only our beautiful 3-year-old boy could deliver. Well, that girl has shown him what’s she made of time and time again. And that little boy has shown us what a wonderful big brother he is. Last week was back-to-school week for us, and now that they’re in first and second grade respectively, they’re on the same playground this year. They spent the first two days of recess playing with each other (football, by the way). My rough-and-tumble guy’s guy chose to forgo playing sports with his sweaty, arm pit noise-making friends in lieu of playing with his little sister. And it’s not like he was doing her any favors. They each felt lucky that their sibling had chosen them instead of their other friends. Just hand those kids their diplomas already. Life, of course, is not always like that. We like to joke that there’s often a lot of crying at our house and that sometimes it’s the kids. (Naturally, our youngest who is on the school’s transitional kindergarten/kindergarten playground felt left out when he heard about his sister and brother’s joint playtime.) There is no average day in the life of a special needs family. Each need is unique; just as each family is unique. A child with developmental delays and a child with physical or medical differences each experiences life differently, as do their families. The things that become my normal will never become another family’s normal and vice versa. The first time my husband and I ever went to a  special needs support group , everyone went around the room and listed their children’s needs. Each time a family explained their situation, I thought, “Oh my goodness, that sounds so hard.” In talking to some other families later, it turns out they were thinking the exact same thing about us! If you’re a special needs parent who feels discouraged and overwhelmed, please know that I’ve been there and that this perspective has been years in the making. If you’re a prospective adoptive parent who is considering special needs and are scared and afraid, please know that I’ve been there. To each of you, I would say this: Seek out other families who have been where you are and who are where you want to be. Listen to their stories. Any family that only tells you the hard part is only telling you half the story. Any family that is only telling you the happy part is only telling you half the story. There are no good days or bad days in parenting — there are only days, each one more fabulous and maddening than the last. A version of this post was originally published on  In Pursuit of Loud .

Jessica Graham

Why I Decided to Go to Special Needs Parent Support Groups

I was very resistant to the idea of going to a special needs support group. We felt we had plenty of reasons not to go. We don’t think of ourselves as a special needs family. And we were managing just fine. I thought a special needs support group was somewhere you go because you’re seeking help. Boy, was I wrong. Here’s what I learned from going to a special needs support group, and why I think you, too, should try going at least once. 1. Everyone is just like you. Some days, having a child with a condition that necessitates greater-than-average medical care can feel isolating. You feel like you’re the only one trudging from appointment to appointment, lugging your binders and being hit with off-the-wall medical terms. Guess what — you’re not the only one. Every parent or caregiver had a child with a diagnosis or a child for whom they were struggling to find a diagnosis. These people got it. These people knew what it was like. There is comfort in solidarity. 2. Everyone is also different. People talked about feeding tubes and seizures and caring for nonverbal kids. I couldn’t identify with any of those things. But that was the point. I didn’t have to or need to. Each family has their own “hard.” As we all went around the room giving a short summary of our kids and their needs, we were all likely thinking the same thing: “Oh, I could never manage that.” But all we have to do is work with what’s in front of us. 3. Laughter is the best medicine. Some of the things we laughed at were funny, some were darker. But that laughter with those families was a shared communion and a reminder: No matter how complicated life gets, you can always laugh. 4. Tears heal. When I walked into the room, I noticed coffee, brownies and a box of tissues. One of those things seemed out of place. But even an airline pilot doesn’t travel as much as that box of tissues did. I think it circled the room twice. Sometimes the hurt and the heartache and the fear gets buried down deep. This was a safe place to lay down some of it. 5. Free child care. The local church where I attended special needs group had childcare for children with special needs and their siblings. Need I say more? Jessica’s daughter. Follow this journey on In Pursuit of Living Loud. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.