Tuesday, February 28, 2012
I was at the Blissdom 2012 blogger conference from Thursday till Sunday, being all blissed out and trying hard not to wonder if the kids were eating ice-cream for breakfast, lunch and dinner and wearing the same clothes for three days in a row. (They were and they did.)
Once again, the conference was at the planet known as Gaylord Opryland, in Nashville. I was a community leader for parenting/family/special needs, which meant I got to help people out and lead discussions and generally spread bliss. Blogger conferences, especially this one, typically have a mix of inspirational and informational sessions; often, they're both at once. A few choice tidbits I picked up:
• Be present. Motivational speaker Jon Acuff kicked off the conference; his new book is just out, Quitter: Closing The Gap Between Your Day Job & Your Dream Job. Jon spoke about the time his little girl placed a napkin over his iPhone as he was talking on it. On it she'd written "Daddy pay atenshon!" (As in, pay attention!) Some days, it's easy to get so sucked into work and chores that you forget what matters most: paying atenshon to your family. We all know it, but it's a good reminder to back away from the iPhone and Facebook. And if you have a serious problem tearing yourself away from tech stuff, a tool called LeechBlock will block time-sucky sites for you whenever you program it to. I for sure need to LeechBlock Pinterest.
• You can help end child hunger. ConAgra Foods has a campaign to help the 1 in 5 children in America who don't know where their next meal is coming from. They donated 40,000 meals during the conference. Meanwhile, when you buy foods from participating brands—including Healthy Choice, Hunt's, Orville Redenbacher, Chef Boyardee and Marie Callender's—and enter the code on the back of the product at Child Hunger Ends Here, you can donate one meal.
• Helpful writing tip: It pays to come up with the headline before you write a post; once you have the title nailed down, it can help you focus your post (props to Amy Graff from BabyCenter and The Mommy Files for a stellar presentation). Also, it's best to keep headlines to five to seven words (pay no attention to me).
• Need good music for your videos? At a session given by Diane Cu of White On Rice, a film and lifestyle photographer and filmmaker, she mentioned a few sites for finding free or low-cost music to accompany videos: With Etiquette, Triple Scoop Music, Free Play Music and Vimeo. Check out this beautiful video she and her partner, Todd, made:
Monday, February 27, 2012
Friday, February 24, 2012
Thursday, February 23, 2012
Like many kids, Max's little obsessions come and go. His spaghetti and car wash fascination? So one year ago. His thing for purple, however, shows no signs of letting up although lately he's been saying he likes purple with black. Progress!
Last week, a new phase started. I came home from work to find our babysitter sporting a white piece of paper on her chest with her name painted on it. "What's up with that?" I asked. "Max wanted to do it!" she said. Max had gotten her to write out the name of everyone near and dear to him on a big piece of paper, then they cut all the names out. Together they taped "Mommy" on my chair at the table and "Daddy" on Dave's chair at the table.
Later on, Max decided that he wanted to put "Sabrina" on her backpack. Her response, and I quote: "NOOOOOOOOOOOOOOO!"
"Sabrina, what's the big deal?" I asked.
"That's MY backpack!" she said.
"Honey, it'll still be your backpack, Max just feels like putting 'Sabrina' on it, so would you do that for him?" I asked.
"I'm NOT going to school with that on!" she said.
"No, of course not, we'll take it off later," I promised. And so she let him label her backpack.
This morning, as I was headed out the door to work, Max decided I needed "Mommy" on my chest.
"Max, I can't wear that to work!" I said.
"Eeeeyah!" he answered. ["Yeah!"]
I wasn't going to reason with him. So I left the house wearing "Mommy" on my chest, took the paper off and carefully placed it in my tote, then taped it on again when I walked back in the door at night. Perhaps I should have kept it on at the office, just to show them who's boss. That could work well at meetings, I think: "We're doing it because I'M THE MOM and I said so!"
My label would definitely come in handy should I have an identity crisis. Also, I am headed to the Blissdom blogger conference today and this could be a fabulous thing to wear instead of the name badges they hang out.
Meanwhile, I'm all for this phase. Unlike car washes, it won't cost us anything or require us to grovel with car wash attendants to let us go through a second time. Unlike spaghetti, I don't have to cook or ask waiters at restaurant to chop anything, stirring up all sorts of controversy in the process. I love that it's educational; Max is getting more and more curious about words and spelling.
Labeling stuff is also just plain fun, and I know it because I own one of those battery-operated label makers and I enjoy using it entirely too much. I keep it hidden in the back of a closet ever since Sabrina got her hands on it and mainly used it to print out labels that said "poopie."
What's your child obsessed with lately? Anything in your house need labeling? Because I know a kid who can help.
Wednesday, February 22, 2012
From Melanie Potock, a pediatric speech language pathologist and feeding specialist in Longmont, Colorado who blogs at My Munch Bug
• ...Feel free to video our session to share with your partner, nanny or other caregivers.
• ...Call me if you have any sickness in your home that day. I see so many kids who are medically fragile and it’s helpful for me to know if I am about to enter Strep Throat Territory!
• ...Let me know if you feel you need to change to another therapist. Not every therapist’s style is the right fit for every child, or every family. Therapists understand that as a parent, you are just trying to do what you feel is best.
• ...Celebrate each and every step of progress with me! Therapists have the benefit of watching many, many kids make this journey over the years. We know each step on this path. It’s important for everyone to celebrate even the tiniest accomplishments and not become overly focused on the final destination. We will get there, one step at a time!
• ...Hesitate to tell me if you think something that I have suggested just isn’t working for your child or your family. I promise to listen, adjust the therapy and not take it personally.
• ...Clean up the house just because I am coming over to do therapy. I want my visits to the home to make your family’s life easier. Believe me, I’m used to seeing dirty dishes on the counter.
• ...Lose the therapy tools I loaned to you. I’m happy to loan them, but I can’t afford to replace them. And if your toddler accidently spilled grape juice on the book I loaned you on speech and language development, please let me know before I loan it out to another family.
• ...Be upset with me when I need to cancel at the last minute due to bad roads. As a therapist who drives from home to home and covers many miles in a day, road conditions vary and I often get caught in bad weather while it is still nice in your neck of the woods.
• ...Ask me to change your child’s diaper or take them to the potty, unless it is a part of your child’s therapy plan.
From Stacy M. Menz, a pediatric physical therapist in the greater San Francisco Bay area who blogs at Starfish Therapies
• Do encourage collaboration between your therapists and other team members (including caregivers). Often the other team members will be working on things that are easy for another therapist to carry over, which allows extra skill practice to be 'snuck' in. (An example: if a speech therapist is working on the child producing sounds such as m,b,p then a PT can have the child practice those sounds if they are playing with toys that have things like cows or sheep).
• Don't make exercises stuff you have to "fit into" your day—incorporate the exercises and 'homework' into your routine as much as possible so it is part of the day. Often your therapist will have ideas on how to do them; perhaps they can done when you change a child's clothes or diapers. Just be clear on what you can handle as a family so that your therapist can pass on the top priority for you to practice.
• Do give your child time to be a kid and have free time, or take a short therapy vacation. Letting them have time to play and interact with the world can often provide their bodies a valuable opportunity to practice, process and integrate all the new skills they are learning.
From Rona Silverstein, an occupational therapist in the northwest suburbs of Chicago
• ...Communicate with the therapist and participate in the sessions if appropriate.
• ...Ask questions of the therapist—we love to discuss and share our perspectives.
• ...Provide us with your perspective on what is going on. You are an expert as you know your child way more than we do.
• ...Forget the session is about your child. Keep the focus on him, offering encouragement and participating in problem solving.
• ...Ask questions at the end of the session. We may feel rushed and in a time pinch.
• ...Think we know all the answers. We don't! We do have a unique perspective though, so don't hesitate to ask us what we think.
From Becca Jarzynski, a pediatric speech-language pathologist in Eau Claire, Wisconsin who blogs at Child Talk
• Do ask questions! Sometimes we therapists get in our own heads and forget to explain things well. That’s our fault, not yours! Never feel like a question is to simple or to silly. It’s your right as a parent to understand what we are talking about. Make us slow down. Ask as many questions as you want and don’t stop asking until you have gotten the answers you deserve.
• Don't hold back on sharing with us. A good therapist will not only get to know your child, but you and your family as well. Tell us what you love to do each day. Tell us the struggles you face. Tell us the successes you’ve had. The more we know, the more we can help you integrate what is best for child development into what is best for your family.
• Do take our suggestions with a grain of salt. We are probably going to give you too much to do—we're therapists, it’s what we do. Although we have the best of intentions, sometimes we worry too much about the child and too little about the family. Give yourself permission to ignore us sometimes. Tell us if what we are asking you to do isn’t reasonable. Remember that no matter how important therapy is (and it is important), it must be balanced with maintaining a healthy family, full of love. Trust yourself to find that balance.
From Joleen R. Fernald, a pediatric speech-language pathologist in Dover, New Hampshire
• ...Be punctual to your appointments. I know you have so much going on in your life, but we have lots to get done in a short period of time!
• ...Tell me when homework is too much. I recall early in my career when I would remind families to read at least 30 minutes per day with their child. Then I had children of my own. I suggest 5 to 10 minutes now!
• ...Try out any exercises with me present so we can make sure you feel comfortable doing them.
• ...Understand that you, the parent, are far more knowledgeable about your child than I do; however, also understand that I am the expert in speech and language and together we make a wicked awesome team!
• ...Act as if you understand what I am explaining when you really do not. I don't mind explaining; please ask.
• ...Respond for your child. Let him work it out for himself so he can learn.
• ...Tell me you practiced your homework every day when in reality, you practiced on the way up the stairs to see me.
• ...Forget to update insurance information or paperwork. This can be very expensive for you and a pain in the neck for me. I'd rather spend my time working with you and your child than chasing down insurance reimbursement.
From Karen Head and Meghan Graham, speech-language pathologists, and Jill Perry, a pediatric occupational therapist; based in Boston, they're the founders of All 4 My Child, a site about collaborative tools and technologies
• Do explain your family culture and routines to your therapist.
• Don't feel that you need to be a therapist—"mom" is the most important role you play.
• Do share those special little moments of progress (or just adorableness) with your therapist. We treasure them.
Monday, February 20, 2012
Years ago, Max's pediatric neurologist told us to expose him to as many kinds of new experiences as possible. "It'll help grow his brain" is how he put it. In other words, getting Max to try different stuff would give his mind a workout, pique curiosity, encourage learning and focus and generally do his brain good. This is true of any child, of course, but especially true of a child with brain damage.
We got Max toys and books galore to explore. But for the longest time, he couldn't stand new places. They'd freak him out, to put it mildly. He'd screech, cry, shake his head as if we were torturing him (and by the looks we got from other parents, they for sure thought we were).
Max liked comfort places, the ones he'd been to again and again—mostly relatives' homes and Cold Stone Creamery (good for his belly, not so much his brain). And so, we got into the habit of repeatedly visiting local places that offered varied stimulation: zoos, children's museums and playspaces. We got memberships and season passes and we went and went and went.
Max has thrived. Because he's so comfortable at these places he's into everything, including new exhibits and activities. Today, we went to a zoo he loves and he didn't just walk in, he ran in.
What's particularly great about going to these comfort places is the surge of confidence Max gets. After the zoo, we tried a new restaurant—not usually something Max likes, but he was all for it. Then we had ice-cream at a new place. And for the first time, Max asked to have his chocolate ice-cream in a cone.
Friday, February 17, 2012
The waiting room has one of those wooden bead mazes. When Max was little, he wasn't able to manipulate the beads. He'd try so hard but the cerebral palsy had done a number on his fingers and he couldn't grasp any of them. I dreaded that waiting room because all the other kids would be flinging beads around that maze, but not Max. Now when we're there and Max pinches beads between his two fingers and zooms them around, I smile like a loon. It's one of those see-how-far-he's-come moments.
When you're parent to a kid with special needs, you can have a very different perspective on the most mundane events, places and activities. So many of them are filled with memories, bad and good. The ghosts of the special needs past constantly meet the miracles of the present.
I pass the house in our neighborhood where in summer early evenings our babysitter would wait with six-month-old Max for me when I walked home from the train and I'd break into a run when I saw them and bend down to look at Max in his stroller and he'd smile but he wasn't able to make eye contact because the stroke he'd had at birth had impaired the development of his vision and I'd desperately say "Max! Max! MAX!" but he still wouldn't look at me and my heart would sink because I had a baby who couldn't even look his mother in the eye amongst his many other delays—and I am very grateful that he is able to see me now.
I go to the restaurant where Baby Max couldn't sit up in a highchair because his muscles were weak and Dave held him as I fed him—and I am very grateful for how strong Max's body has grown.
I drive past the hospital where Max stayed for three nights when, at 15 months old, he had a grand mal seizure so bad that the paramedics couldn't stop it and I rode to the hospital in the ambulance with Max violently shaking and finally a doctor at the hospital got it under control—and I am very grateful that the medication has kept the seizures at bay.
I walk by the building in town where Max went to Music Together and he'd sit in my lap as the other toddlers jumped and danced and ran around the room—and I am very grateful for how well Max walks now.
Thursday, February 16, 2012
UPDATE: The winner of the iPad, chosen via random.org, is Jen Wen. I hope to have at least one other iPad to give away this year; every one of your kids deserves one.
Wednesday, February 15, 2012
It is really awesome seeing your kids enjoy stuff that you enjoyed as a kid. Like me back then, Max also adores spin art (we have the Crayola Color Twister), Play-Doh (purple only, of course), long baths, giggling, being pushed on the swing for ridiculously long periods of time and as much ice-cream as his belly can hold (although I liked vanilla and he is all chocolate, all the time). Like me back then, Sabrina is into dance class (I was ballet, she's hip-hop), tennis, reading, wearing boy clothes, writing stories, making jewelry from kits and eating anything and everything carbs. She just started loving the Ramona series by Beverly Cleary, my childhood fave.
I passed along my wanderlust gene to both kids, who love to go on planes and stay in hotel rooms. I also gave them the gene that makes you want to jump up and down like crazy on your bed when your mom asks you to go to sleep. I dunno, maybe that's ALL kids.
A few weeks ago, I was at Sabrina's gym and I saw a little girl gleefully do a cartwheel. I wished Max could experience the joys of doing cartwheels. And then I caught myself: I could never do a cartwheel as a kid. And it sure didn't stop me from having a great childhood.
Tuesday, February 14, 2012
Monday, February 13, 2012
That's a 10-year-old talking who stopped by the other day; she lives in our neighborhood and came over to say hi to the kids. I'd told her that Max was in the family room rocking out to "You Might Think I'm Crazy" from Cars 2, as he loves to do.
"Yes, he can dance and he's got moves!" I answered, and brought her in so she could see for herself (and Max could show off, which he did).
It's the sort of thing that happens regularly, a kid or adult truly surprised by Max's abilities or even his personality.
"Oh, wow, he can read words?"
"It's so cool he has a sense of humor!"
"That's great that he can tell you what he wants for lunch!"
At times, it's painfully clear just how low people's expectations are of Max—especially when it's from people who know him, less so from people who don't. Last night, I went to a book club meeting. It was my second time there, and I mentioned that Max has cerebral palsy. Another mom said she knew a kid with CP who had been involved in a bike training program and offered to get me info. I said yes, because I thought maybe the program had other sports training, and then I mentioned that Max had a bike he rides really well. "Oh! So he can already ride a bike! That's incredible!" she said, and I heard the amazement in her voice and I understood. Before I had a child with cerebral palsy, I didn't know about the wide range of abilities you can have with CP.
This is one reason I have an over-the-top reaction when parents of kids with special needs refer to them as not "normal." Max and children like him have enough to overcome in this world. As parents, I think we should talk our kids up as best we can. That's not to say we shouldn't mourn or despair; we all do, it's part of the road we travel. But our kids deserve for us to be their best spokespeople—their spokesmoms and spokesdads, you could say. And so I am there to gush about Max's growing reading skills, his mastery of the iPad, his amazing memory and, oh yes, his dance moves. To help people see what he can do, rather than what he can't.
I do this because I'm his mom, of course, but also because Max deserves it. He's amazing not only because he is a kid who has beaten odds or surpassed expectations, but because he's got awesome abilities in his own right—just like any kid.
Friday, February 10, 2012
When my friend Betsy's son Tom was a baby and not meeting any developmental milestones, she said she isolated herself from the mommy crowd. “I couldn't deal with people talking about their kids’ advancements and playgroups because I wasn't having the same experience as everyone else,” she told me. So, she stepped back and did her own thing. And by not exposing herself to reminders of all the stuff he couldn’t do, she said she was able to focus and celebrate more on what he could. “I remember when Tom was over two and not walking yet, my mom said, ‘Someday we’ll be glad we got extra time to snuggle with him, because eventually he won’t want to.’ And you know what? I am glad I got extra time to snuggle with him, because now he is 11 and five feet tall and doesn’t want to snuggle.”
Among the bad, there is good. Maybe you need to hold a microscope over life to find it some days but it is there. Even if you have to put it on mega-magnification to find it! Like Betsy said, “One day I was reading a book about these women struggling in Afghanistan, and I said to my friend, ‘At least we live in America. When we flip the light switch, the lights go on. Every time.’”
For me, as I work through my own personal struggle, that’s where happy is, in focusing on the small good things. Easier said than done? Absolutely. But when you find something you can feel truly happy about, it’s worth all the effort to try.
Update: The winners are KarenP, Clara and Melissa. Enjoy the book, may it bring you extra bliss.