OK, I never ask anything of you guys (other than the occasional request to babysit or send chocolate or vote for me, which you still can 'cause Parents Connect extended the voting till July 6), but I'm hoping a bunch of you will be willing to take this brief, anonymous survey. I'm considering joining an ad network sponsored by Hopeful Parents, a site I contribute to for parents of kids with special needs, and they need to make sure there are people other than my husband/mom/friends reading this thing.
This is all part of my master plan to retire young/run for President/achieve world domination/buy Max a purple house/all of the above.
This guest post is from the wonderful Janis over at Sneak Peek At Me, mom to Austin. He has a rare genetic disorder, Branchiootorenal Syndrome (BOR), that affects 1 in 40,000 births. Janis is a single parent, a real champion for her kid and an official Nice Person. I think you'll be moved by what she has to say:
If there was one thing I was absolutely not prepared for in this crazy thing called parenthood, it was this feeling that I sometimes have and desperately want to shake.
Envy.
Now I am sure some people might look at my son's medical situation and think well that's natural, you know... to be a little envious of other new moms and their healthy babies as they walk out of the hospital and embrace their bright, shiny future together. And I agree, when we left the hospital there was that slight pang. In most cases, they were coupled and I wasn't. Their baby was healthy and mine wasn't. The comparisons were inevitable.
In the early days there was an constant internal struggle to for me to accept this life. I worried about things that may seem familiar to you. I lamented, "why my baby? Why did God choose me for this path?" Blah, blah, blah...
I tried very hard to just work right around it and for the most part I did. But eventually I stopped visiting a forum that I had been involved with during my entire pregnancy. While everyone seemed to be accepting of my situation and made loving remarks, it just became too much. As time went on the comparisons between their babies and mine were staring at me as if in BOLDFACE.
I think I did an awesome job moving on from that experience. Soon enough I found forums for moms like me. I found forums for tube feeders, neck breathers and children with craniofacial differences. Ah, my safe place. At first I was the newbie mom with more questions than answers. But all too soon I became a Pro.
It's amazing how many new moms come on board looking for answers to the same questions I had only a few short years ago. I was proud to have the answers and help people. It became "my thing." Then one day I realized that over the past two years I had watched many of these moms come and go.
Now they are the moms I am envious of. Yeah I know crazy, huh? It's not the typical moms anymore, it's the former Special Needs moms.
Yeah, you!
I am a mature, educated woman. I actually consider myself an excellent advocate for my son, you know I blog for awareness and all that jazz. I work hard to promote acceptance for those with special needs among my typical peers. Yadda, yadda, yadda... So I talk a really good talk. But Lord, help me...the truth is in this area, I am weak.
For a while there I had to cut back my visits to my "safe places" because I could not handle it anymore. Every time I read about another child getting their tracheostomy or feeding tube removed, I got sad. You know obviously I want to be happy for my friends and their children, but those feelings of envy crept up, right into my safe place.
Only difference this time is I was mumbling to myself, "Why NOT my baby?"
When I took a step back I realized how much I can learn from them and their experiences. They are now the Pros and I am willing to be the newbie once again. This will always be my safe place and you will always be my friends.
Over the years, I've done a few posts on helpful stuff for kids with special needs, including this one and this one. Thought I'd share a few more goodies!
Jigglers (above): These vibrating toys encourage kids to hold things and also decrease oral sensitivity. They are also really cute.
TheraTogs: A body-suit like garment (above) kids wear that can help improve trunk control and alignment, among other things.
Benik Wrist Supports: They're helpful for isolating Max's thumb (he tends to hold them inward), enabling him to better grasp things. Your OT—through Early Intervention or at school—can help with sizing.
Dycem: A tacky material that prevents stuff from sliding around. We use some beneath Max's bowl, to enable him to feed himself, and for his iPad. Check and see if the therapist or school have any; I've asked his speech therapist to spare a square (in the immortal words of Elaine from Seinfeld).
Kid Companions: Cute little heart and circle pendants on strings that kids can chew on.
Last, I recently found out that Target and Search Institute (a nonprofit that provides resources to promote healthy kids) have partnered to give parents a series of tips and activities for keeping kids brains and bodies active all summer long. I loved the tips, which include ones like head outside for bedtime stories and read to kids under the stars with a blanket, a flashlight and a favorite book, and make nature-inspired bookmarks. You can read the tips on Target's Facebook page under the "Play & Learn" tab, they will be posting new ones each week through July.
I recently attended a Stop & Shop event held at the beautiful Aquagrill in New York City, the kind of place that makes you think wow, I want to own a restaurant, why don't I own a restaurant? One of these days people are going to discover that I consider takeout (for the kids) and Lean Cuisines (for us) "making dinner" and quit inviting me to these things, but it sure is inspiring to see other people cooking. Consumer Advisor Andrea Astrachan told us about Stop & Shop's policy of buying only local produce as chef/owner Jeremy Marshall whipped up gnocchi with President Feta Cheese and and a Sorrento Ricotta Cheese Sorbet. Then they handed out recipe cards and these little cones floored me, which shows you my level of cooking sophistication.
They're made with ricotta cheese so they're a healthy dessert for kids, only they won't know it and sure, maybe someday they will require therapy for that but for now, if you're looking to get healthy foods into your kids in whatever way possible, they are genius.
I leave you with the recipe, as a parting gift, because we are off to a beach vacation for the week. But I am not abandoning you completely, I have a few great guest bloggers lined up and Justin Bieber might stop by here, too, you never know, or maybe President Obama or someone like that.
Enjoy!
Sorrento Ice Cream Cone Cannolis
Ingredients: 15. oz. container Sorrento Velvety Smooth Ricotta Cheese 1/2 cup powdered sugar 1/2 tsp. vanilla extract 1/4 tsp. grated orange rind 1/4 cup mini chocolate chips 8-10 sugar ice cream cone Multi-colored sprinkles
What to do: Using a wooden spoon, mix ricotta, sugar, vanilla and orange rind until smooth. Add chips and stir until evenly blended. Cover and refrigerate for 1 hour. Spoon mixture into ice cream cones. Add sprinkles and serve. If the kids say, "These don't taste like ice-cream" or wrinkle up their noses you can say "I don't know what you mean," thereby guaranteeing they will need therapy later in life, but at least their bones will be full of calcium.
So, this is my last blogger thank-you post in the series this week sponsored by P&G's Thank You, Mom program. If you're expecting this to be funny because it's about Jenny from The Bloggess, you are going to be sorely disappointed. I am not going there since I cannot possibly hold a candle to her. I have decided that this post is going to be serious and earnest and full of clichés, because then there will be absolutely no comparison to her blog, which is hysterically funny and creative and fresh at all times. Nothing here will even make you smile and if you want to laugh please go read The Bloggess right this second.
Jenny is a woman who possesses a very large sense of humor. She can make anything in the whole, wide world funny: trying to sell a camera on ebay or sending a letter to the King of Germany or finding a mushroom that resembles a boob. Every single one of Jenny's posts makes me laugh out loud, like this: HA HA HA HA HA HA HA HA. No matter what kind of foul or wretched mood I find myself in, I will most surely laugh when I go to her site. Jenny brightens up the darkest days. She can lift you up from that pit of despair and send your spirits soaring. She is the sun, the moon, and the stars.
Thank you from the bottom of my heart, Jenny, for spreading sunshine and good cheer and for keeping your chin up and for always seeing the bright side of things and for tickling people's funny bones because laughter really is the best medicine and he who laughs last, laughs best, and I have run out of clichés. But wait, I just looked up "laughter" on a quotes site and there was an appropriately not-funny quote from someone with a not-funny name, Mort Walker, so I thought I'd add it: "Seven days without laughter makes one weak." But wait, I just looked up who Mort Walker is and he is the guy who created Beetle Bailey, which is a not-funny comic strip so I think I am OK here. Also, I thought I might add a quote from The Talmud I also found on that site, given that it is appropriately sobering: "Beware of too much laughter, for it deadens the mind and produces oblivion."
Jenny, there are no words left in my heart other than keep up the good work and rock on and I hope you have a nice day.
Gravely yours,
Ellen
You can see who else bloggers are thanking at The Motherhood. Given how dull this post was, it might excite you to know that Thank You, Mom has an essay contest and every month they're giving 15 winners $1000, a video camera and a sense of humor. OK, not the sense of humor, you don't really need one, just read The Bloggess. But it's still a cool contest.
Ever notice how many mainstream companies that specialize in kiddie toys and entertainment seem to somehow forget about kids with special needs? At least one of them is taking a step in the right direction. I got an e-mail recently about the Baby Einstein peeps, who are looking to reach out to families with special needs.
When Max was young, these videos mesmerized him—and me, too! They're meant to be used as entertainment (read: not as tools for brain development), and parents and tots are supposed to enjoy them together. When we'd take Max to get hyperbaric oxygen treatment, which involved me or Dave lying with Max in a claustrophobia-inducing glass tube infused with pure oxygen (it's supposed to spark dormant brain cells), we'd watch Baby Einstein videos together. But I'll confess that on occasion I'd park Max in front of a video in his bouncy seat while I showered. Guilty of yet another mom crime!
Now through December 31, the company is offering a free DVD Sampler to parents of kids with special needs that features 20 minutes of clips from three Baby Einstein DVDs and insights from an expert in child development. Visit the Special Children, Special Discoveries site to register for it, and feel free to leave your two cents about what you'd like to see the company doing. My request for them and all media companies: feature more children with special needs in your videos and TV shows.
Kate from the CaringBridge journal Gavin, Brian and Darcy was one of my early readers. I tend to post late at night, and Kate would send e-mails telling me she was waiting up for my posts. I was so flattered. We'd trade advice, musings on life, and secrets that we didn't talk about in real life.
Kate touched me because what she was going through with her first son, Gavin—who, like Max, has cerebral palsy— reminded me of what I'd been through when Max was young. Kate is very like me: curious, feisty, gung-ho to try alternative stuff like hyperbaric oxygen treatment (she set up a special tent in her home and she'd hang there with Gavin). She is also really, really funny—her Facebook updates are killer, and titles of her posts often make me smile ("Hop on the train to crazy town. I'm driving.") She's been through a lot these past few months, and her sense of humor has bounded right back. But she's not afraid to show just how deep despair can get.
Last spring, Kate told me that Duke University was doing stem cell infusions for children with cerebral palsy. We'd looked into stem cell treatments after Max was born—we'd banked his cord blood—but at the time, nobody was doing them for kids. I'd sort of given up on that until I heard from Kate. She'd been to a conference, and had gotten a packet of information that she sent to me. Max got his stem cell infusion last August. We're not sure how and if it's helped Max, but he continues to make good progress—and that's all that matters.
If it weren't for Kate, I probably wouldn't have heard about Duke University's program until it was too late (they were focusing on kids under 6, Max just made the cut-off). If it weren't for Kate, I would feel more alone as the parent of a kid with special needs. If it weren't for Kate, my life would be less funny.
Thank you, oh wonderful Kate. Max thanks you, too.
This is the fourth post in a series sponsored by P&G's Thank You, Mom program. Check out who else is getting thanked over at The Motherhood, who put this program together.
A lot of you probably know Stephanie Nielson from NieNie Dialogues. This Provo, Utah mom of four has been blogging since 2005 about momhood. She's charming, funny, real, and she takes great photos. Her kids are adorable.
In August of 2008, Stephanie was in a plane crash with her husband, Christian. The pilot died. Stephanie had burns on over 80 percent of her body, Christian on 30 percent of his. She went into a coma. Her face was disfigured. At the time, her children were ages 2 to 6.
The posts she wrote when she returned to blogging in January 2009 were heartbreaking, like this one in which she talks about getting her toddler to remember who she was. She underwent reconstruction for her face; she struggled with whether to publish a picture of herself. She bravely did. If this doesn't define "guts," I don't know what does.
Stephanie was just in the hospital for a month, to get skin grafts. In the recent post where she writes about leaving the hopsital she says, "I actually was scared to come back home into the 'real world' where people stare at me and wonder." Obviously, dealing with a child who is handicapped is a whole other ballgame, but I related to the self-consciousness that she felt. The stares Max gets from strangers drive me up a wall.
Stephanie is my hero. Because she's an awesome mom. Because she's got spirit beyond belief. Because she doesn't hide the bad days. Because she defines "beauty." Her husband (aka "Mr. Nielson" on the blog) is pretty incredible, too. His love for his wife and devotion to her are awe-inspiring.
I'll admit, on the days when I feel sorry for myself, I look at what Stephanie's been through and my chin goes back up.
Thank you, Stephanie, for being a role mama, for your beautiful writing, for being a beautiful person—and for inspiring me and countless women every single day.
I am sitting here trying to simultaneously type and scratch my right arm, which is filled with red, blistery bumps. It's poison ivy. I inflicted it on myself. We had a painter come over the weekend to paint the kids' swingset, and he pointed out a big old patch of poison ivy in one area and said he wouldn't paint there. "Oh, I'll get rid of it!" I said. And I grabbed a garbage bag, put on a gardener's glove and yanked it all out. I was wearing short sleeves. My hand looks perfectly fine. My arm is a mess.
I've got a case of poison ivy, all right, but an even bigger case of DIY-itis—this impulse to think I can do pretty much anything myself. This impulse has come in handy for things like researching info about Max and basically any topic in the universe, saving us money on home projects and once, for making Max a ridiculous costume out of a gigantic purple Bed, Bath & Beyond bag.
But often, DIY-itis is a handicap. Exhibit A: my arm (I'll spare you the photo). Trying to do so much myself means I sometimes don't delegate to Dave or even the babysitter, and I end up wiped out, stressed out and—on my craziest days—maybe a leeetle crabby.
The poison ivy actually has come in handy as an appetite suppressant, 'cause it's been making me feel nauseous (though I do not really recommend it as a weight-loss method). Also, this morning, I had two train seats all to myself because a man went to sit down next to me, took one look at my arm and moved on. Gotta love the leprosy look!
So, do any of you have a case of DIY-itis? And if you have ideas for treatment beyond hydrocortisone cream and calamine lotion, bring 'em on!
This is the second post in a series of five thanking mom bloggers who've been meaningful to me, part of the P&G Thank You, Mom program. Gracias again to The Motherhood for inviting me to participate!
Before I started this blog, I'd thought about doing it for a long time. I was paralyzed, for all sorts of reasons. I didn't know how to start a blog. I didn't know if I should use the kids' names. I didn't know what I'd say in my first post—it felt so monumental. It was going to live on in cyberspace eternity! OMG!
This was back in 2008, when I wasn't reading very many blogs. So I started to. One Saturday morning in August, I woke up at 4:00 a.m. for some reason and hit my computer, determined to make good use of the found time and start the blog. I stumbled across Cerebral Palsy Baby. Shannon also has a child, a little girl, with cerebral palsy, and I admired her honesty and can-doism. I e-mailed her that morning, asked for advice about starting a blog, and admitted I was afraid crazy people would find us and come to our house.
Shannon e-mailed me back a couple of days later. She wrote, "It is sooooo hard putting yourself out there to the public that you can't control but I either had to pick to really really edit ourselves or to just semi-edit ourselves. I know people that use fake names, etc. etc. and I simply could never remember to do that. I had to go full force or none at all." She told me to let her know when I got my blog up and running.
I wasn't done with my hand-wringing just yet. I wrote back and said I didn't know if I'd be able to find the time. She responded, "I don't think you need to worry about being SUPER consistent, just make a goal to yourself to blog once a week or twice a month. I know plenty of people who can't blog constantly and their blogs still enjoy a large readership. I think you just have to jump in and see if it is something you enjoy and want to keep up."
OK. Out of excuses. When I got the blog going at the end of October, she was the first person I e-mailed. Subject line: "I finally did it!!!!!!!"
We've kept in touch over the years. Shannon's little girl is doing really well, and she recently had a third child. I'm living vicariously through her, for now!
I started this blog, which has been incredibly cathartic for me in so many ways, thanks to the kindness of a fellow mom in cyberspace. And for that, Shannon, I am eternally grateful.
I try not to ever let Sabrina notice me get upset about Max, and what happened to him. But it was really hard to hold it together in the car the other day. An ambulance drove by, and Sabrina asked why people need ambulances. I explained that ambulances help people who get hurt.
"Why do people get hurt?" she asked.
I tell her that they can get hurt if they're in a car accident, for example, or if they fall down.
"Or if they're crossing the street and don't look and a car bumps into them!" Sabrina says.
"Yes," I tell her.
"Max got hurt a long time ago," says Sabrina.
"What do you mean?" I ask.
"When he was born, he got hurt."
The tears that well up take me by surprise. We've never had this conversation before.
"How did he get hurt?" Sabrina asks.
"His head got hurt," I say.
"How did his head get hurt?" she asks.
I can't talk for a couple of seconds, because there's a sob caught in my throat and I don't want her to hear it. Finally I say, "We don't know. Something happened to him when he was born."
And now I'm slinking down a bit in the seat so she can't look in the rearview mirror and see the tears streaming down my face.
"Was he bleeding?" she asks.
"No," I say.
"Did it hurt?" she wants to know.
"No, it didn't hurt," I say.
And then she's quiet again. And I'm driving, and the tears keep coming. I wish I could pull over and have a good cry, but of course I can't.
A couple minutes later, we get to this big hill the kids love. Max gestures to it. "You want to go up the hill?" I ask.
"YESSSS!" both kids say.
And so we do, and as I drive up it they squeal and then they laugh and laugh when we came down. And I'm laughing, too. And boy, does it feel good.
Last week, Emily and Cooper from The Motherhood—two of the nicest people—invited me and nine other bloggers to participate in P&G's Thank You, Mom program. My mission, if I chose to accept it: thank five bloggers throughout this week who have made a difference in my life. It took me maybe ten seconds to say yes, and the stipend we were offered had nothing to do with it. I am grateful each and every day for the women I've met in the blogosphere—women who move me, make me laugh, give me new persepctive, inspire me when raising a kid with special needs runs down my spirit.
My first thank you goes out to Megan Jordan over at Velveteen Mind. Her humongous heart shines through her blog, whether she's writing about The Gulf Coast Oil Spill; imploring bloggers to care less about the traffic they get and focus more on their writing ("You are not your stats"); or sharing an anything-but-ordinary drive in her car. She writes passionately and movingly. She tells it like it is. Every single time I read one of her posts, I walk away with new insights—about blogging, about motherhood, about myself, about appreciating life.
Megan is also all about giving back. She started BlogNosh to promote other bloggers' good writing. She's partnered with Pepperidge Farm to raise money for Feeding America. She genuinely cares. Let me tell you something else about Megan: I met her for maybe ten minutes at Blissdom, when she was hanging outside a conference room with her yummy baby girl. We e-mailed maybe a couple of times after that. Then last week, a mom website that had asked me to contribute content ended up not treating me very well. I was unnerved. I emailed Megan to ask for her advice. She emailed me her phone number and said to call. And then she took 10 minutes of her spare time (the woman has three kids) to talk with me. Just like that.
Thank you, Megan, for your Texas-size heart—and for being the patron saint of mom bloggers everywhere.
FYI, P&G has a contest going on through November, "Thank You, Mom Reunions," for expressing gratitude to the women who've been influential to us since we were in diapers. Sweet—and you could win $1000.
Hello, it's us, Max and Sabrina! We have broken into Mommy's blog, and we're gonna figure out how to make it all purple (Max) and make it buy me Twinkle Toe sneakers (Sabrina), but first we wanted to wish you a Happy Father's Day.
You are the BEST Daddy In The Whole Wide World.
You feed me (Max) and change me and carry me in the pool and do basically anything for me.
You taught me (Sabrina) how to ride a bike without wheels and even let me ride up and down the ramp with the big boys, though you nearly gave Mommy a heart attack.
You do silly dances with us.
You let us watch TV, and sometimes you even let us watch it at night! In your bed!!!
You take me to soccer lessons and movies (Sabrina) and to my Sunday playgroups and softball league (Max).
You cook me (Sabrina) turkey bacon every Sunday morning.
You buy us stuff at Toys 'R Us and Target even though Mommy tells you not to. Mommy is such a spoilsport.
You pick your shirts to match mine (Sabrina) when I ask you to.
You take us for ice-cream.
You show me (Max) how to do things again and again, and you never run out of patience.
You taught us how funny farts can be, although Mommy did not find that funny, for some reason.
You play tennis with me! (Sabrina).
You let us wear the same clothes three days in a row when Mommy went to Blissdom! And no baths!
You helped us grow a vegetable garden! Can we have a candy garden next, please?
You kiss us all the time and you give the best hugs.
People sometimes say to me, "I don't know how you do it." Well, I honestly don't know how single moms do it. Some days, I feel like I can barely breathe, and I have a husband who pitches in. I can't imagine going it alone.
Two single moms I adore:
The very cool Chrissi, mom to JD, who writes the Mama's Boy blog on Parenting.com. She just did a very moving post on being a single parent on Father's Day. As she says, "It's not just a Hallmark holiday for us."
Janis from Sneak Peek At Me, mom to Austin. She has the most irrepressible spirit.
I'm also thinking about single dads out there, like the astounding Matt Logelin from Matt, Liz and Madeline. I can only imagine this day must feel lonely for them, too.
Please try to visit their blogs and say hi. Know any other single moms or dads we should be showing some love to? Mention them!
This week is full of awesome people with special powers—first Zach Anner, the guy with cp who's winning America's hearts in the Oprah My Own Show contest (and my new crush), and now Eric Duquette, a salutatorian at his high school in Smithfield, Rhode Island, who happens to have autism. Thanks to reader Marcy Nordstrom for this video about his graduation speech, she's always sending me cool stuff.
So, something started bothering me about yesterday's post on Zach Anner, the guy in the lead for Oprah's Your Own Show competition who has cerebral palsy, after I read a couple of comments here and on Twitter comparing Zach to Josh Blue, the winner of 2006's Last Comic Standing, who also has cp.
Why, I thought, do we instinctively compare Zach Anner, a funny guy who happens to have cp, to another funny guy with cp? Why didn't any of us compare Zach to, say, Dave Letterman? Or Chris Rock? Or Jon Stewart? Why did we have to compare a guy with a disability to another guy with disability?
And why do I want Max to only grow up to be like Zach? I mean, of course, it would be awesome if Max had Zach's humor and charisma (well, Max already has plenty of charisma, he just can't get the words out). But why am I not thinking that I want Max to grow up to be like, say, President Obama? Or Bill Gates?
I suspect this is not a problem with a lack of imagination. I think it's that sometimes, when we dream about what the future may hold for our kids, we don't let ourselves dare to dream big. We've dealt with disappointment. We don't want our hearts to get demolished again. Some of us may have been worked over by pessimistic doctors, like the ones we dealt with in the NICU, doctors who permanently handicapped our hopes for our kids. Maybe some of you are like me: really pragmatic, head full of research and medical information and doctors' reports. We know that the odds are against our kids. Or maybe we're just so caught up in the day-to-day realities of caring for our kids and their many needs that we just can't see that much past it.
And so we end up hoping that, within the realm of the world of disability, our kids will fly high—instead of hoping that they will soar in the mainstream world. Maybe we just hope they will function and be happy, period; there have been times when I've thought that I will be plenty content if Max grows up to live independently.
So here's what I'm daring to hope tonight: I hope Max grows up to have Zach's sense of humor and charisma. And Bill Gates' brilliance. And President Obama's savvy. With a twist of George Clooney thrown in.
I hope Max has all of that, and more. And I'm sitting here hoping the same for your kids or whatever may lie in your dreams for them...if you dare to dream.
After hearing about that guy Zach Anner who is creaming the competition in Oprah's "Your Own Show" contest, I finally remembered to actually check out his audition video when alert reader Trish reminded me about it. Thanks, Trish! I was vote # 2,681,487.
I found out tonight that it is humanly possibly to laugh and cry at the same time, because that's what I did when I watched this.
First impression: Wow, that guy is handsome. Second: Wheelchair? What wheelchair? All you can see is Zach's charisma radiating from the screen. Third: I hope Max turns out to be like him someday—that mind! That sense of humor! (Zach described his cerebral palsy as being "The sexiest of the palsies.")
Besides the fact that Zach has a really good idea for a TV show and is genuinely funny, I adored how self-depracating he is. It feels so, so good to be able to laugh at cerebral palsy (and you know I try). It's also amazing that America could see a guy with disabilities making light of his situation. Message being, people with special needs aren't just people you cock your head at and think "Awwwww." They are not people to pity. They're people with talents, they're people to be admired, they're people who can kick other people's butts in contests, they're people who have, hel-lo, the same variety of personalities "typical" people do. It's what I say about Max all the time: Look past his physical challenges and you'll see, HIS PERSONALITY IS NOT DISABLED.
Here is Zach's thank-you-world video on YouTube; stop by his channel to see other amusing videos. Dave, honey, I'm sorry, but I think I have a little crush going on here.
√ Get parents/siblings/relatives/neighbors/mailman etc. to pitch in with caregiving.
√ Figure out way to get my child twenty zillion trillion more sessions of therapy. Preferably for free.
√ Spend more time just kissing, cuddling and playing with child—equally important as therapy. Maybe more so.
√ Get child onto cover of Toys 'R Us Toy Guide For Differently-Abled Kids and/or People magazine.
√ Teach child to quit whining. Or teach child to only whine to spouse.
√ Invent flying wheelchair/blast-off foot braces/drool-proof shirts/magic wand you can wave over people that'll make them quit staring and/or turn them into toads.
√ Stop comparing child to other children.
√ Stop comparing myself to other moms. They may have "typical" kids, but I have a smaller [FILL IN THE BLANK] and a bigger [FILL IN THE BLANK].
√ Suggest BYO IEPs. Teachers and therapists bring the progress reports, I'll bring the mojitos! So much more fun!
√ Organize boycott of overpriced toy and equipment catalogs that rip off parents of kids with special needs. Also, tell their mothers.
√ Come up with cooler term than "special needs."
√ Take time for myself that doesn't involve a supermarket, a doctor's office, Home Depot or The Motor Vehicles Department.
√ Quit wondering what child will "be like" when he's older and focus on awesome stuff he's doing now, including the excellent cuddling skills.
√ Invite Michelle Obama to guest post—way to raise awareness! Maybe President, too! Or Justin Bieber? The Pope???
√ Check to see that my sanity is still intact. It was the last time I looked, but you never know.
It started a couple of Fridays ago, when Sabrina went to kindergarten orientation. Sabrina? Graduating preschool? Already?! CLASS OF 2024? When and exactly how did this happen? This shock despite the fact that sometimes, she sounds far older than her years. Tonight she was play-wrestling with Max on a blowup mattress and when I warned her that he could fall off she said, "But Mommy, it's not steep." That word I used in the car this weekend when I was describing going up a hill. Wow.
This is Sabrina on her first day of preschool. Back then, she hardly ever spoke up in class (although she was plenty loud at home). When I'd ask, "Sabrina, why are you so quiet at school?" she'd answer, ever so reasonably, "Because I don't talk."
Friday's preschool "moving on ceremony" kicked off with a little concert by the kids; they sang classics like "This Land Is Your Land" and a few adorable songs I'd never heard of. I thought I was going to sob nonstop, but I only choked up a few times. Then the teachers handed out certificates, the kids hit the playground for one last time, and there was a big indoor picnic.
The kids were really into picking each other up as if to prove that, yes, they're really growing up.
There weren't many dry eyes during that ceremony, and I'm talking both moms and dads. It's hard to see your kids getting older, because they are so delicious when they're little-little, because they'll never be delicious in quite the same way again and because it's a reminder that you're getting older, too. Me, I had a whole bunch of other emotions mixed in there. Unless we have a third kid, and who knows if we can make that happen, this is my only experience of doing preschool with a typical child. No IEPs, no therapies, no calls about potential seizure activity, no battles to get services, just pure preschool. And I treasure that.
Occasions like this make me realize I've felt gypped of that whole typical-school thing with Max. To be sure, there are plenty of joys I experienced with him during his preschool days. His school firsts—first time he tried to sing a song, first drawing he did on his own, first time he used a speech device—seemed like small miracles. His ability to learn and his focus made me proud. His interactions with other kids gave me new hope.
And, wow, was he cute. But there were joys I'd been expecting with his early childhood, preconceived expectations I'd had, that my head and heart never adjusted to not getting. These are joys that I experienced with Sabrina. Like the joy of hearing your child's voice raised in chorus with a dozen other tiny voices singing the simple, sweet, innocent songs kids sing, some of which you fondly recall from your own childhood. Like the joy of opening your child's knapsack to find pictures she'd colored of Mommy and Daddy, with the words written in squiggly handwriting with backwards letters. Like the joy of overhearing your child chat with another kid in her class about, oh, her visit to grandma's house or her new doll or any of the other things that get kids so excited.
I didn't just savor these joys; I devoured them. And so I am reluctant to let go of this time in Sabrina's life. I want to milk it even more, get out every last bit of pleasure I can to make up for what was lost.
This is the song I can't get out of my head that Sabrina sang on Friday at school. Tonight, I asked her to sing it to me, again.
I couldn't wait to tell all of you about our experiences with the iPad and the Proloquo2Go, an alternative communication app for the iPhone, iPod touch and iPad. Max's school got a few iPads, and Max was chosen to trial one for six weeks.
Max has had his Dynavox for almost two years now, and I am not the biggest fan. For one, it is clunky to lug around, and he cannot pick it up. Max uses it well at school, but we often find ourselves leaving it at home on weekends. Also, it's not hard to program but it's not the quickest. I certainly have no qualms that any of these augmentative communication devices will make Max less likely to verbalize his thoughts; whatever we can do to enable him to express himself is A Good Thing.
Let's start off with how portable the iPad is. It weighs 1.5 pounds; we were able to plop it into a lightweight case and sling it around Max's neck/shoulder. He looked so cute, like he was about to head out to the office. Max is also able to pick it up with both hands, more or less. It's is basically like a gigantic iPhone (but without the phone/camera).
The Proloquo2Go is similar to the Dynavox in that things are grouped into categories; you can use either symbols or pictures. The voice is similarly robotic, which I most definitely do not love. We trialed the Tango a few years ago. Max wasn't quite ready for it back then, but I appreciated that it had a real little boy's voice. I sure hope the next version of the Proloquo2Go has this option.
The Proloquo2Go is supereasy to program. In five minutes, I created a "Weekend folder" on Sunday with photos I'd copied from the Internet ("I visited Aunt Judy"; "I went to a park with Daddy"; "I ate chocolate ice-cream"; "I found a ladybug in my house").
The major challenge Max has with using the iPad/Proloquo2go stems from his dexterity and fine-motor issues. He is increasingly able to isolate one finger (his pointer, sometimes his middle finger) and tap with it. Sometimes he uses two fingers. But he tends to hit the screen with the edge of his nail instead of the pad of his finger, and that doesn't usually do the trick. Also, the iPad requires a light touch and Max's is on the hard side. So far, we haven't found a way to adjust the sensitivity. You can see him in the video writhing in frustration a couple of times when the tapping doesn't work, once grabbing my hand so I'd touch the screen for him.
The other challenge, which I hope is temporary, is that Max is obsessively returning again and again to the "My friends" category so he can show us his best pal at school, Caleb. As his wonderful speech therapist, Jen, told me when I visited her on Friday to learn about the iPad, "Max could sit there and do 'Max' and 'Caleb' for two hours." Yup.
Sabrina is totally jealous of the iPad. "I want you go to the store and get me one!" she wailed, piteously. We let her try it out and talk with Max on it, but she still wants one of her own. Yup. I want one too!!! Waaaaaah!!!
It's awesome how excited Max is. Anytime this weekend we'd say, "Max got a new computer!" his face would light up. Dave and I are excited, too, and that's key. For all the augmentative and therapeutic options out there, the truth is, if it's not something parents are into, it's just not going to work for a family.
Sabrina graduated from pre-K yesterday, and I am still slightly traumatized. Will talk about it more on Monday once I stop bawling over my grown-up baby.
In other Friday news, Max got an iPad from his school, loaded with the communication app the Proloquo2Go. They're letting him trial it. The kids had a screaming fight over who got to use it (Sabrina seems to forget she can talk and Max can't really, or she doesn't care, or a little bit of both). Dave hasn't yet seen it, and being the gadget maniac that he is, he'll probably want to hog it too. Stay tuned.
I have another giveaway going on, which you may have missed: You could win a Sprout Safety First DVD in which fave characters like Bob the Builder and Thomas the Tank Engine teach kids about buckling up and wearing bicycle helmets and how not to maim each other when you're fighting over an iPad. OK, not that.
73 percent of kids recently polled by IKEA for its Playreport USA said they'd rather play with their parents than watch TV. Phew.
Honda is sponsoring an iDream Student Challenge for science and engineering students in the U.S., awarding prizes to those who propose the most innovative solutions and technologies. This team of grad students is coming up with a new gait trainer for kids with cerebral palsy. WHAT a worthy project; let's all vote for them!
Ever fantasize about creating a children's book? Here's your chance! Submit your story to the Bedtime Stories Project; one will be chosen and illustrated by artist Bill Nelson. Deadline: Midnight EST on June 30. I can so see Purple Car Wash Spaghetti Max as a children's story, can't you?! Hmmm....
Oh, and the voting for the Parents Connect award I'm up for is open till June 17. I could still use some votes, given that my mother is only allowed to vote once a day. But if you only have time to vote for one thing, please go vote for the students who are creating the gait trainer!
Got something interesting to share? Go right ahead! Have a glorious, ridiculously fun weekend.
I took a bus the other day, the first time in awhile. The train in New York is a lot faster, but the bus is more relaxing (well, as relaxing as transportation in New York can be). I got on, paid the fare, glanced at the "Won't you please give this seat to the elderly or disabled?" signs on the front seats, which always make me picture Max riding the bus someday.
A guy in a wheelchair was waiting at a stop, and the bus driver lowered the bus so he could wheel himself on. I wasn't watching him; I was watching the reactions of everyone else on the bus, who either outright stared, averted their eyes or seemed to look mildly annoyed at the time this was taking.
I felt a certain bond with this man in the wheelchair. Me, the mom of a kid with disabilities; him, an adult with disabilities; both of us making our way through life as best we can, though obviously our challenges are very different. I counted the number of people on the bus: 54. I wondered whether any of them had disabilities or kids or relatives with disabilities. It's something I find myself doing on occasion when I'm in a crowd, like at a concert in an arena or a show in a theater. You just wonder.
The stats say an estimated 19.4 percent of people in this country—48.9 million people—have a disability. Almost one in five people have a disability.
The stats say that more than 4.7 million children in the U.S. under age 18 have "activity limitations," an estimated 6.7 percent of all children in this country.
The stats say nearly 800,000 adults and kids in the U.S. have one or more symptoms of cerebral palsy; every year, about 10,000 babies born in the U.S. will develop cerebral palsy.
The stats say that the number of children with autism or an autism spectrum disorder is 1 in 100.
The stats say Down syndrome occurs in approximately one out of every 800 live births in the U.S. (3400 babies a year) and that the number of people with Down Syndrome in the U.S. is 400,000.
So many kids and adults with special needs, so many parents out there with kids who have special needs. And yet, sometimes you feel so alone in this journey. Of course, I have friends to talk things through with. I've found amazing company in the blogosphere and other online outlets. I have parents at Max's school to connect with. I have great resources, great doctors, great therapists.
But sometimes, it's just you and a guy in a wheelchair riding the bus, alone against the world.
Max likes to hear stuff over and over and over. It's his way of processing information, his neurologist once told us. I think it's also comforting to him. And perhaps, just perhaps, he has a secret plan to drive us wackadoo.
While there are plenty of times when I ask open-ended questions to encourage him to talk and communicate—q's like "Where do you want to go today, Max?" or "What do you want to eat, Max?"—he most enjoys conversations that are as scripted as comedy routines. Who knows, maybe someday we will take our show on the road, though we might need to work on our material.
Me: "Max loves purple!" Max: "ESSSSSS!!!" ("YESSSSSS!") Me: "And you love spaghetti!" Max: "ESSSSSS!!!" Me: "And you want to go to the car wash soon!" Max: "ESSSSSS!!!" Me: "And you would like to eat spaghetti at the car wash!!!" Max: "ESSSSSS!!!" Me: "And you would like to go through the car wash TWICE!" (Something which Dave has actually done with him.) Max: "ESSSSSS!!!" Repeat.
Me: "Max likes going to the beach!" Max: "ESSSSSS!!!" Me: "And you would like to ride a plane to the beach!!!" Max: "ESSSSSS!!!" Repeat.
Me: "Max loves to sleep in his big boy bed!" Max: "ESSSSSS!!!" Me: "And you like to sleep with your purple pillow!!!" Max: "ESSSSSS!!!" Me: "And you like to brush your teeth!" Max: "NOOOOOOOOOO!!!" Repeat.
I have a thing for summer editions of home catalogs. When I get home from work and sort through the mail, I'll place them to the side, to be savored after the kids have gone to bed. Then I'll lounge on our couch, a throw around my shoulders and glass of iced tea by my side, and gaze longingly at the deck and patio furniture, like this set from Pottery Barn.
And I'll stare and stare at the hammocks, like this $35,000 Hammacher Schlemmer work of art (handmade in Sweden, man not included, and is it possible to take out a mortgage on a hammock?).
I lose myself in these catalogs because, yes, they're beautiful and because they depict a lifestyle of lounging and lolling that's very different from my R&R one (Rushed & Racing). But they also take my mind away to a perfect place where there's no stressing over therapies, doctor visits, school reports and progress. There is no deflecting other people's intrusive stares or kids' jarringly blunt comments. Catalogland is not a place where a child could have seizures.
Come. Rest. Relax, these images say. Everything is OK.
Sprout has this totally adorable Dance With Dad video you can make, part of their Dad's Boogie Woogie Dance Party happening on June 20th. You just upload pics of your kid and your husband, pick an outfit for your child and dance moves, then watch them rock out. You can email the video to friends and family, and also zap it—along with a Father's Day message—to Sprout by June 12th, and it could appear on TV.
In other breaking news, Sprout has a new DVD out, Safety First, that's part of their Let's Grow series. It's hosted by Sean and Chica from The Sunny Side Up Show, and features stories with Barney, Thomas the Tank Engine, Bob the Builder, Fireman Sam and Kipper that relay safety tips like using bicycle helmets, looking both ways, and buckling up. The Sprout peeps gave me two to give away; just leave a comment below about what you're doing for your husband on Father's Day, and I'll randomly pick two winners next Saturday, June 12, announce them here and email you.
Update: The winners are Amanda and GrammyMouseTails.
We had our annual block party this weekend, and it was spectacular, thanks to a guest appearance by Justin Bieber. Well, OK, he didn't come but the party still rocked. We live on a dead end and every year, come early June, nearly everyone in the neighborhood (which spans a half-mile or so) sets up tables and chairs on our street and we bring in a couple of those those blow-up bouncy things and kegs and the adults all hang and the kids run around like lunatics.
This year, there was also a dessert contest. In honor of it, I went to this outstanding Southern food place in our 'hood and bought a sweet potato pie. Not that I tried to pass it off as my own; breaking it out of the plastic sleeve as I approached the judging table pretty much gave me away.
Every year, a firetruck comes by and stays for an hour. The firemen are so great with the kids.
"Mommmmmmmy, I'm juuuuuuuumping, take my picture!"
Max got a kick out of bouncing around with Sabrina...
...and raking the sand pits on the golf course at the end of our street.
He did an outstanding job of navigating the crowd in his tractor. Look closely at the gas tank—he tucked a piece of purple chalk in there.
Sabrina with our neighbor's dog, the aptly named Barkley.
In some ways, this block party makes me aware of how fast time flies. Another year, another block party. Wow, all of the kids are getting so BIG! And look at all the new babies!
And in some ways, the block party makes me aware of how much I ache for Max to keep progressing. It's a little difficult to see the other kids growing up so fast while Max stays in the slow lane, moving at his own pace. Yes, he is doing so much more now than he was last year at this time, and that's beyond incredible. Yes, as long as he keeps progressing, that's what matters most. But this is one of those instances when I can so clearly see the gap between him and other kids widening, and it gives me pause. Not in an excruciatingly sad way or anything. Just one of those "Oh" moments.
Mostly, it made me happy to see him enjoying himself so much.
Oh, and in case you were wondering, my store-bought sweet potato pie did not win the bake-off.
We had the nicest evening tonight with the kids, the kind I couldn't have planned. We went to get ice-cream at Stone Cold Creamery. Max usually wants chocolate, but tonight he demanded a blueberry smoothie (such a lovely purple color) with a scoop of chocolate ice-cream. Then we sat down outside. While we were there, a violinist and guitarist set up right near our table and started playing. It was so relaxing to sit there and listen to live music, something I haven't done in a long time. Max stood there and stared, mesmerized.
As we walked back to the car, he ran up to Starbucks and insisted on going inside. Then he walked right up to the counter.
"Ah-hee!" he said to the barista.
It took a second but then, duh, Dave and I realized what he was saying. We were in Starbucks, after all, and Max wanted coffee. Dave has a Starbucks habit, and it seems to have rubbed off on Max.
I looked at her, winked and said, "Yes! He'll have coffee!"
She knew just what to do: She filled up a coffee cup with water, put a lid on it, then slipped on one of those cardboard sleeves to make it all authentic.
I've had a lot of sad thoughts these past few days, capped by Jeri's mention yesterday that she had a daughter, Amber, who had spina bifida and died of a respiratory infection. This week I also learned that Mama Pundit blogger Katie Granju had lost her teenage son. Gazing at photos of Henry Louis—so beautiful, spirited and full of life—was painful.
I first read about what happened on Her Bad Mother, Catherine's incredible blog. She's also dealing with a family tragedy: Her sister's son, Tanner, is dying of Duchenne Muscular Dystrophy (DMD). Kristen over at Shredheads started a cool campaign to help raise awareness about DMD, Tutus for Tanner; please check it out.
When I hear these stories I grieve for the children, but I'm haunted by thoughts of what their parents are going through. They knock any pity I have about my own life situation right out of me. Sometimes, you get so distraught by the challenges your sweet child faces and the drama of his disabilities that you forget there are far, far worse fates. Sometimes, when you're the only parent in your group of friends who has a kid with disabilities, you feel as if you were the only family struck by lightening, that "Why us?" question seared into your heart. Sometimes, when you sense people feeling sorry for you, you sink into the mire yourself.
Perhaps I do occupy a certain circle of parent hell because of Max's stroke and subsequent disabilities, like those circles of suffering I read about in Dante's Inferno as a college freshman. But certainly, parents whose children have passed away or whose children are terminally ill occupy far deeper circles of parent hell.
I used to volunteer in the pediatric playroom at Memorial Sloan-Kettering, a hospital that treats cancer patients. The kids there behaved like kids; they may have been gaunt, bald and hooked up to IVs, but they still wanted to play games, color and just be kids. It was the parents who'd sadden me. They were the ones who looked like the walking dead.
There are other circles of parent hell, in my mind. There is one inhabited by parents whose children have gone missing. And there is one filled with parents whose children have been abused. And there is one with parents whose babies have been stillborn. I think about these circles of parent hell whenever I hear a horrible story about a child.
I have no words left tonight, just thoughts of Amber, Henry Louis and Tanner, and their parents.
Tonight, I was reading a book to Sabrina after Max had conked out, one from the adorable Charlie and Lola series—But Excuse Me, That Is MY Book. Lola's obsessed with a book called Beetles, Bugs, and Butterflies, and Charlie (her older bro) tries to introduce her to other kinds—one about Romans, a pop-up book, an encyclopedia. As we sat on the floor, Sabrina on my lap, it occurred to me that she is missing out on some of the benefits of having a typical big brother.
I don't sit around thinking about what's lacking in our lives or, in particular, Sabrina's. Mostly, I'm cheering on and celebrating Max's progress, as I did yesterday. It takes a book, a comment, an incident to spark a realization like this. Oh. Sabrina doesn't have the type of older brother who can introduce her to new books. Or teach her to ride a bike. Or explain things to her. Or protect her from other kids. It's all reversed—Sabrina's the one showing Max how to do stuff, and deflecting kids' mean comments. Once, on a vacation, the kids' club staff gave Sabrina a "Best Big Sister" award.
I've written before about how Sabrina can be Max's best friend, and worst enemy. That hasn't changed, though the intensity has. Lately, when she gets mad at him, she is so, so mad. She pushes him (and he pulls her hair back). She chants "Max loves GREEN!" when she knows he's all about purple. She says obnoxious things such as "Ewww, he smells like drool." But when she's sweet to him, she is tender beyond her years. Like this weekend at the beach, we were having a barbecue and she grabbed Max, pulled him onto her lap (she's got 10 pounds on him) and hugged him tight.
And yet, even as I sit here pondering the things Sabrina may not learn from her brother, I know there is plenty she can learn from him. The really big, important stuff that makes you a good person in this world.
I hope Max teaches her patience, which she could use more of.
And tolerance.
And acceptance.
And understanding.
And extreme kindness.
And empathy.
And sensitivity.
I hope she learns from Max that you can be different than other people, but still be a perfectly great person.
Most of all, I hope that her big brother's beautiful spirit, strength and perseverance inspire her—more than books or words ever could.
