Blog Feed: To The Max

Camps for kids with special needs: Max is doing two!

Published on 2012-05-25 12:50:38

Max's summer plans are set: He's returning to the one-week camp for kids with special needs that he went to last year, and loved. I'm particularly excited about the inclusive day camp he'll also be attending. He's going to miss two weeks of his school summer program, but Dave and I decided it was worth it—both for the inclusionary experience and for fun. I was so psyched to find this program, because they're rare. While it's possible to work out an arrangement with a local day camp, several t [..] > read more

Could an ER handle your child? Are you sure?

Published on 2012-05-24 15:08:52

The seizure started around 6:45 a.m. Max had crashed in bed with me and Dave; I woke up when he did. I felt the heat radiating through his pajamas—Max had a major fever. I jumped up to grab a thermometer, and that's when I saw one of his feet start to twitch. In a heartbeat, I knew what was happening. "DAVE!" I screamed. "LOOK." Dave woke up and saw. And then, suddenly, Max's entire body was shaking. I started crying as I dialed 911. "My child is having a seizure," I shouted to the woman on [..] > read more

How your money personality affects planning for your child's future

Published on 2012-05-22 05:50:01

Dave and I have been going through the process of planning for Max's financial future and let me just say, gathering the documents has been the most fun thing I've done in forever! Um, OK, not. Happily, after we got through that all we've had to do is sit back, talk and listen. Among the stuff we had to collect: • Statements from savings, retirement and investment accounts • Property insurance summary pages • Life insurance statements • Two years of tax returns • Social security and [..] > read more

3 signs you're getting old

Published on 2012-05-19 21:36:44

Sign #1: The other day, you saw the Harvard baseball players lip-synching to Call Me Maybe on the Today show. When you watch the viral video on YouTube, your 7-year-old thinks it's SO funny that Mommy is watching that. She's known the song for months. > read more

My amazing Max meets The Amazing Max and magic happens

Published on 2012-05-18 10:12:44

The invite came months ago: Would I like to take the kids to see The Amazing Max And The Box of Interesting Things? It's a one-man show in New York City with magician Max Darwin, a popular performer who's hosted a show on Nickelodeon, done performances for celeb clients, and wowed audiences at more than 3000 magic shows. At first, I was just going to bring Sabrina; Max can't stand theaters. But then, he tolerated that performance > read more

Treatments for cerebral palsy and other astounding news

Published on 2012-05-17 07:59:59

In the last few months there's been a spate of studies about cerebral palsy, some of which will blow your mind—in a good way. Max's cerebral palsy is part of who he is, but if there were any way to diminish it and make his life easier, of course I'd want to. These studies give me hope—for Max and other kids with CP, and for babies at risk for it. Found: a new cause for cerebral palsy. > read more

The secret sauce to my sanity and Mom 2.0

Published on 2012-05-16 23:00:54

For the record, the secret to my sanity does not have anything to do with the communal shower room at the Versace Mansion in South Beach, even though that's where I'm standing here and it wouldn't suck to have one. You know, in my very own mansion. Staying sane also doesn't require a visit to this beautiful hotel, even though it seriously helped. This woman, actually, is part of the secret to my sanity. Her name's Ellen (wahoo!) and she writes over at Confessions of an IT Girl. She's al [..] > read more

And then Max grew up to be a barista

Published on 2012-05-15 08:31:34

For years, Max has had a table in his room he can write on with an erasable marker. It's a cheap one I got years ago at Bed, Bath & Beyond that I need to replace, because it's too baby-ish for him. Thing is, it comes in handy: Sometimes, he likes to draw on it or practice writing his name. Most recently, he likes to ask me or Sabrina to write out a list of preferred drinks of notable people in his life: Max drinks chocolate milk Caleb drinks water Mommy drinks iced coffee Daddy drinks hot [..] > read more

What I've learned about motherhood from my child with special needs

Published on 2012-05-14 19:59:45

I wrote a guest post for the Huffington Post this weekend, part of a Mother's Day series. They asked me to write about what I know about motherhood from being a mom of a child with special needs. A snippet: Perfection is in the eye of the beholder. Some people might look at my son and see a child who walks a little unsteadily at times, speaks unclearly and has trouble grasping things. Me, I see a child who miraculously walks, talks in his own way and does his best to make his hands work even th [..] > read more

A boy walks to his U.S. Marine dad for the first time: a must-see video

Published on 2012-05-11 16:43:59

If you have a kid with cerebral palsy or another disability and you were told he might never walk, you might know how it feels to see your child take his first steps. Seeing Max toddle from Dave's arms into mine, with a big grin on his face, was one of the happiest moments of my life. I can't imagine how it feels, however, to be a soldier stationed abroad who's never seen his child with cerebral palsy walk—and come home to find that he is. > read more

Press Here: a supercool app giveaway

Published on 2012-05-11 11:53:56

The kids have been seeing spots lately. Lots and lots of spots. I'm not worried—actually, I'm thrilled. It's because I got an app to review, Press Here, and Max and Sabrina are fascinated by all the cool and creative spotty stuff it does. The app is based on the bestselling book Press Here, by Hervé Tullet, that's all about using your imagination. Kids pretend that the dots they're pressing, shaking and blowing move around. Of course, the dots actually > read more

The best Mother's Day cards ever

Published on 2012-05-11 09:16:54

Mother's Day came early at our house, because the kids were so excited to give me what they'd made. Also, as Dave excitedly noted by phone last night (he's been on a business trip this week), "It's less expensive to send flowers on Thursday!" OOOOOOOOOKAY. The roses are beautiful and it's the thought and counts that all, but I think maybe I didn't need that thought? Bargain roses still smell as sweet Max's card made me particularly happy because, well, you know. It said: I think of al [..] > read more

From my "little things that make me happy" files

Published on 2012-05-10 05:45:00

I love that he is still able to comfortably fit on top of the kitchen counter. Because for all the years I worried that Max wouldn't grow up and do things > read more

7 recent photos I love

Published on 2012-05-08 05:50:00

I wish I had more time in life to do photography. Hobbies? What hobbies? Mine consist of raising kids, talking on the phone with the insurance company, swiping Max's Cheez Doodles > read more

Pay it forward to another special needs mom

Published on 2012-05-07 14:08:15

Mother's Day is awesome and all, especially if you get to sleep late, but I have a way to make it an even sweeter celebration: Show another special needs mom some love. My idea comes from > read more

A new special needs video series and other Stuff Worth Knowing About

Published on 2012-05-05 06:00:05

A video series about kids with special needs: > read more

Yes, people with disabilities can be parents. Why is that shocking?

Published on 2012-05-04 14:46:47

Authorities are threatening to take away the baby of a Canadian couple who both have cerebral palsy unless he receives round-the-clock care. It's a mind-boggling story, and I'll share it here in case you haven't yet heard about it: Maricyl Palisoc and her partner, Charles Wilton, are the proud parents of William, one month old. They live in Ontario. > read more

Ashton Kutcher's twin brother fights to spare kids from cerebral palsy

Published on 2012-05-03 08:14:49

I never knew Ashton Kutcher had a twin brother, Michael, or that he had cerebral palsy. But now I do and I am wowed. Recently, Michael traveled to Washington, D.C., to push for more research funding for preventing CP. Michael has a mild form that affects his right side, hearing and vision. He's befriended an awesome little girl, Bella, who has more involved CP; she was there with him. One in every 268 kids has cerebral palsy and > read more

The sound that's better than Prozac

Published on 2012-05-02 08:34:56

For a couple of months, Max has toted around a Cars 2 DVD wherever he goes. It's sat on the bathroom sink when he's taking a bath. He's slept with it by his side. It rode with us in the jeep on our desert tour in Arizona. Max particularly liked that the back of the case had stickers that spelled M-A-X. But during our > read more

IEPs make me cry

Published on 2012-05-01 12:00:49

Last week was Max's IEP meeting (that's Individualized Education Program, for those of you who've never had the "privilege" of attending one). This is Max's sixth IEP, and everyone on his school Team Max showed: one PT, one OT, one speech therapist, one teacher, one nurse, one school administrator and our district coordinator. I have a tradition at these IEPs, and it doesn't involve bringing a thermos of daquiris, though that would be ever so helpful. Every year, I get teary. Seeing all the goa [..] > read more

Found: the mystery girl with Down syndrome who's a cruel web joke

Published on 2012-04-30 20:38:40

Perhaps you've come across the photo—in the last few years it's spread around the web, typically posted with derogatory captions like the above. The girl in the picture is British and now a teen, I found out this weekend; her name is > read more

A teen with Down syndrome crowned prom king, and my dream for future kings

Published on 2012-04-27 22:23:48

Last weekend Max Jackoski, a high school junior with Down syndrome in Lake George, New York, was named prom king. His mom, Lisa Jackoski, taped this video of his coronation. As she said, "Many of his classmates approached us after the coronation and said they decided as a group that it would mean more to Max than any of them." Max got a standing ovation. He attended prom with a classmate, Hanna Saroff, who'd reportedly asked Max's parents permission first before asking him out. "I wanted to [..] > read more

A visit to Scottsdale and a whole lot of family fun

Published on 2012-04-27 22:06:30

Our family trip to Scottsdale, Arizona can best be described as an insane amount of fun. There's good reason Travel & Leisure named Scottsdale one of the best warm-weather family adventure destinations. Before we went I did lots of research on stuff to do, and prayed for some > read more

Why teachers abuse kids with special needs (and how to tell if something's up)

Published on 2012-04-26 11:46:16

A boy with autism bullied and abused by teachers: The story's been zooming around the web this week. It's horrifying and, if you have a child with special needs, particularly gut-churning. I'll recap it for you: Stuart Chaifetz is dad to Akian, a ten-year-old with autism who attended Horace Mann Elementary School in Cherry Hill, New Jersey. As Chaifetz recounted in a > read more

Special Needs Mom haiku!

Published on 2012-04-25 10:21:54

Oh doomsaying doc My child has much potential Not in your med books Mmmmm mmmmm mmmmm mmmmm mmmmm Lips together, make that sound Try, sweetie pie. Try. IEP's coming Will he get more therapies? Curse you, budget cuts > read more

What home improvement would make life easier?

Published on 2012-04-24 08:41:48

Here's Max in the walk-in shower at the Hyatt Regency Scottsdale we were just at. For two days after we got there, Max wouldn't venture in there. He shrieked-cried when Dave finally dragged him in. And then, it was love. The shower had a rainfall shower head and a hand-held hose. And you know what? If you spray a hand-held hose against the glass door, it looks just like a car wash. Yessssirreee. Yet another vacation breakthrough! > read more

Building confidence in our kids through creativity

Published on 2012-04-23 05:55:01

Ever heard of The Miracle Project? It's a nonprofit that enables kids and teens with autism and other special needs to express themselves through music, dance, acting, story-telling and writing. You've gotta love their motto: "ALL children of ALL abilities grow in school and in spirit while creating and performing in original musicals." The organization is in need of more money for more programs. Happily, its expanding its theater and film arts program to San Diego and San Jose, thanks to a gra [..] > read more

A bike giveaway, a great musical, discount toys and Other Stuff Worth Knowing About

Published on 2012-04-20 07:44:16

Win an adapted bike for your child with special needs! The Friendship Circle, a nonprofit that offers social programs for kids with special needs (Max is a MAJOR fan), just kicked off > read more

Tootsie Pops, talent and a special needs reality check

Published on 2012-04-19 10:42:29

Sabrina recently learned about Tootsie Pops in school. Her teacher sent an email explaining that she'd be using the lollipops to help kids understand what people see when they look at them. As she wrote, "Everyone has something valuable inside that we might not see at first. The 'soft center' of people represents what we all have in common: feelings, hopes, dreams, fears, and insecurities. To feel safe and protected, people often use a hard outside to hide their soft core. However, a tough out [..] > read more

Max is now a barfly and a groupie

Published on 2012-04-18 10:20:37

We’re back from vacation in Scottsdale, and as soon as I sort through a billion more photos I’ll gladly share because we had a phenomenal time. Here’s Max with a band that's a regular at the hotel where we stayed, the Hyatt Regency Scottsdale Resort and Spa at Gainey Ranch. Our first evening there, after dinner, we heard music coming from the lounge area and strolled in. Max immediately made a beeline for the elevator—he does not like loud sounds. But then, he paused. He cautiously [..] > read more

10 ways to encourage your child to talk

Published on 2012-04-17 05:45:00

If you have a child who has challenges with speech, you're always up for a good tip... or trillion! I've got ten great ones here from Sherry Artemenko, a pediatric speech-language pathologist in Southport, CT who's the founder of > read more

Potty training a kid with special needs: Yet more inspiration!

Published on 2012-04-13 05:55:00

My friend Judith Newman, one of the smartest, funniest writers and women I know, once did a piece for Child magazine about "outsourcing" potty-training for her son, Gus. He was eventually diagnosed with autism which, she realizes in retrospect, played a role in it. Judith is the author of You Make Me Feel Like An Unnatural Woman: Diary of a New (Older) Mom. I know you'll appreciate this one. Potty Outlaw: > read more

This Is How I Do It: Kate of Chasing Rainbows

Published on 2012-04-12 05:45:01

This is another guest post in the This Is How I Do It series, which features awesome bloggers who have kids with special needs and their survival/sanity secrets. > read more

Myths and truths about autism from a doctor who knows

Published on 2012-04-11 06:00:03

In honor of Autism Awareness Month, I'm thrilled to share a guest post by Dr. Gil Tippy, clinical director of the Rebecca School in New York City for children on the autism spectrum ages 4 to 21. He is coauthor, with Dr. Stanley I. Greenspan, of Respecting Autism, a book about 16 students and the tactics that have best helped them. Dr. Tippy is all about respect—for the kids he works with, and for their families. As you can see, it shines through in his responses. Dr. Tippy with his daught [..] > read more

Holiday meals, kids with special needs and celebrations

Published on 2012-04-09 22:12:30

"Why is this night different than all other nights?" is a question asked during the ceremony for the traditional Passover meal, the seder. The answers explain the customs associated with the dinner. Such as, on all other nights we eat bread and matzoh; tonight, we only eat matzoh. In our house, however, the question that usually holds most true is "Why is this night the same as all other nights?" Because Max is Max, and the things that bother him any other time—noise and commotion—still do. [..] > read more

Kids With Special Needs Around The World: Russia

Published on 2012-04-05 06:09:54

The girl in this photo is Nadya. She's 9 years old and has cerebral palsy; she lives > read more

Raising a kid with special needs: On parent delays and development

Published on 2012-04-04 05:42:00

When you're raising a kid with special needs, you think a whole lot about their development. You wonder about the whens, you try not to dwell too much on the whys, you go nuts celebrating the you-did-its. You think a lot less about your own progress, as a parent. I mean, who has time?! But I've been thinking about this a lot for the last few days, as we've finally gotten into the swing of potty training. > read more

Potty training kids with special needs: weekend boot camp, Day 2

Published on 2012-04-03 21:28:51

Potty training boot camp: > read more

Potty training kids with special needs: weekend boot camp, Day 1

Published on 2012-04-02 23:02:13

Potty training boot camp: Day 1, Saturday 9:05 a.m.: Oops, Dave let me sleep late. Max has been up for an hour already and I'm betting Dave didn't put him on the potty. OK, chill. Max hasn't been potty-trained for seven years, one hour won't make a difference. 9: 15 a.m.: I find Max, change him, say some potty prayers, get out my potty-training boot camp gear: • > read more

Fun with reading!

Published on 2012-03-30 06:00:17

Sabrina likes reading to Max at night. It's one part sisterly love, one part show-off because she's very proud of herself for reading so well. This is a beautiful thing. Except that when I'm reading to Max and getting him to sound out words, Sabrina likes to interject and say them herself: "Stop!" "Green!" "Purple!" "Sabrina, let your brother read!" I'll say. "OK," she'll say, sweetly. And then 5 minutes later, she's back again, reading for him. Mostly, I'm glad they're both loving reading. [..] > read more

11 things you do when you're tired

Published on 2012-03-29 08:49:35

Usually, I go to sleep around midnight. I function (and look) better when I crash earlier but staying up till 12 (sometimes 1) is the only way I can finish up stuff. I wake up at around 7, along with Max who is still making his way to our bed in the middle of the night (DON'T GET ME STARTED). Most days, I'm fine; I have good energy, and it's got nothing to do with eating right or exercising a lot because I am sorely lacking in both areas. Sometimes, though, the sleep deprivation hits me and I f [..] > read more

Special needs parenting rule no. 1: Control yourself first, your child second

Published on 2012-03-27 22:53:44

For days, I dreaded it. Not some Serious Doctor Appointment. Not a new form of therapy. Not a trip to the dentist. No, I was dreading Max's class trip to a local theater to see a musical production of The Magic School Bus. Max has never in his life sat through a performance in a theater, not even for the movie Cars 2 (for that, we went to a drive-in > read more

A school bans a kid with cerebral palsy from using her walker, a mom takes action

Published on 2012-03-26 15:30:55

A mom of a kid with cerebral palsy is gearing up to file a lawsuit against her school district, because a special education director is saying her little girl can't use her walker. Pick your jaw up off the floor and read on. LaKay Roberts, who's 5, uses her walker to, er, walk. You know, as kids with CP often do. She's been using it for three years, and attends Kings Manor Elementary School in Kingwood, near Houston. Occasionally, she also uses a wheelchair. Her mom, Kristi Roberts, says that [..] > read more

A special needs equipment registry, a cool book club and other Stuff Worth Knowing About

Published on 2012-03-26 10:48:32

A registry for special needs equipment: Tadpole Adaptive recently launched a registry where parents can register for adaptive equipment (everything from gait trainers to car seats), and then friends and family can contribute as they please. Maybe not quite as fun as registering for wedding china but, er, so much more useful.A great book club for kids (and grownups)! I recently got to try out Just The Right Book, a personalized subscription service for kids and adults. And it is very personal—y [..] > read more

9 best things to do for a kid with cerebral palsy (that don't feel like work)

Published on 2012-03-23 08:42:53

What are your best tips for kids with cerebral palsy? That's what I asked an amazing pediatric therapist in honor of > read more

On the road of special needs parenting

Published on 2012-03-21 06:48:02

NOW "Eeeyah yah ah eeeyah ah ah AH!" says Max. I'm driving our minivan, and Max is babbling in the backseat. I listen, happily, occasionally peeking into the rearview mirror to watch. I am not sure what he's saying, but there's intonation there and he sounds like he is having the most awesome conversation with himself. He seems to love the sound of his voice. I sure do. THEN Max is 18 months old and I am driving him to aquatic therapy, one of the 12 sessions of therapy he gets every week. M [..] > read more

Max needs a driver's license. Plus, potty-training armageddon is near

Published on 2012-03-20 12:36:44

Last Sunday, Sabrina and I were cruising around. She had strep throat, and I took her out for ice-cream because of course that and antibiotics are the best possible cure, but mostly Mud Pie ice-cream. My cell rang; it was Dave. "Can you come pick us up?" he asked. Max had decided to pedal his tractor into town. Mind you, it's a good half mile from our house. And then he kept right on going past town. He was showing no sign of letting up, and Dave figured he was going to run out of steam at an [..] > read more

Dealing with the invisible disabilities of preemie babies

Published on 2012-03-19 07:56:35

This guest post is from Nick Hall, an amazing father who's behind > read more

Last weekend, we went to Hawaii

Published on 2012-03-18 21:43:20

OK, so technically we were at The Philadelphia International Flower Show 2012, but this year's theme was Hawaii and it was just like the real deal. (And I know, because I've been to the Big Island!) All of us love road trips, we had an amazingly fun weekend. > read more

8 ways I related to a mom orangutan at The Philadelphia Zoo

Published on 2012-03-16 09:02:39

> read more

Special treatment for kids with special needs (and the fine line we walk as their parents)

Published on 2012-03-15 11:31:51

I want my child to be treated like every other child. I want my child to get special accommodations for his disabilities. These two things may seem contradictory. Actually, they're not. Like many things in life, they don't fit into neat, defined approaches. I'll try to explain. One of the things I most desire for Max is for other kids and adults to look past his disabilities and see the amazing child that he is. > read more

Look who's writing!

Published on 2012-03-13 05:45:01

OK, so I won't be hiring Max out anytime soon to address wedding invitations. But holy handwriting: He is scribbling his name by himself! Quite the feat for a kid with hands that sometimes don't do what he wants them to do. Squeeeee! Max uses a pencil encased by foam tubing, the same kind we use for the maroon spoons he eats with. The stuff looks like this, I get it at Discount School Supply: Once again, let me just say, TAKE THAT, DOOMSAYING DOCTORS OF THE NICU. Yeah. > read more

What I'd like you to say to my kid with special needs

Published on 2012-03-12 06:17:46

You and I are at the playground with our kids. Perhaps we are sitting on a bench, chatting about the stuff moms talk about when they first meet—school, our ridiculous taxes, the best place to get the kids a haircut, the weather, you know. My daughter walks up to us and I introduce her to you. Her name is Sabrina, and she's 7. "Hi," you say. And then maybe you ask how old she is. Or where she goes to school. Or if green is her favorite color, because she's wearing a green shirt. Or what [..] > read more

Share your posts about the r-word—a linkup

Published on 2012-03-10 06:00:04

Spread The Word To End The Word Day was Wednesday, and a whole lot of people wrote a whole lot of powerful posts about the word "retard." Please share them here so we can spread the word even more. Feel free to post ones from previous years, too. Where it says "Your name" put the title of your post, and where it says "Your URL" for the link put the direct URL to your post. Done! > read more

Haters gonna hate, and this blogger's gonna pity

Published on 2012-03-08 21:19:26

If you blog, you know that putting yourself out there means you open yourself to offensive comments. As with many things in life, you can't control people—but you can control your reaction. An article on CNN.com that featured my video about the word "retard" ended up on the homepage and it triggered an avalanche of arguments, anger, ignorance and hate. Comment sections on news sites tend to bring out the worst in people. You wonder why some people have so much time to sling nasty around—as [..] > read more

Would you call my child a retard?

Published on 2012-03-07 09:49:25

"I use the word retard every day." "A campaign against a word is retarded." "Thicken up ur skin and stop taking this stuff so seriously!" "Being called a retard is a common insult that is usually deserved by the recipient." "To speak out against the use of just one word, simply because it's personal to you, is unacceptable." These are some of the recent comments I've gotten on posts about how demeaning the word "retard" is. Last year, when I did that Twitter project where I tweete [..] > read more

Myths and realities about financial planning for kids with special needs

Published on 2012-03-06 06:00:06

Planning for the financial future of kids with special needs can be really overwhelming, not to mention perplexing. I don't know about you but financial anything is not one of my strengths, let alone the kind that involves making sure Max is taken care of as an adult. One word: eeep. I'm glad to be working with Massachusetts Mutual Life Insurance Company (MassMutual) on a series of sponsored posts about planning, for my sake and yours. The following super-helpful (and very reassuring!) info [..] > read more

My dad lives on every day

Published on 2012-03-05 09:34:04

Tomorrow, it'll be a year since my dad died. I think of him every day, but not in a sad way anymore. I think of him when I honor the way he lived. First thing in the morning, and throughout the day, I walk by his old phone. Dad kept this one till the end. I have this little ritual of pausing for a minute by the phone, before the insanity of the day begins, and thinking about what I can do to make it a good day. In the morning, we all sprinkle chia seeds into our yogurt and oatmeal. M [..] > read more

Helping other parents teach their kids about ours

Published on 2012-03-02 05:45:01

Nowhere in my mom job description does it list "Educate other parents." But sure enough, that's become part of what I do as the parent of a kid with special needs. It hasn't always come easy, and over the years I've gotten better at it. Not a master, but better. Still, I'm always curious to hear how other parents handle this. So I asked some of my favorite bloggers and advocates, including Holly Robinson Peete, what they wished other parents would teach their kids about children with special ne [..] > read more

Kids and adults with special needs who give you hope

Published on 2012-03-01 05:53:01

Back after Max was born, I spent a lot of time emailing moms on The Pediatric Stroke Network e-loop. I was especially interested in connecting with ones whose kids were older six and up. Hearing that their children were walking, talking and generally doing OK gave me the hope I was hungry for. The doctors hadn't given us much to go on. Now when one of you tells me how much Max gives you hope, it thrills me—because I know how you feel, because I am glad Max gives you comfort, and because I am [..] > read more

What I Do: Kids with special needs

Published on 2012-02-28 23:31:20

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9 bits of bliss from the Blissdom 2012 conference

Published on 2012-02-28 09:04:27

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 bl [..] > read more

The iPad and Proloquo2Go: Max uses them at school, gets famous

Published on 2012-02-27 05:50:00

We're big fans of the Proloquo2Go speech app in our home. So when the developer asked if I'd let him videotape Max at school using it, I immediately called the principal, along with Max's agent and publicist, of course. Here it is, soon to be a major motion picture! OK, maybe not. But it is rated "G" for "Good Stuff." The speech therapist, Jen, is the one who first got Max to try an iPad. She's all sorts of amazing. Also of note: The part where Max leans over to the other girl's iPad to sh [..] > read more

This Is How I Do It: Lana of Along Came The Bird

Published on 2012-02-24 05:45:01

This is another guest post in the This Is How I Do It series, which features awesome bloggers who have kids with special needs and their survival/sanity tricks. Blogger: Lana Rush of Along Came The Bird Her kids: Lily, 5, who has autism and sensory issues; Reagan, 15; and Ryley, 18. My three biggest secrets to sanity are... 1. My faith. I truly believe that the Lord is what gets me through each and every day. You might have figured out by the ages of my daughters that Lily was [..] > read more

Our kids' obsessions: enter the labeling phase!

Published on 2012-02-23 08:27:31

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 o [..] > read more

Better therapy sessions for kids with special needs: therapists share!

Published on 2012-02-22 09:52:32

I recently asked a bunch of pediatric therapists how kids can get the maximum benefits from therapies: speech therapy, occupational therapy, physical therapy, ABA therapy, whatever therapy! All of these experts are contributing columnists to PediaStaff, and they didn't hold back on advice or honesty. Hope you find their words as helpful as I did! From Melanie Potock, a pediatric speech language pathologist and feeding specialist in Longmont, Colorado who blogs at My Munch Bug DO... • ...Fe [..] > read more

Brain boosters for kids with special needs

Published on 2012-02-20 21:43:05

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 p [..] > read more

There are places I remember

Published on 2012-02-17 15:03:42

We visited the pediatrician yesterday for the gazillionth time; Max was sick. (If only doctors' offices offered Frequent Fever Miles!) Turns out Max had strep throat, but you wouldn't have known it to look at him. He ran around the office like he owned the place, charming the nurses into finding purple stickers for him and letting him try a stetheocope and playing with various toys. The waiting room has one of those wooden bead mazes. When Max was little, he wasn't able to manipulate the beads. [..] > read more

iPad giveaways for kids with special needs: here's another!

Published on 2012-02-16 21:49:28

I've been wishing I could do more iPad giveaways for kids with special needs. And then, I got an email from a reader, Deborah, who lives in San Francisco and works for a non-profit. Deborah has an iPad she'd like to give to one of our kids. As she wrote, "My husband recently received an iPad as a Christmas bonus from his boss and so now we have two. I remember seeing several posts about an iPad giveaway gone awry and the many parents who commented how much they would appreciate one for their chi [..] > read more

When your kids love the stuff you loved as a kid

Published on 2012-02-15 10:22:29

Here's Max, watching Tom and Jerry for the first time and loving it. I got the biggest kick out of watching him, because I was remembering what a laugh riot I thought the show was when I was a kid. 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 [..] > read more

Getting people to see the ability instead of the disability

Published on 2012-02-14 11:59:48

"Wow, he can dance?" 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 [..] > read more

Conversation hearts for special needs parents: Happy Valentine's Day 2012!

Published on 2012-02-14 08:33:11

XOXO, all! Check out Conversation Hearts For Special Needs Parents: The Video. You can email it to friends if you care enough to send the very best, or something like that. > read more

Looking at life from the bright side up... plus, happiness giveaway!

Published on 2012-02-10 08:48:44

Ever have a coworker who was irrepressibly upbeat, cool, funny and totally real, no matter how hectic things got? Amy Spencer is one of those people. We worked together at Glamour. See? Happy! It wasn't really a surprise, then, to find out she'd written a book about happiness: Bright Side Up: 100 Ways To Be Happier Right Now, out this week. It's a super-interesting read, but you also get a whole lot of good, practical ideas out of it from Amy and the many women and experts she spoke with. [..] > read more

Sarah Palin, allow me to adjust your special needs attitude

Published on 2012-02-09 10:25:26

By now you may have read Sarah Palin's essay for Newsweek, Life With Trig: On Raising A Special-Needs Child. She's talked before about her feelings on having her son, who has Down syndrome, in her 2009 memoir Going Rogue: An American Life. This time, she got into particulars of bringing up Trig. Putting aside our political differences, I appreciated it when she noted that families of kids with special needs are "bonded by a shared experience of the joys, challenges, fears and blessings of raisin [..] > read more

This week, the world lost an amazing woman. Will you help honor her memory?

Published on 2012-02-07 21:39:56

Every once in awhile, you meet a person who makes you very aware of what it means to be a truly exceptional human being. A person who genuinely cares about the well-being of others, who is the opposite of selfish, who's warm and kind and real and who perhaps has a wicked sense of humor, too. For me, Susan Niebur was one of those people. I found out today that she had died. She was 39.A mom of two and a planetary scientist, Susan wrote Toddler Planet. For the last five years, she's lived with inf [..] > read more

Special needs motherhood is the necessity of invention

Published on 2012-02-07 05:45:01

"Ever notice how being a special needs mom means that you have to be really creative in your thinking?" Barb recently emailed me. She's mom to Rhys, who's 8 and has cerebral palsy. And, yes, I knew exactly what she meant. I've always been an out-of-the-box thinker but since having Max, I have become uber-uber-uber-resourceful. Barb had a great story to tell:"Before Christmas, I was sitting on the floor with my son's wheelchair headrest in pieces, trying to rebuild it so that it would work bette [..] > read more

On wanting more, more, more speech progress. Because I'm greedy like that

Published on 2012-02-06 08:45:51

Max has been on a birthday kick lately. Ever since his own birthday, he thinks:1) Every day is his birthday. Also: 2) Every birthday party he goes to, he believes he deserves a candle and a round of "Happy Birthday To You."The second thing can get a little tricky. As for the daily birthday, I have to say, it's not a bad thing to go through life thinking every day is your birthday. Max also likes to pretend that he is 7 and Sabrina is 9, even though he knows full well he is 9. Saturday the kids w [..] > read more

Focusing on the can-do, not the can't

Published on 2011-07-05 20:30:28

The 2011 World Special Olympics held its closing ceremonies yesterday. A whopping 7500 athletes from 180 countries participated in the games. The awe-inspiring Kayla McKeon, who you met here, won a bronze in singles bocce and a silver in doubles. YES > read more

A day in Other Life

Published on 2011-07-04 22:25:22

Everything feels different with Max away at camp, and not just because he isn't physically here. I've never fully realized how much our life revolves around him. As we went about our very different day, he was always on my mind. Sabrina's, too, becau > read more

Max goes to camp, and misses some major excitement

Published on 2011-07-03 21:52:40

This afternoon, we dropped Max off at camp, where he'll be for a week. He seemed perfectly calm. Me, not so much. Right before we left, I heard something scratching inside the living room wall. Like some sort of creature. Unnerving, but I was too di > read more

Guest post: "Don't pity me—I'm onto you!"

Published on 2011-07-01 12:55:21

This guest post is from Tooner (her pen name), an adult with cerebral palsy who blogs at Accessibility in Canada. She emailed me to say disabilities awareness is her passion, and that she and her coworker like to talk about Max and how his life is go > read more

Guest post: Top 10 Reasons My Son's Cerebral Palsy Is Awesome

Published on 2011-06-30 07:46:24

This guest post is from Shasta over at Outrageous Fortune; she's mom to identical twins Malachi and Jaden, who just turned 1 (so wish them a happy birthday). The boys were born 10 weeks early. Jaden escaped serious trauma; Malachi had a brain hemorrh > read more

Tracy Morgan compares boys with disabilities to chimps. That's funny?

Published on 2011-06-28 21:03:01

Ever since I read about Tracy Morgan making fun of "retarded kids," I've been seething. Today my friend Theresa emailed me, and I got livid all over again. "I always thought this jerk was overrated. And unfunny," she wrote. "Now I know he's clueless > read more

Parenting kids with special needs: Supermodel Max (and other games I play)

Published on 2011-06-28 06:34:23

There's a little game I sometimes play in my head—let's call it "What will he be?" It's about what Max might grow up to do. Take the other morning. As I was rushing around getting ready for work, Max and Dave were playing baseball in our kitchen. D > read more

Done

Published on 2011-06-27 06:57:25

We are finally finished cleaning out my dad's place. It's been a heavy load, emotionally and physically. So much stuff in a two-bedroom apartment, so much discovered about him that I never knew, so much wrestling with grief and acceptance that I > read more

Stuff I learned at Type-A Parent...and one unforgettable woman

Published on 2011-06-25 21:32:01

I'm just back from the Type-A Parent Conference, where I spoke about getting freelance writing gigs (mostly having to do with my life as a magazine editor). I love this conference (props, Kelby!) because it's intimate, friendly, full of smart session > read more

Happiness secrets from the 1000 Awesome Things guy

Published on 2011-06-24 05:46:00

I don't remember how I first found out about the 1000 Awesome Things blog, but once I did, I was hooked. On days when I feel like I could easily write 1000 Crappy Things, I head on over there for a hit of happiness. The writer, Neil Pasrich > read more

Love this finger-painting idea (marshmallows involved)

Published on 2011-06-22 14:42:01

This stunning plate, created by Max, is remarkable for three reasons: • He painted it by himself, without any help from me. • Note the color—NOT PURPLE!!! Except for one little splotch in the middle! He made it for an orange-loving girl i > read more

A little way to help our kids feel really, really good

Published on 2011-06-21 14:53:36

I tend to think of Max as a kid who needs help: from me and Dave, from teachers, from therapists, even from Sabrina. His hand and arm muscles are impaired by the cerebral palsy; sometimes they're stiff, sometimes they're weak, so much so that gr > read more

Cape May, Congress Hall and relaxation, rediscovered

Published on 2011-06-20 19:47:12

If there's one thing that's lacking in my life, it's genuine relaxation. It's not just a matter of finding the time. It's just that ever since I had kids, it's been hard to lose myself in the pleasure of a moment. It takes a lot for me to sink i > read more

Worrying less is easy (if someone reminds you)

Published on 2011-06-19 21:50:46

It's early morning, and Max is standing outside his bedroom, at the foot of the staircase. He wants to go downstairs. I am in a towel, dripping wet from my shower. "Honey!" I shout to Dave, who's in the kitchen. "Max wants to come down!" Our stairs > read more

Why dads of kids with special needs rock

Published on 2011-06-16 21:18:39

In honor of Father's Day and fairness—because it's obviously not just we moms who rock—I asked guys around the blogosphere (and my blog-less husband) to explain their awesome-ness, in their own words. This is what they had to say. "I am not only > read more

Top 10 phrases I'll never program into Max's speech app

Published on 2011-06-15 22:16:51

1. "Got a light?"2. "Those jeans make your butt look big."3. "I'll take everything purple in this store. Charge it."4. "Hey, babe, wanna see my Lightning McQueen underwear?"5. "My mom can beat up your mom."6. "I like my scotch on the rocks, thanks."7 > read more

Meet an awesome Special Olympics athlete and her mom

Published on 2011-06-14 19:18:54

This is Kayla McKeon, a 23-year-old athlete who'll be headed to the Special Olympics World Summer Games in Athens—she's on the U.S. Bocce Ball team (the games start June 25). Kayla's participated in a number of sports in the Special Olympics: floor > read more

Stage fright

Published on 2011-06-13 20:03:00

Max recently had his spring concert. The week before, I got a promising email from his teacher: "I am happy to tell you that Max did a great job at the dress rehearsal. He waited in a quiet area as the other children sang and when it was our turn he > read more

Camp for kids with special needs: We made our decision!

Published on 2011-06-12 20:32:47

That camp for kids with special needs I was debating about? We all went to to the open house yesterday. I am sold. Max is sort of sold.Before we even went, I called the local police precinct to see if any complaints had been filed against the camp or > read more

Group therapy: How do you juggle all the doc and therapy appointments?

Published on 2011-06-11 08:09:55

One of the things that always amazes me about this blog is how much great advice I get, on everything from therapies for Max to how to get rid of groundhogs. I think there's lots more we can learn each other—like, how to get rid of squirrels and ma > read more

The untended garden

Published on 2011-06-09 23:04:40

The other night, I finally got around to looking at the vegetables we're growing. May was freaky busy, and I never found the time. But when I came home from work the other night, Dave was with the kids at the gym and I had a whole hour to myself. So > read more

"Mom, did ya have to take off the cast?!"

Published on 2011-06-08 23:10:04

The serial casting is going amazingly well (knock on plaster). Max is literally running around with his cast—and he is faster than ever. It's giving him good support, better than the inward-turning foot was. Another benefit is that the cast is a ve > read more

How to ask about my child with special needs

Published on 2011-06-08 09:21:14

The comments on yesterday's post were absolutely, positive awesome. I hope a whole lot of other parents out there (i.e., ones who don't have kids with special needs) read them and learn from them. Heck, I learned from them. Much wisdom there.An inter > read more

What moms of kids with special needs want other moms to know

Published on 2011-06-06 21:21:12

Please, stop staring—my son is not a freak. He is just a kid, even if he has some challenges your child doesn't. He may not notice you are staring, but I do, and it makes me uncomfortable and, at times, sad. Someday, my son may very well notice the > read more

Escape to Woodloch

Published on 2011-06-05 22:54:56

We are all about weekend getaways during the summer. Playing in the backyard, riding bikes and hanging at the pool is great, but there's nothing like a mini adventure. All four of us love road trips; it's in the kids' blood. Also, they know there is > read more

Max is just about ready for his driver's license

Published on 2011-06-04 21:51:25

Max has coveted one of those electric kiddie cars for months now. A little girl in our 'hood has one and Max hyperventilates whenever she motors by our house. Max can steer very well, I just wasn't sure he'd have the foot control for the gas pe > read more

Father's Day Giveaway: Win an iPhone or iPod case with your kid's photo

Published on 2011-06-02 20:30:00

I don't know about you, but one of the things that makes both me and Dave particularly happy in life is photos of the kids. Our 1910 colonial is decorated in Early Max and Early Sabrina—there are baby pics of them everywhere. I'd seriously consider > read more

Max gets a serial cast, I become Weenie Designer Mommy

Published on 2011-06-01 20:24:28

So, I'll admit, I was wigged out about the serial casting. Mostly because I was worried about how Max would handle it, but also because I've been generally anxious about his right foot. It's noticeably turning in. I'm full-blown scared the casting wo > read more

Parenting special needs: A few steps forward, a few steps back

Published on 2011-05-31 20:11:14

Like many parents of kids with cerebral palsy, I'm very focused on Max's physical and cognitive progress.The Botox shot in his right hand has done a nice job of loosening it up, and he's been spontaneously using it to lift more things. Score! The Bot > read more

Raising kids with special needs: The girl next door

Published on 2011-05-30 19:48:20

Summer's almost here, and I know it because A. is singing in her backyard. She lives next door to us and every year, she starts her solos around Memorial Day, usually in the early evening. I watch her from our back door. She stands beneath a giant oa > read more

Best giveaway ever, says Max: Win a $230 Cars 2 Road Trip Survival Kit

Published on 2011-05-26 20:00:01

Max likes me enough, but I sometimes can't compete with his affections for Lightning McQueen. He has loved that car, and the movie, since it came out. "Lightning McQueen" was the first two-word phrase Max ever said. We've worn down at least > read more

Those Special Needs Mom proud moments

Published on 2011-05-25 20:10:03

It's late Sunday afternoon, and we've just arrived at a diner with a bunch of family. We weren't sure Max would be into it; he's only been to this restaurant once before and he tends to only like familiar food places, and ones that aren't too loud.Ev > read more

Kids with special needs: It's not me, Mom, it's YOU!

Published on 2011-05-25 06:30:22

The other morning, Max and I were lazing out in bed, neither one of us wanting to start the day. He pointed to something out the window and said a word. I had no idea what he was saying. It sounded like "air-ay." "What did you say, Max?" I asked. > read more

A shocking video to get people to quit saying "retard"

Published on 2011-05-24 10:23:04

"I call my nieces retards and they love it. Retard is a term of endearment." That response to my little campaign against the use of the word "retard" on Twitter haunts me, along with other negative ones it received. The level of insensitivity and ig > read more

Stuff for kids with special needs: lots of good finds

Published on 2011-05-22 20:16:44

So, after worrying that I'd gotten too sucked into Special Needs World, what do I do? I spend the better part of a day at Abilities Expo, which is all about services for kids with special needs and gear for kids with special needs. No matter what sor > read more

Are we too sucked into Special Needs World?

Published on 2011-05-19 22:54:54

Tonight, I got unnerved when I saw a new comment on the post about Max and sleepaway camp. The very wise Gina, who blogs at Inky Ed, is all about inclusion; she mentioned sending Max to a camp for all kids, not just "special" ones. Her little boy, Ma > read more

Therapy and special needs: 11 ways to have a good relationship with your child's therapist

Published on 2011-05-18 14:50:52

1. When your therapist walks in the door, do not say "So glad you're here! Gotta go get a smoothie/a new pair of shoes/a life, see you in forty five minutes!"2. Have an annual or biannual Child State of the Union, a conference call between you and al > read more

Good times with my other special kid

Published on 2011-05-17 23:20:31

Max gets more attention than his little sis does. There's no denying it—he needs more one-on-one. And, yes, maybe I am guilty of sometimes cheering more loudly for him when he does something, because with Max, every little thing is a major victory. > read more

Sleepaway camp for kids with special needs: Should he stay or should he go?

Published on 2011-05-16 23:05:00

A couple of months ago, at a fundraiser for Max's school, I met a very cool mom who told me about a sleepaway camp for kids with special needs. (For privacy reasons, I'm not naming it now.) First thought: I don't think Max is ready for that. Second > read more

In the inner circle, there is no "weird"

Published on 2011-05-15 23:05:00

Friday, I was filling out a form for a program I was taking Max to the next morning, sponsored by the local ARC. The kids play games, do crafts, have lunch, hang out. Name: Max Nickname: Spaghetti Sauce Max Child likes: Best friend = Caleb, spaghett > read more

Sports for kids with special needs, take 2 (thank you, Blogger)

Published on 2011-05-15 20:21:38

Due to the Blogger blackout, I lost all those wonderful and helpful comments you guys first left on the post about sports for kids with special needs. The comments are floating out there in cyberspace, along with all the missing socks from the laund > read more

BLOGGER, PLEASE GIVE ME BACK MY ORIGINAL WEDNESDAY POST!!!

Published on 2011-05-13 18:56:44

Blogger has taken hostage my post on Sports For Kids With Special Needs. Please amuse yourselves in the meantime. > read more

Love That Sabrina

Published on 2011-05-13 13:01:47

> read more

Sports for kids with special needs: a home run

Published on 2011-05-11 20:17:16

Here's Max on opening day for his Little League Challenger Division, a local softball team we joined a few years ago. He's looking pretty sporty there, right? Sports for children with special needs: YEAH!Except... the gate was as far as we got that d > read more

I'm not an expert, though I play one in real life

Published on 2011-05-10 22:39:22

So, Max is all Botoxed up, and it's taken ten years off his face. Ha, ha. That would make him minus 2 years old. It'll be a few days before we see how much the injection loosens his right hand (particularly his thumb, which he tends to hold in as it' > read more

Cerebral palsy is a sneaky demon

Published on 2011-05-09 21:04:23

Sometimes, I forget all about the cerebral palsy. It's not hard to, because Max is such a happy kid. Sometimes, it blindsides me, as it has recently—and shatters my calm about being mom to a kid with disabilities.It started a couple of months ago, > read more

I've got a Mother's Day hangover

Published on 2011-05-08 22:06:55

Mother's Day isn't even over and I'm already bummed about returning to reality. Today, I was on the mellow side. I had stuff on my mind; Max's cerebral palsy is causing some trouble (more on that tomorrow), and I also kept thinking about my dad. My > read more

20 More Reasons Moms Of Kids With Special Needs Rock

Published on 2011-05-06 11:15:45

What, you thought there were only 20 Reasons Moms Of Kids With Special Needs Rock? As if! I adapted several of the below from the amazing comments on last year's post. Rock on, mamas!* * * * * 20 MORE REASONS MOMS OF KIDS WITH SPECIAL NEEDS ROCK1. Be > read more

Win a $75 shopping spree from Jockey: Easy Week giveaway

Published on 2011-05-05 16:06:25

I am not sure how I existed before the invention of yoga pants. I live in them, even sleep in them sometimes. If I could swim in them, I would. (Note, however, I did not get married in yoga pants.) The Relaxed Crop ones from Jockey are my fave > read more

What kind of thanks would you like on Mother's Day?

Published on 2011-05-05 11:07:07

Like any mother, my love for my children is unconditional. I do not expect anything in return from them, although I can never get enough smiles, kisses, or the gleeful sounds they make when I walk in the door at night. I would certainly not mind if e > read more

Win a $140 iPad/iPhone/iPod alarm clock radio/charger: Easy Week giveaway

Published on 2011-05-04 19:04:56

I usually hate alarm clocks, because they make me get out of bed in the morning way before I'm ready to. But the iD85 App-enhanced Dual Alarm Clock Radio from iHome makes the task a lot easier. You can play your iPad, iPHone or iPod, charge it, and w > read more

Win a $75 gift card from Schwan's food delivery: Easy Week giveaway

Published on 2011-05-04 18:38:48

This is the way dinner goes at our house during weekdays:Since I don't get home till 7 from work, the babysitter feeds the kids. I hate not having family dinner but at this stage in life, eating at 7 is late for Max and Sabrina (they are ready to cra > read more

Win a chic desktop planner from momAgenda: Easy Week giveaway

Published on 2011-05-03 21:26:58

Some of you may recall that I am a paper planner kind of girl: I like being able to flip through my life, at a glance. If you are that girl, too, then you'll dig the new Desktop Planners from momAgenda, which run from August 2011 through December 201 > read more

Who's your mentor mom?

Published on 2011-05-03 14:05:11

As visions of cute cards, breakfast in bed and other Mother's Day perks start dancing in our heads, here's something also worth thinking about: the mothers in other countries who don't have it as good as we do. Fact: 67 percent of the world's HIV po > read more

Win a Height Right highchair that grows with your child: Easy Week giveaway

Published on 2011-05-02 23:22:04

Back when Max started sitting at our kitchen table for meals, we had trouble finding a chair that gave good support. The Height Right Chair from Special Tomato was a godsend. It's comfy, there's a belt and foot rest that stabilize him, and it looks l > read more

Win a $250 shopping spree from Gilt Groupe: Easy Week Giveaway!

Published on 2011-05-02 08:46:04

Welcome to Easy Week, five days filled with giveaways that will make your life easier. Starting with...online shopping! I think there is a good chance my kids would be running around half naked if it weren't possible for me to buy them stuff at 11:30 > read more

What makes weekends easier for you?

Published on 2011-04-29 21:27:11

Weekdays are usually a blur of work, homework, chores, bath, bedtime, blah, blah, blah. So I try to max out our weekends by doing as little work as possible. I typically stay up late on weeknights to hit stores and do laundry, and don't bother to pic > read more

Max loves his routines. Do your kids?

Published on 2011-04-28 22:17:49

The scene: Cold Stone Creamery, every time we go.Dave: "Max, how many milk shakes do you want?"Max: "OOOOOOH!" [TWOOOOOOO!"]We order one milk shake and ask the counterperson to put it into two cups. Max finishes 'em both off.The scene: Max's room at > read more

Non-Disney stuff to do in Orlando (apologies, Mickey)

Published on 2011-04-27 21:26:17

Yes, I'm still catching up from our trip to Orlando, where we did everything not Disney. The kids love Disney but Orlando has many other charms besides Mickey and crew.Nissan lent us a Rogue to get around, a CUV that's perfect for vacation—it gets > read more

CaddyMax

Published on 2011-04-27 02:24:19

This is our new groundhog. He showed up a few weeks ago. Until now he's been camera shy, or maybe it's that Max pounds on the dining room doors and screeches whenever he spots him roaming around the backyard. Max is our Groundhog First Alert system.H > read more

Things that make you lose it (and you're not sure why)

Published on 2011-04-25 21:48:03

Tonight, I got home from work and decided to flip through the kids' baby albums with them at bedtime. They are getting big, fast, and I felt like reminiscing about their babyhoods. The three of us cuddled on Sabrina's bed, and first we looked at her > read more

How other kids treat kids with special needs: It starts with the parents

Published on 2011-04-24 22:02:07

Something amazing has been happening on our block this spring. Max is playing with other kids. I mean, really playing and hanging out with them. And they are doing it right back. There are bike races and swinging and running around and giggling. (The > read more

A free speech app, Lady Gaga's sorry about saying "retarded" and other stuff worth knowing about (4/23 edition)

Published on 2011-04-22 23:35:43

• In one of those amazing life coincidences, I met a dad the other night through my friend Wendy whose friend has a child with autism. That friend is working on a revolutionary speech app, Xalts (he explains it in the above video). It's an open so > read more

It's B Kind 2 Earth Day...Help Mom Earth! She Doesn't Have Her Own Blog!

Published on 2011-04-21 22:08:49

It's overwhelming, isn't it, to think of all the help our planet needs. What difference can one mom or two mom or a hundred moms make? A lot. It starts with one. Plus one plus one plus one. And suddenly, we're making a difference. Consider this: > read more

Helping kids with special needs fit in: I did not buy the purple Crocs

Published on 2011-04-20 21:32:01

I stopped in my tracks in Target. "Whoa!" I said, though I was by myself. Right there in front of me, hanging from a display: a cluster of purple Crocs. Gloriously purple Crocs. Max nirvana. I stooped down, looked for his size, dropped the > read more

Dear staffers at the pediatrician's office: pleas from a parent

Published on 2011-04-19 22:29:37

Dear staffers at the pediatrician's office, First off, thank you for keeping my children healthy, vaccinated and lollipop-licious. I am genuinely amazed by how calm you remain in the face of bawling, screaming kids. Is there some special anti-freako > read more

Top books for kids in Early Intervention

Published on 2011-04-18 22:07:06

I follow several speech language pathologists on Twitter, and last night a bunch of them had a discussion about suggested reading books for Early Intervention. Here, their picks. There are some Max and Sabrina faves, one I loved from my own childhood > read more

Special needs mommy guilt: dissed Tooth Fairy edition

Published on 2011-04-17 23:39:21

If you're a mom, you may feel guilty about your parenting from time to time. If you're a mom of a kid with special needs, you may feel a whole other level of guilt about your parenting. Like the Guilt 2.0 I just experienced at the Mom 2.0 conference > read more

Finding joy in New Orleans (and my inner Bob Vila)

Published on 2011-04-17 10:51:38

Untangling jump ropes and banging down the nail that keeps popping up on our stairs is about as handy as I get around the house. But who knows what will happen now that I have become a pro driller.This life-changing event happened in New Orleans yest > read more

Raising kids with special needs and talking about "different"

Published on 2011-04-14 21:30:00

This guest post is from Jenna, who blogs at Resonance. She is a mom of four young kids, a ball of energy, and an advocate for kids with special needs. My daughter mentioned to me recently that a boy in her class wears an insulin pump. She saw > read more

Cheerleaders with disabilities: GOOOOOOOO team!

Published on 2011-04-13 21:42:49

Pretty and perky: That's the typical cheerleader for you. Add "disabled," and you've described the girls in squads created through The Sparkle Effect. It's a national organization that encourages teens to include students with disabilities—includin > read more

An inspiring video for kids with special needs

Published on 2011-04-12 23:05:30

Loving this video, Pure Soul by DeScribe—with Matisyahu and performers of all different religions—about compassion."Every single person in this world is a gem": That much, we know, as parents of children with special needs. Wouldn't it be amazing > read more

The joys of the late-blooming child

Published on 2011-04-12 21:48:38

This week, a few daffodils finally sprang up. They came a little late this spring or maybe it just feels that way because I'd been so impatient for them after the hell winter we'd been through. When you've been looking at dormant ground, you apprecia > read more

Children with special needs and speech: "That stinks!" says Max

Published on 2011-04-11 23:44:53

"I think he's going to have speech. He'll sound like a deaf person." That's Max's neurologist talking, about six years ago. I'd asked if he thought Max would ever be able to talk; at that point, Max had very few sounds and no words.The doctor's predi > read more

Is it wrong to blog about your child with special needs? I say no. Ahem.

Published on 2011-04-10 21:33:36

Blogging about your kids is one thing. Blogging about a child who is not aware that you have a blog because he has special needs is a whole other thing. Biggest question of all: Are you endangering your child? On Friday's post about smartphones and > read more

Mom Goodies Giveaway: Win a $100 Wish-Bone gift basket (and a new waistline)

Published on 2011-04-09 21:53:45

Have you been thinking about summer? I have. Specifically, I have been envisioning getting into a bathing suit. And feeling a little wistful that the snowstorms and 9 degree days are gone, because now there's just no getting out of the bathing suit t > read more

Keeping kids safe from online creeps: one thing you can do right now

Published on 2011-04-08 15:54:07

My husband's friend forwarded him this news segment today. It's about how creeps can track down your child's location via embedded info in photos taken with smartphones, pics that get emailed or uploaded to the Web. The report seems somewhat sensati > read more

Best exercises for lazy ladies

Published on 2011-04-07 21:39:00

I am not big on exercise, which is one reason I am not getting any smaller. Once in a while I'll take a Zumba class; it's mildly fun and highly entertaining because of several middle-aged men in the class. I suspect my so-called moves are highly ente > read more

Small kindnesses people do for your child: Ever feel weird about them?

Published on 2011-04-06 23:03:20

A couple of months ago, I bought a few yards of purple fabric and purple terrycloth so I could get some bibs made for Max. The drooling situation has not improved. It's because he has a lot of tension in his jaw; the drool pools and flows. (That soun > read more

The day you clean out your dad's place

Published on 2011-04-05 20:56:06

This morning, we started cleaning out my dad's apartment. I haven't been there since the last time I saw him.The finality of his death hit me the second I walked in the door. It hit me when I touched his slippers by the bed, when I saw the recliner c > read more

There is always laughter

Published on 2011-04-04 21:42:47

Max is one month old. I cry a lot—in the shower, in the car, in bed in the middle of the night as Max sleeps beside me. I am surprised I still have any tears left. One night, Dave makes up a song: "Max makes big doooodies!" It is a ridiculous song, > read more

The care our kids will get when they're adults

Published on 2011-04-03 20:19:22

So, that meeting I'd mentioned to you back in January about planning for the future for children with special needs, the one I needed my big-girl panties for, got postponed because of snow. The rescheduled meeting took place the week my dad died > read more

My other sibling was a car

Published on 2011-04-01 21:00:01

I've been doing a lot of cleaning up around the house this past week. It's part therapeutic, part prep for the task I'll be undertaking next week: Cleaning up my dad's place. I'm dreading it. I'll be with my sister and mom, though, so I'm hoping it w > read more

10 things to love about Club Med Sandpiper

Published on 2011-03-31 23:37:49

Back when I was single, I'd visited a couple of Club Meds—Turks & Caicos and Martinique—and had a memorable time (and some of it not so memorable, thank you, pina coladas). So I was glad when Club Med Sandpiper in Port St. Lucie invited me a > read more

Special needs parenting: When your kid bugs people

Published on 2011-03-30 23:13:26

A scene from our flight to Florida (picture a completely filled plane):Max is in the window seat, Dave is next to him, then Sabrina; I am in the row across from them. Suddenly, I notice that Max is repeatedly and rhythmically kicking the seat in fron > read more

A little slice of fantasy life

Published on 2011-03-29 22:01:42

I don't spend much time fantasizing about the high life—I'm way too busy with real life—although I do have some go-to basics: a fancy home, my own chef, cruising down a highway in a convertible (while my hair still manages to look good). Despit > read more

Florida's best entertainment (take that, Disney)!

Published on 2011-03-28 23:02:00

Florida was quite the escape. And not just because my spirits needed lifting and it was pleasantly warm and sunny and we did a lot of great activities (more on that later this week). The actual best form of entertainment—and distraction—wer > read more

Sabrina sings Thomas to Max

Published on 2011-03-27 23:10:00

I mentioned recently that Sabrina's been doing this impression of Sir Topham Hatt that cracks us up, especially Max. She did it all vacation and here she is, caught on tape. I love how she has no clue whatsoever what the song's actual words are. She > read more

Cerebral palsy is not my child: In honor of Cerebral Palsy Awareness Day 2011

Published on 2011-03-25 23:08:00

My child with cerebral palsy is not the same as another kid with cerebral palsy; the condition isn't one size fits all. There are various types. Even within the same type, it affects every kid (and adult) differently.My child with cerebral palsy is n > read more

How are you helping with Japan?

Published on 2011-03-25 03:04:00

I'm wide awake in the middle of the night (insomnia) reading up on Japan, and it's horrifying. The official death toll has exceeded 10,000, and who knows how much higher it will go. Meanwhile, Tokyo is saying that levels of radioactive iodine in the > read more

Clothes for kids with special needs: What are you waiting for, Prada?

Published on 2011-03-23 22:25:01

This guest post is from Joanna Dreifus, who writes My Mom Shops. She lives in NYC with her two kids and is on the Board of YAI's New York League for Early Learning. She is all kinds of awesome. One recent afternoon, I showed my 7-year-old daughter a > read more

Meet a therapy dog (and feel free to pet him)

Published on 2011-03-22 22:00:05

This guest post is from a local pal, Kristen Ryan. She is The Official Vacation Pet Sitter of Puppy, our fish, and even made a house call to pick him up when I couldn't find a minute to drop him off. She is a Good Person. She blogs about her adv > read more

An interview with the author of Welcome To Holland

Published on 2011-03-20 23:01:05

A few months ago, I asked if you had any questions for Emily Perl Kingsley, the author of Welcome To Holland. That's the essay she wrote in 1987, that one that so many parents of kids with special needs have read. Emily's son has Down syndrome; > read more

Running away

Published on 2011-03-19 15:29:41

Running away is typically not a good idea, but this time I made an exception.I’d been invited to a couple of events in Florida (more on that when I’m back) and planned a vacation around them. The kids were super-excited.Then my dad died. I was ca > read more

A boy and his real-imaginary friend

Published on 2011-03-17 22:21:08

We never did get Max’s name legally changed to Purple Max, or Purple Car Wash Spaghetti Max, which is just as well because he has a new name: Max and Caleb. Caleb is a kid in Max’s class, some of you may recall. Like a longtime married couple, > read more

Max...Unplugged

Published on 2011-03-16 23:58:36

> read more

Kissing away the grief

Published on 2011-03-15 11:03:24

I have been in kiss overdrive these last few days. All I want to do is kiss Max and Sabrina, hold them, and hug them. Dave, too, but even more so the kids. It's been the most comforting thing to me. Whenever I've gotten sad over the years about what > read more

Max pays his respects

Published on 2011-03-13 23:05:00

The weekend was filled with people coming to our house to pay their respects. Friends and family trickled in and out, and it was comforting to have them around. Sabrina knew people were visiting because Zadie had died, and kept asking her questions > read more

Questions kids ask about death

Published on 2011-03-11 21:57:32

I wasn't sure what to say to Sabrina and Max about my dad's death; I didn't know what they would understand. So I kept it really simple. I spoke with Sabrina first. "I'm sad today, honey," I said to her after dinner the other day. She wanted to > read more

In memoriam: for my dad, who loved a good laugh

Published on 2011-03-10 17:35:01

One of the things that makes it easier when someone you love dies is thinking about stuff you used to laugh over together. My dad had an excellent sense of the absurd. Today, I was remembering when my Uncle Sidney passed years ago. As we left t > read more

The call that you get at 4:45 a.m., the one about your dad

Published on 2011-03-08 20:26:09

The phone rang at 4:45 a.m. this morning; I saw my mom's number on Caller ID and I knew. "Ellen, Daddy passed away in his sleep," she said. Max was in our bed; he heard my sobs, shook his head to say "Please don't be sad" and covered my face with kis > read more

Let's hear it for strange!

Published on 2011-03-08 04:36:10

For the last few months, Max has been sleeping with a bowl, a plate and a cup in his bed. Purple, of course. This is a kid who's never had an attachment to teddy bears, blankies or any of that stuff. No, my son likes to canoodle with tableware.The pu > read more

Fear of seizures: This time, the boogeyman laughed at me

Published on 2011-03-06 23:03:00

Friday night, Max showed up at our bed in the middle of the night, as he's been doing for months now. We definitely need to do something about it, but my willpower is weak at 2:00 a.m. and Dave doesn't even wake up. What I'd like is a bouncer who can > read more

If you tick off a lot of people by asking them not to use the word "retard"

Published on 2011-03-05 04:43:55

Wednesday's post about the r-word got such a great response here (check out the comments if you haven't). And it triggered good discussions with friends, including one who said I'd emboldened her to request that people not use the word, along with a > read more

Meet the mom of the guy who won Oprah Your Own Show

Published on 2011-03-04 00:46:54

This week, I got a chance to talk with Susan Anner, mom to Zach—one of the winners of Oprah's Your Own Show competition. I've been crushing on the guy since I saw his Oprah audition tape, where he joked about having "The sexiest of the palsies" (li > read more

Getting people to treat kids with disabilities like kids first

Published on 2011-03-02 23:32:39

I am drained, ecstatic and overcaffeinated tonight—the reaction that post got was incredible. It was the antidote to the Twitter venom. Believe me, naysayers, I realize that one Twitter outreach project and one gigantic traffic explosion and a whol > read more

If you ask people to not use the word "retard"

Published on 2011-03-01 23:23:52

Let's say you have a child with disabilities who has cognitive delays, and when people jokingly uses the word "retard" to call someone stupid, it bothers you.Let's say that in honor of Spread The Word To End The Word day, which is today, you decide t > read more

Max makes up for lost naughty time

Published on 2011-02-28 23:01:00

Saturday, Max was determined to be b-a-d. It wasn't a full moon or anything, and so I decided he was making up for lost time. He's never had that terrible twos or threes or even fours stage; his hands, body and mind weren't up to it. Weirdly en > read more

On doing the good that you can do

Published on 2011-02-28 00:21:00

Saturday night, Dave and I capped off our sushi date with a trip to the AT&T store, because we are nuts that way. I'd mentioned that I was thinking of giving up my BlackBerry, and he couldn't wait to check out iPhones. We bought one, and I'll be > read more

Oprah Your Own Show: the winner who could change our kids' lives

Published on 2011-02-26 21:49:55

Question: "What do you think is the biggest misconception about people with disabilities?"Answer: "That they're helpless, and that their personalities are defined by their disabilities. I am so many things before I am a person in the wheelchair. Get > read more

Stuff Worth Knowing About: 2/26 edition (now with more free iPads)

Published on 2011-02-26 07:38:51

* Marissa's dad, Mike, is giving away five iPads to kids with special needs over at Marissa's Bunny. It's in celebration of the foundation he's launching to support kids with disabilities (his sweet girl, Marissa, has infantile spasms). Mike's b > read more

On convincing people that, yes, your kid with special needs is content

Published on 2011-02-24 23:15:01

I'm on a train going home the other day and a guy sits down in the seat opposite me. We end up talking and it turns out we have a mutual friend. He asks where the kids go to school, and I tell him. He's never heard of Max's school, and I explain it's > read more

Special needs parenting: Sometimes, I think about normal

Published on 2011-02-23 23:10:00

We're in the car riding home from our trip to Philly, where we took a weirdly large number of pictures in front of a stuffed gorilla display. Playing on the DVD: Thomas the Tank, which has been on for an hour straight. Some might consider that a > read more

Books for kids with special needs: what's encouraging Max to read

Published on 2011-02-22 23:04:01

Choosing books for children with special needs can be tricky. I've found it hard to know what the right level of book is for Max—it can't be too wordy, but board books are too baby-ish. Lately he's into Thomas the Tank Engine, the reading of which > read more

Road Trip: Philadelphia!

Published on 2011-02-21 23:12:39

Road trip to Philadelphia? Bring it on! We're at the point where it's getting easier to travel with the kids, especially because Max is less fearful of new places. "IH OH-HEL" ("big hotel") are two of his favorite words. And so, we headed to Philly f > read more

The good you can do online today: Help feed kids in need

Published on 2011-02-21 08:25:52

This is a picture of Max's breakfast today, in our room at the Loews Hotel in Philly (bad cabin fever = impromptu road trip). Not a remarkable breakfast, really (he has oatmeal every single day, and blueberry yogurt on occasion), except that I just p > read more

Max steps out of his comfort zone (and likes it)

Published on 2011-02-18 06:43:14

This is Max's table setting. It's a perma-fixture on our kitchen table; he wants it there all the time. He keeps a matching purple bowl and plate on his bed. He sleeps with them at night, and makes sure they're aligned just so. Max likes the familia > read more

Max's audition video for American Idol/Dancing With The Stars

Published on 2011-02-16 20:59:57

I don't know where Max picked up these moves or what he's singing, but I love it. Oh, and remember how I once mentioned he has the most awesome way of saying "Yes"—it sounds like "Yeee-ah"? You can hear it here. I could listen to Max saying "Yeee- > read more

Experts for children with special needs: that would be us

Published on 2011-02-15 21:30:21

Like me, I'm sure you have your own team of experts for children with special needs. Like me, I'm sure at this point you could qualify as an expert. This is on my mind because today I read a fascinating New Yorker article, The Hot Spotters, th > read more

Explaining special needs to a sibling

Published on 2011-02-15 06:15:25

The conversations have been happening at bedtime, when Sabrina tends to get chatty. Last night, she told me she saw a Friendship Circle sticker on a kid's car at school. It's a national group that offers programs for kids with special needs; Max goes > read more

Valentine's recipe for time-crazed parents

Published on 2011-02-14 20:42:41

Take one insanely busy Monday.Add a heart-shaped pot someone gave you when you got married. Dust it off, as it hasn't been out of the cabinet for several years. Ponder how a lasagna is going to fit in there.Spend 5 minutes sitting on the kitchen floo > read more

Happy Valentine's Day: What have you done for you lately?

Published on 2011-02-13 19:05:12

Good times: We had ourselves a Valentine's weekend. Dave and the kids got me roses. Tomorrow, they'll get cards, candy hearts and heart-shaped lasagna. Max made me a gigantic card (in purple, naturally). He wouldn't let me touch it. We all went > read more

One of the best things I've ever read

Published on 2011-02-10 22:39:18

Our babysitter's daughter, a wonderful girl who's in high school, got an assignment to write an essay about someone who's beaten the odds. Guess who she wrote about? I was really touched. I know Max has overcome so much, but it's amazing to hear from > read more

When doctors tell you scary things...and they are WRONG. A cautionary tale.

Published on 2011-02-09 22:43:27

I wasn't ever going to tell you this. I was kind of embarrassed. And scared. But I'm going to, because I think there's something to be learned from what happened to me today.Back in December, I went for a much-needed physical. I hadn't gotten one in > read more

Mom job hazards that do not cause death (trust me on this)

Published on 2011-02-08 23:41:01

• Running out of the house with sopping wet hair in the dead of winter.• Being forced to repeatedly watch The Wiggles/SpongeBob SquarePants/iCarly/[insert your child's current TV obsession here]• Also: reading the same book for 372 bedtimes.• > read more

Potty training and special needs: S.O.S.

Published on 2011-02-07 21:08:56

Last weekend, Max and I sat down at the computer and ordered a purple-covered notebook and purple smiley-face stickers. I needed a new way to motivate him to potty train. They arrived on Saturday.Max immediately wanted to put one in the book. "Nope, > read more

Sabrina's 6th birthday party: "Awesome!"

Published on 2011-02-06 22:06:41

Birthday Girl decided to dress for the occasion in her usual outfit of choice: one short sleeve t-shirt, one pair of Max's pants. Sabrina had plenty of energy left, despite the birthday party she'd been to right before hers. I was never able to do a > read more

Stuff Worth Knowing About: 2/5 edition

Published on 2011-02-05 16:12:36

* Poverty affects 1 in 5 kids in our country, up from 1 in 6 a few years ago. Scary. Sometimes, it's hard getting kids to understand what it means to help other kids—but small gestures can be meaningful. Save The Children ran a Valentine's card con > read more

Special needs and allergies: Advice from a celeb mom who knows

Published on 2011-02-04 22:45:22

Having a kid with special needs: challenging. Having a kid with special needs who also has allergies: extra-challenging. Especially when your child isn't able to verbalize said allergies. I've got allergies on the brain this week because I got to pa > read more

Valentine's jewelry giveaway for you

Published on 2011-02-03 22:05:33

When I was growing up, lots of moms had necklaces with those gold girl and boy doll charms. I always wondered why my mom never got one, which could explain the years of therapy.Just so you don't give your kids a complex, you could score one of these > read more

When do you stop comparing your kid to other kids?

Published on 2011-02-02 20:55:01

Max at 22 months, with a friend "Marley will be a year next week," Crystal recently wrote to me. Her little girl has Rhizomelic Chondrodysplasia Punctata (RDCP), and has been through multiple surgeries. Crystal gave me permission to share part of her > read more

Music therapy and a song for Max: a video you won't find on MTV

Published on 2011-02-01 22:14:12

Max's music therapist, Joanne (who continues to look and sound like a Disney princess) surprised me with this video of a song she'd made up for Max (who continues to be obsessed with his bff Caleb and purple). I do believe Max has a future as as a ba > read more

Meet our new Puppy

Published on 2011-01-31 22:36:19

While I was at the Blissdom Conference, the kids acquired a fish. Not quite the addition to the family I'd been dreaming of while I was away, but still, a thrill. A Siamese Fighting Fish is far less of a shock to come home to than a dog, which is wh > read more

Should we have a third child, continued: I got pregnant at Blissdom

Published on 2011-01-30 23:11:46

OK, I didn't really get pregnant at Blissdom, as there wouldn't have been time and besides, Mrs Chicken was my roommate. But that urge to have a third child was so strong my ovaries were throbbing. I literally tried to pick up every single baby who c > read more

Special needs, tears and laughter at Blissdom

Published on 2011-01-29 16:22:52

Greetings, y'all, from Nashville, where I've been ensconced in Planet Opryland (also known as the Gaylord Opryland Hotel) since Tuesday night, for the Blissdom Conference. There are about 600 bloggers here, most of them of the mom blogger variety. It > read more

Top 10 Hazards Of Being A Mom Blogger (post rewind)

Published on 2011-01-26 22:10:00

Hello, peoples. I'm in Nashville, sucked into the Blissdom Conference, so I'm sharing a relevant favorite post from the past. Top 10 Hazards Of Being A Mom Blogger 1. Being called a "mom blogger." 2. Husband thinks you are neglecting him and the ki > read more

Kids With Special Needs Around The World: Ireland

Published on 2011-01-25 23:38:36

I recently met Jen on Twitter; she's from Dublin, Ireland, and is a mom to three kids, one of whom has autism. She describes herself as "wife, taxi service, blogger, internet addict, head cook and chief bottle washer." Jen works part-time for Irish A > read more

Raising kids with special needs: mushball vs. tough-love parenting

Published on 2011-01-24 21:35:51

There are times when I feel at a loss about how to handle certain special-needs situations, like on Saturday, when I found out kids had been mean to Max. (Thanks again, everyone, for the support and advice). And then there are times when I'm complete > read more

Siblings with disabilities: Her brother's keeper

Published on 2011-01-23 21:02:13

I had a roller coaster kind of Saturday, the kind of day where you're both happy and despondent about your child.Saturday afternoon, Max and I took a bunch of purple bandanas (there they are above) and two yards of purple terrycloth (thanks, fabric.c > read more

Giveaway: Yo Kids

Published on 2011-01-23 11:44:25

We eat a lot of yogurt in this house; the kids think it's a treat, even though it healthy (please, nobody tell them). Sabrina would down the entire eight-pack of Squeezers at once if I let her. We do the YoKids kind, which is organic.The Yo peeps hav > read more

Parenting kids with special needs: the best medicine

Published on 2011-01-22 10:12:01

Last night, I had the silliest night I've had in awhile. A neighbor invited me to a game night she regularly has with a group of women. I basically didn't stop laughing for three hours straight. We snacked on various desserts (butterscotch Rice Kris > read more

The Insanely Simplified Guide To The Blissdom Conference

Published on 2011-01-20 23:10:07

Next week, I'm headed to Nashville to speak at the Blissdom Conference. I'll be talking about harnessing social media for social good with some amazing women, doing a professional writing workshop with yet more amazing women, serving as the special n > read more

Bringing up kids with special needs (and driving in the dark)

Published on 2011-01-19 23:57:36

Tonight I was driving on the highway, enjoying the ride. Dave is usually at the wheel on weekends, and mostly I'm home weekday nights with the kids, but every once in a while I'll slip out after they're asleep to do errands. There is something incred > read more

25 Things That Make Special Needs Parenting Easier

Published on 2011-01-18 21:36:42

1. Your child's smile.2. Being unafraid to say "no." As in, "No, twice a week of speech therapy is not enough" and "No, I don't think my child can handle that" and "No, I am not Angelina Jolie, though I do bear a striking resemblance to her, I know." > read more

Two kinds of milestones, all kinds of amazing

Published on 2011-01-17 20:47:49

Sabrina walked into my bedroom this morning with an armful of Pull-Ups and announced that she was done wearing them at night."Are you sure?" I asked. When we were at the doctor a few weeks ago for her annual checkup, I'd asked if it was OK that she w > read more

We are so married (and other updates)

Published on 2011-01-16 18:03:42

As you can see, Dave and I got each other the same exact cards for our anniversary. This can only mean one thing: We are SO married. Also, we are both the types to reach for the biggest cards at the card store. Hmmm.Dave's present was carted away (al > read more

I got my husband a squirrel for our 10th anniversary

Published on 2011-01-13 21:42:31

A squirrel (not necessarily alive) most definitely isn't what Dave is expecting as a 10th wedding anniversary present. But, surprise! It arrived this morning. I'm not sure how it got here, though it definitely didn't come from Zappos, like the majori > read more

He's on the charts, and I don't care

Published on 2011-01-12 20:54:15

For the last year, I've been trying to fatten Max up. OK, not make him a porker or anything; it's actually good for a kid with cerebral palsy to be light on his feet. And because I still have to pick him up on occasion—to help him up stairs, or to > read more

Wordless Wednesday: Playing doctor

Published on 2011-01-11 22:02:00

> read more

The shooting of Rep. Gabrielle Giffords and the crapshoot of brain damage

Published on 2011-01-10 19:49:26

When I first heard Rep. Gabrielle Giffords had been shot in the head, I was shocked and saddened. How could this have happened? Why? Whywhywhy? Next thought: I wonder what kind of brain damage she'll have. I hope it's not too devastating. As of toda > read more

Breakthrough weekend: this is what's encouraging Max to talk

Published on 2011-01-09 19:50:00

It started Saturday morning. The bathroom on our ground floor was on the verge of being condemned by the Department of Health, and since it's not a self-cleaning kind and Dave is not a self-cleaning husband, something needed to be done. "Mommy's > read more

Mommy crap that erodes my brain

Published on 2011-01-08 09:43:14

We got an invite the other day for a birthday party for a kid in Sabrina's class. February 6, at 1:00 at a local gym. Hmm. Why was the date so familiar? Oh. Because it was the same day as Sabrina's party. At the same gym. At 3:00. Organized Mom had g > read more

A boy and his ur-ul balloons

Published on 2011-01-06 22:11:11

Eight years into being Max's parents, we still go overboard with the toys, games, books, whatever. OK, we're that way with Sabrina, too, but there's more pressure on getting Max stuff that will encourage him to use his hands and his mind. Of course, > read more

The other man in my life

Published on 2011-01-05 21:47:46

My dad celebrated a birthday today (some of you may remember him as the man with the ganja hat). I called him at home, hoping hard that he'd know who I was. So far, he hasn't forgotten, but it's possible. He has a slow-progressing yet debilitating di > read more

The f-word for parents of kids with special needs

Published on 2011-01-04 22:35:44

Today, I got an email that I couldn't stop thinking about all day long. It was from a mom on an e-loop I'm part of; she's been lobbying on behalf of special needs families for years, and she invited us to attend a meeting happening next week. It's ab > read more

The perils of a know-it-all sister

Published on 2011-01-03 23:10:00

Max has been doing great with his sight words. His teacher sent home a batch printed on index cards, and when we read books and the words come up Max points to the card and says the word. Sabrina grabbed the index cards the other day and started tes > read more

The power of progress, no matter what kind

Published on 2011-01-02 23:11:32

We were at our friends' house for New Year's Eve. This is a couple we see maybe a couple of times a year, and they always notice the progress Max is making. "He's talking so much more!" Dawne said. "And his walking is great!" I'm always thrilled to > read more

What was your favorite post of 2010?

Published on 2011-01-01 17:44:02

I've shared several of my favorite posts of the year, and I'd love to read ones you've written! Just write the title of your post where it says "Your name" and cut and paste the link to the post where it says "Your URL." Once you've posted, leave a c > read more

The Love That Max Year In Review (2010)

Published on 2010-12-31 21:58:03

In January, I made peace with Max's purple obsession. In February, Max entertained himself. In March, on Cerebral Palsy Awareness Day, I told the world that Max is not a tragedy. In April, I celebrated the sisterhood of the special needs chil > read more