The Special Needs Blogger Link-up is your friend

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Extra-thick hot chocolate kids can spoon up

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

An Apple store staffer helps a kid with special needs: Nice, but....

Last week, Nashville mom LynnMarie Rink took her 9-year-old, James, to an Apple store. James has Down syndrome and autism; he uses an iPad as a learning tool, and they were picking up a new one. At some point, James tried to dash out of the store into the mall but instead crashed into a glass wall and fell to the floor. An Apple staffer came over and asked if there was anything he could do. At LynnMarie's request, he got the iPad, sat down next to James and set it up.

LynnMarie posted a thank you note to Apple on her Facebook page, ending it with #BeKindToOneAnother. Elsewhere on her page, she noted how lucky they were for the kindness.

A friend's sister shared the post, which has gone viral. "It got me in the feels," Sheryl said. Me, too. As the mom of a kid with special needs, I appreciate stories like this. But it also gave me a case of the what-ifs. I'll break it down:

What if our children were regularly on the receiving end of such understanding? Then parents wouldn't feel the need to effusively thank people, and stories like this wouldn't make headlines because it would be a normal part of life. Sadly, it isn't. Often people in restaurants, movies and other public places aren't tolerant of our children, especially when they make noise, flap their arms, fuss or have a sensory meltdown. People glare, mutter, make comments and ask management to move them away.

What if people didn't feel badly for kids with special needs? Because that's surely another reason for the popularity of the story, as is clear from comments. It's sooooo heartwarming when someone is nice to those poor children, goes the mindset. I mean, consider this: If Andrew, the Apple store guy, had done this for a child who didn't have special needs and his mom wrote about it, would that story have attracted much attention? Would people be trying to get Andrew on The Ellen Show? Would tears be coming to people's eyes? Would they be sending prayers the family's way? Exactly. I'll bet Andrew would have handled any child this way. I wish the masses would quit considering it an act of sainthood when people with disability are treated normally. This story is an example of excellent customer service, not above-and-beyond humanity.

What if it were no big deal for people to meet those with disability "where they are at," as LynnMarie put it. She meant it both literally and figuratively. Parents of kids with special needs often face resistance when it comes to accommodations in programs, activities and camps—even for birthday parties. It isn't that difficult to level the playing field so that our kids have the same opportunities as others do, but it definitely has to start with an open, willing mind.

None of this is meant to undermine what happened that day in the Apple store; Andrew did a wonderful thing for James.

But then: What if?
 

Max knows what he doesn't know, and that's good

 

Max and I are staring at his iPad. He's supposed to use this week's vocabulary word, "whimsical," in a sentence and I'm waiting for him to do it. Only he's not.

Max says something and at first, I don't understand him. Then he repeats himself and I realize he's saying, "I don't know."

It is the first time I have ever heard him say those words, and I'm thrilled; it's a cognitive and behavioral breakthrough.

For a long time, when Max didn't get something he'd either stare blankly or get frustrated and whine. In recent years I've seen him fake understanding. Like we'll read an article for current events together and I'll ask if he gets it and he says "Yeah!" and nods vigorously, only when it comes time to answer questions, it's clear he didn't fully comprehend it. Max doesn't get tests at school, so it's sometimes hard to gauge what he is and isn't absorbing. It never occurred to me to teach him to say, "I don't know."

Perhaps he doesn't disclose that he's not understanding because he aims to please. Maybe he's embarrassed. Or maybe he doesn't want to deal with additional explanations. The other evening, though, Max did acknowledge that he didn't know something. It takes a certain level of maturity and confidence to admit that (unlike a sister who shall remain nameless who makes like she knows everything). Ultimately, it will enrich his world, because if Dave, me and his teachers are aware that he isn't understanding we can keep at it until he does.

This is also a baby step toward self advocacy. Next up, I'd love for him to be able to say, "I need help with this" or "Can you explain that again?" We'll work on that.

We talked a little more about the word and came up with, "I am going to have whimsical balloons at my bar mitzvah." And he flashed me a smile because he nailed it, and he knew it.

Rattled

I'm holding a rattle over Ben's changing table, shaking it and carefully watching his reactions. He tracks it with his eyes as I move it from side to side. He swats at it. Good. But he's not yet able to grasp it.

I do my best not to pounce on the two occupational therapists who come to the house separately every week for Max.  I've done my part Googling what Ben should be doing at three months old, but I want to hear their opinion because they can gauge Ben with their own eyes. His next visit with the pediatrician isn't for another four weeks, which is way too long to wait.

I try to be as nonchalant as I can.

"At what age do babies grasp with intent?" I ask during each of their visits, because I know there's a fine-motor skill difference between babies purposefully grasping a toy and reflexively doing so because you've wedged the rattle into their little palm, as the therapist used to do with little Max.

Both tell me that at around four months, babies usually start grasping larger objects, like blocks.

I place a rattle in front of Ben and show how Ben swats at it.

"Looks good!" one says, smiles at Ben and then goes off to do Max's therapy session.

"When babies start bringing their hands mid-line, they're better able to grasp," another tells me on the afternoon she comes to see Max.

"OK! The ATNR should be disappearing soon," I say, adding ruefully, "I know too much."  

Really, what I want is for them to grab me by the shoulders and say, "THIS BABY IS FINE! HE'S DOING EVERYTHING HE'S SUPPOSED TO!" Because I need that assurance. Despite my best intentions, I am watching Ben like a hawk to make sure he's doing things on time, and worrying about him.

I did this with Sabrina, too, but don't remember feeling as anxious. I suspect that's because Max was two when she was born, and I was consumed with his development; I didn't have enough worry to go around. But now that Max is in such a better place, I can focus my concerns on the new little guy. They aren't ever-present, just little flare-ups here and there.

It bothers me that I worry.

I should know better.

Ben is not that baby. 

Obsessing about what Max was and wasn't doing drained a lot of joy out of the first years with him. He was a smiley, pudgealicious tot; I was a person who had loved babies since she was old enough to pick them up. But the ever-present anxiety meant I could not fully enjoy him. Instead of relishing the child in front of my eyes, I'd freak out about the child he could be. When would he hold a bottle? Grasp a toy? Sit up on his own? Crawl? Toddle? Walk? Talk?

The memories of Max's therapy sessions are with me. How the Early Intervention OT would stroke the tips of his fingers on his fisted hands to try to get them to open, then wedge in a little oblong block for him to hold. How she'd hold her hand over his, trying to get him to clutch a peg. Max had to be taught how to grasp objects. Some of the other fine-motor skills babies develop, such as transferring objects from hand to hand and using a pincer grasp for small items like Cheerios, happened when Max was around 9.

Dave has his own baggage from Max's babyhood; he gets overly concerned about Ben's well being. I joke about it but realize that when he says things like "Honey, I was putting him on my shoulder and bumped his nose, do you think he's OK?" he is scared he'll damage the baby. I don't share my rattle worries with him because I don't want to give him any more cause for concern. I don't even want to voice them, because then they'd be real.

And so I stand at Ben's changing table and shake the rattle at him, savoring his sweet smile, exquisite dimple and the cute sounds he makes, and wait and wait for him to grasp it.

Extra-thick hot chocolate kids can spoon up

This is Max's favorite hot chocolate. It's thickened, so it's good for kids with swallowing challenges or sensory issues. Oh, and it's yummy!

Ingredients

2 tbsp. sugar
2 tbsp. unsweetened cocoa
Dash salt
1 cup milk
1/4 tsp. vanilla extract
5 .16 oz packets of Hormel Thick & Easy Instant Food & Beverage Thickener (nectar consistency, taste-free), or about 4 & 1/2  teaspoons Thick-It Instant Food and Beverage Thickener Unflavored

How to

Mix sugar, cocoa, salt and thickener in a large mug. Nuke milk in microwave for about 1 & 1/2 minutes, until hot, or heat in saucepan. Slowly add milk to cocoa mixture, and stir a lot. Enjoy watching your child enjoy!

The Special Needs Blogger Weekend Link-up: Go!

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Happiness secret: aim low and kiss your baby boss

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Her brother's keeper, his brother's keeper

This weekend, Dave texted me a photo of Max and Sabrina in the pool at Animal Kingdom Lodge. It was similar to one that I loved from six years ago when we visited there, Sabrina clutching Max in her arms as they floated together. 

Lately, she's had to be there for him more than usual. At night, if I'm feeding Ben and Max wants to read a book, I ask her to do it with him. If I'm holding Ben and Max needs help opening something, Sabrina steps in. When we walk into the house and I've got Ben in the car seat and our shoes are wet, she'll remove Max's shoes in the foyer after she takes off her own.

I had no idea how the dynamics of having a baby in our house would work out; I figured Sabrina might help with Ben. She does, only as it turns out, she's also helping with Max. 

I try not to ask a lot; I'm very aware of not putting too much responsibility on her small shoulders. But Sabrina's not shy about speaking up when, say, she just doesn't feel like reading with him. I make it a point to have Max help her, too, like if she's reading in the living room and wants a cup of water, I'll ask him to walk it in.

Meanwhile, Max is doing his part with Ben. He is the self-appointed dirty diaper tosser, standing by as Dave or I change Ben. (And, yes, way to sneak in OT!) When Ben cries in the car, Max leans over and repeatedly says, "It's OK, it's OK, it's OK." 

Last night, as Ben lay on the changing table, I had to dash into our bedroom to grab a burp cloth. I asked Max to come over and place two hands on Ben. He's not rolling yet, but you never know.  

I came back a few seconds later to find Ben smiling and gurgling at his big brother.

Happiness secret: aim low and kiss your baby boss

After an impressive run of not napping for more than ten minutes at a time, Ben has gotten into the habit of crashing every night from about 9:30 to 11:30. Um, not the most ideal time—hello, sleeping through the night?—but for now, I'll take it. Because that's two hours when I can get stuff done. At least some stuff.

I have been struggling with this lack of ability to accomplish much of anything, other than taking care of an infant. Yes, yes, that's a Big Deal. But it's been hard to accept that Ben is my very demanding (although super-cute) boss and my time is not my own, especially since I typically try to pack a lot into one day. I've always been that way but I've learned to be hyper-efficient since having kids. Now, I am lucky if I am able to finish one email over the course of a few hours. I find myself grateful for bathroom breaks.

A part of me feels that slowing down the drive that's enabled me to juggle work and kids and their activities and Max's therapy and medical needs and chores and the house and other responsibilities galore means everything is going to fall apart. And that letting go means I'll never be able to grab hold again. These feelings are not at all logical, as feelings tend to be. I've been trying to find a way to contain them that doesn't involve consuming mass quantities of Double Stuffed Oreos.

In the last few days, one thing has brought me some peace of mind: aiming low. Real low. That means I decide that I will put away half a pile of the laundry at the foot of our bed. Not the whole pile, just half. Or I will write two thank you cards for gifts Ben got, that's it. Or I will scan one page of unopened email. Or I will make just one call for planning Max's bar mitzvah, no more. I pick a couple of bite-size tasks per day, and I pull them off. 

I haven't fully embraced my reality, and probably won't, but aiming low has helped me feel less stressed about all the stuff I can't get to. It's been rather astounding how accomplished I feel doing so little, like I am Warren Buffet and I have pulled off a billion dollar takeover when all I did was remember to bring up a few rolls of paper towels from the basement.

Of course, I am my own worst taskmaster so nobody gets on my case about the delays and didn't-dos. Never in this life will Dave say to me, "Honey, why haven't you gone through that towering pile of mail on the counter?" It's unlikely the kids will ever remark, "Mommy, I can't believe you haven't tidied up the area formerly known as the living room!"

Nobody cares, except me. And for now, I'm not caring that much.

Ability Hacks: Self-feeding tips for kids with disabilities

If you have a child who needs adaptive utensils, you're probably well aware of how expensive that stuff can be (see: You want me to pay $30 for a spoon?). So I'm happy to share some alternatives that encourage self feeding and don't cost a bundle. Note, the utensils will not work for children with severe bite reflexes and you should definitely check in with your speech therapist before trying any of these.

Find easy-to-grasp, inexpensive flatware at IKEA

The handles on the IKEA Kalas children's tableware have a nice, wide grip. They're sturdy, too, and great for trips; we keep a spare pack in the car. At $1.99 for a colorful 18-piece set with forks, knives and spoons, you really can't go too wrong. And you can order them online if there's no convenient IKEA near you.

Adapt utensils with foam tubing

Cut foam tubing ($15 for six tubes with three different opening sizes) to fit the handle of a maroon spoon (available with small and large bowls, check with your child's speech therapist) and voila—a spoon with a user-friendly grip. It's dishwasher safe. Works on pencils, too.

Try an ordinary sippy cup 

When your child is working on drinking by himself, the Playtex Training Time Soft Spout Cup is super-light and has handles on both sides for easy gripping. Cost: $5.80 for two.

Keep plates in place with Dycem

A square of this anti-slip material will keep plates from sliding away as your child scoops up food. You can buy a Dycem pad for $16 or a roll of the stuff for $20 (the least expensive is in green).

Got a feeding hack? Share it here!

He drank the whole pina colada. Squeee!

Dave and the kids regularly called and texted me from Disney World over the weekend, which was almost like being there. Almost. Most of their updates were of the "We are on the monorail/We got Mickey ears/Max pushed me/We saw Mickey Mouse/We had Mickey ice-cream pops/We went on the safari five times help me/I got all my friends gifts/Max isn't listening to Daddy/We saw Donald Duck/The kids are so happy" variety. Then this came in: 

"Mommy this is Fireman Max I drank a whole Pina colida."

I knew that pina coladas were on Max's list of Disney must-dos; he was going to have one poolside at the Animal Kingdom Lodge (sans alcohol, of course). Max downed several during our vacation in The Keys last year, and he associates the drink with Florida and good times; Sabrina is a Shirley Temple kind of girl. Max doesn't request them at home, nor has he demanded that we install a tiki hut on our deck.

Reading Max's message gave me a lift. It wasn't just a text, it was eleven words filled with accomplishments:

-- He's texting! He just started doing it in the last year. Sometimes, it's to remind me of important to-dos ("We are going to fire house today") and sometimes it's to say "You're the best Mommy ever." Swoon.

-- He wanted to share his experience. This hasn't always been the case; for a long time, getting Max to recount anything involved us asking a series of questions. These days, he's taking the initiative to share.

-- He is writing in sentences.

-- He correctly used the past tense. 

-- His spelling is really coming along; even if he doesn't get things right, he's often close.  

Also, Max has discovered what I've suspected all along: Pina coladas are the secret to life.

The Special Needs Blogger Weekend Link-up: Do your thing

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: The hardest question to answer

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Living in survival mode

This morning, I awoke to a pile of laundry at the foot of our bed. At least it was clean. It's been there for three days, because I haven't had a free moment to put it away.

This morning, I realized that I had never responded to the principal of Max's school when she emailed me to say she was available to talk with me about one of his therapists, per my request. She was available yesterday.

Today is our 15th wedding anniversary. I knew full well it was Thursday of this week, except this morning, I forgot it was Thursday. Luckily I had a card, but then I had to write it as I was nursing Ben and so it is not totally legible, but it is the thought that counts even if the thought got some spit-up on it.

Three months into having Ben, I remain in survival mode. I seem to have forgotten how consuming babies can be, and I keep right on forgetting because every day I continue to be surprised by how little I get done. My days are a continuous loop of feeding, burping, cleaning the spit up, changing diapers, changing Ben's outfit, repeat, repeat, repeat. He is still not into napping (see: Mr. Spit Up von Fussypants). Once Max and Sabrina get home from school, even bathroom breaks are a luxury. When Dave comes home from work, I shove Ben at him and raid the fridge. Aside from eating and showering, writing this blog is the only thing I basically do for me.

The other day, Sabrina got upset because when she walked in the door I didn't immediately say, "Hi, honey, how was your day?" since Ben was wailing. I understood, of course—she wants and needs attention, too—but still, her tirade was over the top. As she sputtered "Don't you CARE about me?" I said, "Sabrina, sweetie, you know how much I love you. Do you know what 'empathy' is?" And she calmed down and grudgingly said, "Yes! It means you feel badly for someone." And I said, "Well, not just that. It means that you get that another person is handling a lot and you are understanding and kind toward them. I am handling a lot right now, so I'd appreciate a little empathy, OK?" She considered that. Then she said, "Mommy, I love you and I have empathy for you."

And that was just what I needed to get me through the rest of the day.

Who's the boss? Max

"Sabrina, upstairs now!" Max commanded last night. He wanted her to pack for Disney World. Usually, Sabrina's the bossy one, especially when it comes to Ben ("Max! Don't breathe on him! You have germs! Daddy! Wash your hands before you pick him up!"). Now Max is discovering the joys of taking charge.

This has been making my life a little easier, as I don't have to be Ms. Naggypants if Max is urging everyone to do their thing. When getting out of the house takes forever, there's Max telling everyone "Let's go!" Not only is he on top of things, he's definitive. When we can't decide where to have Sunday dinner and it's getting late, Max will say "Sushi!" 

Max has always known what he wants, even if he didn't have the words to express it. When he was little, he was able to communicate his desires and needs by pointing at photos I assembled in a binder, organized by categories including food, drinks and toys. Then we graduated to illustrations. Then came the Dynavox, his first augmentative communication device that enabled him to press on images that would sound out words. Since 2010, he's been using the Proloquo2Go speech app. The creators filmed a video of him using it at school two years later, titling it "It really has become his voice."

These days, Max is increasingly articulating words in his new role of Commander in Chief. I especially love it when he comes to my defense. If Dave is looking through the mail after he gets home from work and I am sitting on the couch in a daze, fried from taking care of Ben (see: Profile of an Anti-Napping Baby), Max will tug at Dave's sleeve and say "Help Mommy!" Should Dave linger, Max will add, "NOW!"

I think I need to get him on the phone with the insurance company about those AWOL reimbursements. 

The hardest question to answer

"Did I have a playmat when I was a baby?" Max asked me yesterday afternoon, when he came home from school and I was playing with Ben. He's been asking these sorts of questions since his little brother was born. Typically, he points at the object, makes a motion of rocking a baby and points to himself.

Max has wondered whether he had a car seat when he was a baby, whether he cried a lot, whether he made big poops. His whole face lights up when he hears that, yes, he used to be just like Ben—or rather, Ben is just like he was. I'm not sure why he's asking. It might simply be Max putting together the pieces of who he is.

In the evening, I was holding Ben and he was making cute sounds. Max pointed to the baby then he pointed to his mouth. He was asking if he had made sounds like that when he was a baby.

I got choked up. Because, no, Max hadn't. There were no sweet coos when I held him, no gurgles from the back seat when I drove him around.

The silence was painful. I knew Max was at risk for not talking because the stroke he had at birth damaged the part of the brain that controls speech, and I was desperate to hear him babble, a precursor to speech. Once—once—when Max was Ben's age he made a sound while I was driving him to a therapy appointment, and I got so excited. I can't remember the sound which is weird because it was monumental at the time. I thought it was the start of something. But, no. He never goo-goo-gooed or ga-ga-gahed..

I didn't want to tell Max he hadn't made sounds like that as a baby; I didn't want him to think anything had been wrong with him. In retrospect, I wish I could have been straight up and made it part of our evolving conversation about cerebral palsy. At that minute, though, I was floundering in sadness that had unexpectedly surfaced and I didn't want Max to see me upset. So I swallowed hard and said, dodging the question, "Max, you smiled and laughed a lot when you were a baby!"

He grinned and seemed satisfied. For now. As Ben gets older, there will be more questions, I'm sure. Did he hold a bottle like Ben? Roll over like Ben? Crawl like Ben? Sit up like Ben? Play with toys like Ben? Talk like Ben? Walk like Ben? Jump like Ben?

I've thought about it. When the answer is "no"—Max never did hold a bottle, for one—I can explain why. Because the cerebral palsy made his muscles tight his hands were in fists most of the time, so Daddy, me or the babysitter held the bottle for him. But I'll also be able to say that as he got older, he learned to hold a cup, and he's gotten really good at that.

And when the answer is "yes," as a baby Max did do things Ben does, I can make it a point of pride that he did them his way. And maybe I'll get down on the floor and show him how he commando crawled, using his arms to propel his torso like an army solider in combat. 

I want Max to feel so good about his accomplishments. I want him to understand that even if he  didn't do the things Ben does or do stuff exactly the way Ben does, he's always been an incredible boy, then and now. 

Recycling night doesn't get any more exciting than this

Recycling night in our neighborhood never used to be a highlight of my week. But then, a couple of months ago, Max decided that he wanted to help Dave put out boxes and plastic bottles.

We suspected it was part bedtime delay tactic but still, it seemed like A Good Thing. Max isn't prone to spontaneously offering to lend a hand with stuff around the house because it's easier to have one of us help him with menial tasks. He's gotten chores in recent years, including loading and unloading the laundry machine, picking up around his room and setting the table. He's pretty meh about them. "I love doing my chores!" said no child ever.

Then Max volunteered to help with the recycling, and he actually does get psyched for it every Sunday night. So do I, in part because Max has been sparing me that clichéd "Take out the trash" nagging. It's he who doesn't let Dave forget.

Never, in the history of recycling, have Pampers boxes been so enthusiastically taken to the curb.

Last night, I stood at the back door holding Ben and watching Max in action. "Two hands!" I mouthed through the glass but, as usual, he was determined to use only his left hand.

I stared down at Ben and thought about how when Max was a baby I could have never imagined the day would come when I would see him walking down our driveway taking out trash. I mean, what parent dreams of that?! But there he was, hauling boxes. Such an ordinary thing that seemed anything but, to me.

The Special Needs Blogger Weekend Link-up: Get your post on

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Hey, babysitter, don't charge me more for my child with special needs

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

He's making a list, checking it eleventy billion times

 

Max is fond of making lists. One of his first, years ago, was a list of what we all liked to drink (Mommy: Iced coffee. Daddy: Hot coffee. Sabrina: Orange juice.). That was followed by what everyone likes to eat. He used to have Dave, me or our sitter write them out for him.

Things have changed. Max is still creating lists, only now he's typing them out himself on his iPad. Last year, when he and Dave went on a joy trip to Chicago, he made a list of what they'd do there. He's also made a long list of his favorite things (color: red; movie: Planes Fire and Rescue; sport: bowling). Before his bowling alley birthday party this year, he made a list of all its components, down to the red punch that would be served.

I'm psyched about his list-making because it shows real progress with spelling and creating sentences, plus it's an entertaining activity that does not involve TV or YouTube videos of fire trucks. Max enjoys lists, I think, because it makes him happy to lay out the good stuff in his life. That way, he can refer back to a list and keep relishing things again and again (and again). Blessedly, he's usually content to sit at our kitchen table and read to himself or make additions and changes, so I am not forced to endlessly hear "I love fire truck number 31."

I could definitely take a lesson from Max. My lists typically contain highly non-entertaining notes such as "Tell electrician outside light by garage isn't angled right and not turning on when we go to garbage shed." (Actual note in my iPhone!) (If I shared more excerpts, you'd promptly fall into a deep sleep.) (Hmm, maybe I should start reading my to-do lists to Ben.)

Inspired by Max, as Mr. Spit Up von Fussypants took a nap (for a whole 15 minutes) yesterday, I made a list of awesome things about Ben. I mean, obviously I know them but seeing them laid out gave me a lift. OK, so I listed almost every single body part. (Those lips! Those chubby-and-getting-chubbier hands! That baby pot belly!) But also, the special coos Ben has for me, the way he breathes heavily when he's excited and how he holds one fist in the air but doesn't know what to do with it.

Most recently, Max made a list about his trip to Disney World next Thursday. It's a surprise birthday present from me and Dave, taking place a month later because you can get pretty good deals in January if you are willing to pull your kids out of school for two days. Dave, Max and Sabrina are going and me (aka Cinderellen) and Ben will be left at home to fend for ourselves. It'll surely give me time to make a list for Ben about the many benefits of napping.

Max is, most of all, eager to recreate the magical experience we had the last time we were at Disney. Which is, we saw a lion take a dump during a tram tour in Animal Kingdom. "See lion make big doodie" made it onto the top of his list, along with staying at the Animal Kingdom Lodge and eating stuffed shells (his current food obsession).

Max's music therapist accidentally erased his list during their recent session, and together they started a new one. When I saw it, I was awed to see that he'd added yet another activity: drinking pina coladas.

OK, then. Now I'm really bummed I'm not going.

Hey, babysitter, don't charge me more for my child with special needs

"I've babysat kids like him before," the woman said. She was seated on a couch in our living room as Dave and I spoke with her and the kids played games on their iPads and occasionally chimed in. I know she didn't mean anything negative, but it wasn't a good sign. Especially since she said it as if Max wasn't right there and capable of understanding her.

We're lucky enough to have had the same sitter since Max was a baby, but now that Ben's here, Dave and I decided it would be good to have someone in the wings for weekends or days when our sitter was off. This woman knew Sabrina and Max; she had babysat kids in our neighborhood. She asked Sabrina a bunch of questions (what grade was she in, was she enjoying her new baby brother); she asked Max only for a high five.

The woman knew Max had a cheerful disposition and that he's pretty easygoing. I spelled out what specific help he'd require: He needs food prepared for him, and he can't eat anything chunky or crunchy. He requires help showering and dressing. At night he needs his medication, a powder that comes in packets, sprinkled into a yogurt, pudding or applesauce. If he's doing a craft, he might need help setting it up or cutting stuff. She nodded agreeably as I spoke.

"Ire-ahn Ax!" added Max, reminding her that he needed to be addressed as Fireman Max.

Dave saw her out the door; they stood in our hallway and spoke for a bit.

"How much did she want per hour?" I asked after she'd gone.

"She said that when she'd babysat kids like Max [THAT phrase again] she got forty dollars an hour," Dave told me.

What?! 

While the help and attention Max needs aren't typical for someone his age (nor does the average 13-year-old still have a babysitter), the tasks themselves aren't out of the ordinary for sitters. And sure, you have to really focus to understand what Max is saying or wait for him to type out words on his speech app. But isn't this what sitters do—look after kids in their charge and engage them? Max does not require a caregiver with special or medical training, the kind who typically command a higher rate of pay.

Dave said we couldn't do forty bucks an hour, and told her the rate we're accustomed to paying. She said she'd accept that. But we have yet to book a follow-up interview. It wasn't that I felt she was testing us to see how much money she could get, it was her mentality. I realize that when she said "I've babysat kids like him before" she was trying to make it clear she had relevant experience. But in my experience, her words belied a mindset that defines people like Max by their special needs instead of viewing them as people first.

I expect sitters to give Max the help he needs but not otherwise consider him so very different from other people. I expect sitters not to charge us double the usual rate of pay.

What has your experience been: Have you had sitters upcharge you for babysitting your child with special needs?

Image: Wikicommons

Mr Spit Up von Fussypants

Sabrina calls Ben "Mooshie." Max calls him "En." Dave calls him "Benjamin" and sings nonsensical songs to him like "Benjamin, Benjamin, you're so cute, you should eat lots of fruit." I call Ben "Pookie" and "Yummy boy" and, when I'm at wit's end, "Mr. Spit Up von Fussypants."

I've been trying to be valiant about Ben's spit-up issues and fussiness. He's a healthy baby and I've felt that I have no right to gripe. I went through hell that first year of Max's life; this is just stomach upset, I've been telling myself. 

When I brought Ben to the pediatrician's a month and a half ago because I was concerned about weight gain, it became clear that packing on pounds wasn't a problem (he takes after me in that department). The doctor put him on Pepcid to help relieve distress. It's helped some, but he still gets fussy and spits up frequently and voluminously, even hours after he's been fed. Ben can drench  several burp cloths in one feeding. One weekend I was so desperate for extra burp cloths that when a mom offered me some really nice, plush ones that had the name "Miles" embroidered on them, I gladly took them, so some days he's Miles Spit Up von Fussypants.

People and some doctors like to say that spit up is a laundry problem, not a medical condition. But it's mentally draining, especially when you have a baby who's not into napping. My day is a blur of feeding, burping, changing diapers and wet outfits, cleaning spit up off the floor/sofa/chair, walking Ben around to console him and putting him down to nap only after ten minutes, he's up.

I'm fueled by the fact that Ben's getting bigger (even if it feels like I'm accomplishing nothing during the day) and his smiles and coos (favorite phrase: "A-goo!").

But then: There are times when I want to just curl up in a ball and hide under our bed comforter, because I am strung out and wish I could transform Ben into a baby who eats and burps and then he's done.

I'm doing the right things: I put him in an upright position when I nurse him, burp him often during feedings, keep him upright for 20 minutes afterward, let him nap in our Fisher Price Rock 'n Play Sleeper (which has an incline) and do shorter feedings so he's not overfed. I've also cut back on dairy and caffeine in my diet. Nothing's helped.

I posted about this on a local Facebook group and got a whole lot of advice, including burping before feeding and giving him BioGaia ProTectis probiotic drops (ordered them). A friend who's a lactation consultant stopped by, checked his mouth and said he has both tongue and lip tie. When I spoke with the pediatrician, though, he says he only refers babies for a tongue tie procedure if they're having issues nursing and aren't gaining weight.

"Babies usually grow out of reflux between six and twelve months," the doctor told me, and he meant to be reassuring but that sure seems like a looooong time to deal with this.

Sometimes, as the baby spits up for a third or fourth time when I'm feeding him (and by "spit up" I mean the stuff pours out his mouth, down his outfit and off the sides of his neck) and I'm upset because Ben seems uncomfortable and because all that milk is going to waste, I think back to the early days with Max. I was constantly shuttling him to therapists and specialists, massaging his limbs, doing exercises the therapists recommended and crying a lot in the shower. Max wasn't a good nurser because he had oral motor issues, and a feeding session could take a good hour.

When I consider all that, I think of how lucky I am that Ben's basically OK. He has stomach issues; Max had a stroke. This is why I haven't really discussed the spit-up saga with friends or family (see: "no right to gripe"). But this weekend, my sister was visiting and saw what was going on.

"He's not an easy baby," she noted.

"No, he's not," I said, and relief flooded through me because it felt good to acknowledge.

A little later, as I changed Mr. Spit Up von Fussypants' spit-up drenched outfit, he beamed at me—one of those big smiles where I could see the dimple in his right cheek. I smiled back, and grabbed a burp cloth to catch the spit up.

That time I tried to teach Max to say "DUH!"

"Duh! Of course I'll be careful!" Sabrina says to me. I'm in bed and she's about to go make egg-in-a-hole for breakfast, with Dave's supervision.

I don't love it when she says "Duh!" to me but she's generally a great, respectful kid, so I never call her on it.

It occurs to me that Max doesn't know to say "Duh!" And while I don't want two kids in the house duh-ing me, it seems like a phrase most tweens and teens have in their repertoire and why shouldn't he? It could come in handy around peers. Last year his teacher taught him to say "OMG!" and it's been awesome to hear him use it appropriately.

Also: The letter "D" is a hard one for Max to articulate, and trying to say "Duh!" would be good practice.

"Max, can you say 'Duh?'" I ask, using the proper obnoxious inflection.

"Uh!" he says, happily.

"No, you have to say it like you know something is true but the other person doesn't—DUH!" I say. "Duuuuuh!"

"Uh, uh, uh!" he says, smiling. Nope. 

"OK, Max, this is how it works," I explain, using the best example I can think of for him. "If someone says 'Max, do you like firefighters?' when you are wearing your Fireman Max shirt and firefighter hat, you could say, 'Duh!' It's kind of like saying 'Yes' but it's funnier. Only you shouldn't use it with a teacher or therapists, it's just for being silly."

"Uh!" Max says, happily. Nope. 

After we eat breakfast, we make smoothies. Max points to the blender as Sabrina is whipping one up for him.

"Uts?" he asks (one of my favorite words ever). He's asking if there are nuts in there, because he's allergic.

"Duh, Max! There are no nuts! I know you're allergic," she says.

"UH!" Max says, happily. Nope.

And now, I am on a mission.

"No, it's 'duh!'" I say and Sabrina shoots me a seriously weird look.

That afternoon, when my brother-in-law is visiting, he remarks, "It's getting cold outside!"

I whisper to Max, "Say, 'Duh! It's winter!'"

Max just says "UH!" and he hasn't said it with attitude but my brother-in-law gets it and smirks at him. I crack up.

I know: I'm teaching Max a word most parents wish their kids would un-learn. But then, I want to enable Max in any way I can, whether it's helping his body move better, helping him learn better, helping him speak better or helping him develop some age-appropriate attitude.

You can bet, however, I will not be showing him how to do the eye roll.