Friday, April 20, 2018

The Disability Blogger Weekend Link-up: Click and tell


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: I am his trusty translator, but I will be glad not to be

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.

Thursday, April 19, 2018

On being a parent who depends on the kindness of others


Years ago, as we were headed home from Disney World, Dave and I stood by the security line at the airport with Max and Sabrina, unsure of what to do. The line was extensively long, the kind to trigger a Max meltdown—he couldn't handle crowds or long waits back then. I decided to see if I could find someone to help, and I approached a TSA officer and explained our situation. "My nephew has autism," she said. "I totally get it." And then, she escorted us through the line.

I shared this story in the wonderful new book When Action Follows Heart: 365 Ways to Share Kindness. It's by my friend Susan Spencer, the Editor-in-Chief of Woman's Day who also happens to be one of the nicest people I know. The book is full of simple yet meaingful ideas: print out a quotation or song lyric a friend likes and frame it for her as a surprise; visit a local animal shelter with your kids to play with the animals; take five minutes to write a current or past coworker a reco on Linkedin; designate a Crazy Food Day in which your family gets to have pizza for breakfast, pancakes for dinner and ice-cream anytime. (At last: validation! I do this because it's laziness, but evidently, it's a good deed.)


Blanche Dubois once famously said, in A Streetcar Named Desire, "I have always depended on the kindness of strangers." Until I had Max, I was the opposite: a fiercely independent person who only wanted to accomplish things on her own. And then, suddenly, I was that person dependent on the kindness of strangers—at restaurants, at events, at nearly any public place where Max needed a helping hand or an extra helping of empathy.

I took the assistance, of course. It leveled the playing field for Max so he could participate in an activity the same as others kids were, or if it could offset his sensory issues. Still, there have been times when the kindness seemed to emanate from a place of pity, and that I've never made peace with. It made me uncomfortable when a woman who worked at Dunkin' Donuts commented to Dave about Max not being able to talk and then gave him free donuts. Some people thought I was being overly tough, and I don't ordinarily look a gift jelly donut in the mouth, but it's upsetting when people think that Max's condition is sad enough to merit freebies. This is not a sentiment I want to encourage.

In general, though, I have learned to become a more gracious receiver of kindness, thanks to Max. As the mom of a child with disabilities, you figure out pretty fast that it takes a village to raise your kid. For sure, I could stand to dole out more kind deeds—and I've got 365 of them sitting on my nightstand. What's something kind that someone has done for you lately? 

Wednesday, April 18, 2018

The Very Hungry Toddler


One Sunday morning, the warm sun came up and there, in his crib, was a very hungry toddler.


He ate some cookies and one half of a chicken nugget with the coating rubbed off and half a bottle of ketchup. But he was still hungry.


On Monday, he ate two bananas, one tablespoon of almond butter with most smeared on the table and in his hair and a Family Size box of Cheerios, but he was still hungry.


On Tuesday, he ate 30,000 goldfish, but he was still hungry.


On Wednesday, he ate a couple of crunchy rice thingies that seemed vaguely healthy, and gleefully ground one into the couch and all of its crevices. Then he gnashed his terrible teeth and roared his terrible roar and.... Oh, wait, wrong story. Anyhoo, he was still hungry.


On Thursday, he downed a couple hundred applesauce pouches, but he was still hungry.

On Friday he ate through a half slice of all-natural-antibiotic-free turkey, one pea, one strand of spaghetti, one yogurt that he insisted on eating with a fork, one-eighth of a chicken sausage also without preservatives or anything bad of course, one cupcake, and one-sixteenth piece of organic cheese, but then he spit it out onto the floor.

That night his belly hurt, and he used it as an excuse for postponing bedtime.

The next day was Saturday. The toddler gnawed on some construction paper and after that he felt much better.

Now he wasn't hungry anymore—and he wasn't a little toddler any more. He was a big old hangry toddler who was never satisfied with his meals.

He built a small fort out of blankets. He stayed inside for all of three minutes, then he pushed his way out. Where was his applesauce pouch? AND HIS GOLDFISH?!!!!

The end.

Tuesday, April 17, 2018

I am his trusty translator, but I will be glad not to be


"I hope she feels better!" Max is saying into the phone. He's talking to a relative who has an ailing mom. I can hear the man saying, "What, Max? What?"

And so I lean over and say into the speaker, "He said he hopes she feels better."

Max does not much like to use his iPad speech app, TouchChat with WordPower, at home. He feels that people in his family ought to understand him, although he knows that we don't always, and that his app makes it easier for others to know what he is saying. (He does have an incredibly clear way of saying "I hate you!" to me. Of course.)

Over the years, we've been known to tease Max about the way he repeats himself, in the hopes that we'll finally get what he is saying. (See: Want to buy a monkey?) As he gets older, though, it's getting more important for him to understand—or, more importantly, accept—that his words are not always understood, and he needs augmentative assistance.

Max is getting a little better about this. He goes to a teen night program at his high school where students from another school visit, and Max has been asking to take his iPad along. One night, he also brought copies of cards from the conversation game TopicTalk. But at home, he wants us to understand him, and that is not always possible. In fact, Max used to think that it was our problem, not his, that we didn't get what we were saying. He used to lean in closer and shout stuff into my ear.  He doesn't do that as often anymore.

When we're out and he doesn't have his iPad on him, I translate for others: 

"He'd like avocado on his hamburger, please!"
"He's asking where you go to school."
"He wants to know if those sneakers come in red."
"He wants to know why you have no hair."

OK, I didn't say the latter, which Max said to someone in our neighborhood who's bald. Thankfully, the guy didn't understand him, and I later had a discussion with Max about Thoughts You Keep On The Inside.

I am always there for Max. But we are getting to the point where I'd prefer to not to serve as his faithful translator so he'll use his speech app, and be more independent about communicating. I do realize that it is not the most fluid form of conversation to have to type out words. I have high hopes for voice-recognition software like Talkitt, which has been in development for a while. I'm realistic about Max's speech potential: While he continues to make some progress, his articulation will forever be challenging for others to understand. The stroke he had at birth caused this, as it can in adults who've had strokes. But for sure, I am grateful for the speech he does have, and the various ways he expresses himself—with typing, gestures, nodding his head, shooting me dirty looks.

I can't always be there to be his translator, especially because this job just doesn't pay very well. No, really, I have a feeling that as Max matures, he'll increasingly want communication independence. And that's the way it goes: I can't force anything—Max has to want it himself in order for it to happen.

Word.

Monday, April 16, 2018

The people who knew you back when


I visited an old friend in Chicago this weekend with Sabrina, and saw a couple of people I hadn't seen since my twenties, before I had kids. This sort of thing is both fun and freaky, because part of me still feels twentysomething (it is not my abs), and it's hard to believe so much time has passed. 

I know how these conversations usually go: We talk about where we live, number of kids, ages, who we married, what we do for a living. We reminisce about activities/parties/good times. Sometimes, we get into discussions about where our children go to school, and I note that Max has disabilities and attends a private school in another town. Sometimes, people ask what he has and when I say cerebral palsy they look troubled and I say, "He's doing great!"

I wish I could tell them just how far Max has come and how much I've learned from him about people with disabilities, but there's only so much you can get into when you're standing at a party and catching up . So I show them photos, I look at photos of their kids and we move on. And I end up feeling a little sentimental about how relatively carefree life used to be pre-parenthood, even though it didn't feel like it back then because work drama and boyfriend drama and family drama is still drama. And I'll think about how I never could have imagined I'd have a child with disabilities—and how I couldn't have imagined I'd be lucky to have Max.

A couple of those discussions happened. And then, a woman said something I wasn't expecting.

"I remember how you were always laughing at something," she said. 

I thought back to that neonatologist in the NICU who I'd wailed to on more than one occasion, and who somberly told me that having Max would change my personality, and she meant not in a good way. 

I was definitely a ball of sadness, stress and anxiety early in Max's life. But then, I returned to me. Not completely the old me, because parenthood can mean being more cautious and less spontaneous than you used to be, in part because of the logistics of bringing our brood along and in part because even if we were by ourselves we wouldn't want to do anything risky.  Dave and I were ice-hiking on a glacier in Alaska in the photo above. These days we're more like to be hitting Adventureland at Disney.

"You loved to laugh," that woman added.

"I still do," I said.

Friday, April 13, 2018

The Disability Blogger Weekend Link-up: Show us what you've got


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: Thank you, God, for giving me an obnoxious teenage boy

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.

Thursday, April 12, 2018

My mom hoarded cookies in her closet, and I turned out OK


I saw my friend Stephanie in our office building recently, and as we compared notes about raising teens I griped about Sabrina stealing my beauty products. I don't wear much makeup but I have a thing for skin products, including luxe shower scrubs and this overpriced little pot of glow cream that makes me look like I'm 23 again, or something like that. Sabrina regularly digs into both of them. I finally hid the glow cream from her and stored the scrub out of sight, then felt a little guilty about that.

"Don't!" said Stephanie. "She has more collagen than you!" 

Wise words. 

As moms, there's this expectation that we will gladly give all of ourselves and our earthly possessions over to our children. That included the small piece of salmon I was about to dig into last night for a really late dinner. "Can I have it? I'm hungry!" Sabrina begged. I gave her most of it. Can she have the necklace/makeup bag/scented candle/skin cleansing brush/clutch/Montblanc pen I got as a gift, she wants to know. Happily, she could care less about most of my clothes or shoes. (Actually, maybe that's a bad sign, but I'll take it.)

I inherited the tendency to stash stuff away from my mom. She used to hide packages of cookies and bags of mini chocolate bars in the closet in her bedroom, where my sister and I regularly raided them. (I  haven't yet resorted to socking away Oreos in my room, but I'm not beyond it.) Otherwise, my mom was a completely selfless person, ready to give Judy and me basically anything she owned, along with all of her time.

Like many parents, I am pretty selfless by necessity—I don't have much time to hang with friends, go to shows, bike or do other activities I love because I'm busy driving my children places, feeding them, bathing them, shopping for them, helping them with homework, or doing any of the kajillion things that go into raising kids and managing a household. Yada yada you know.

As parents of children with disabilities, there are times when we need to be extra selfless. And so you sit with a child having a sensory meltdown in the lobby of the restaurant, as your extended family relaxes inside and eats. Or you give up Saturday morning workouts so you can drive your child to speech therapy. The sacrifices—financial, physical, mental—are many. Yada yada, you know.

I'm not doing my children any favors by regularly putting their needs ahead of mine. Kids and teens should see parents taking time for themselves, and having their own nice things. It teaches our children that the world does not actually revolve around them, and that it's important to have a sense of self.

Me, I like my creature comforts. So when Sabrina asks if she can have some object of mine, I'll respond, "No, but you can borrow it." (That or I'll find a good hiding spot.) And while I suck at daily me time, I've got bigger plans. Last summer, I went away for a long weekend with my two best friends to celebrate our birthdays. Nowhere fancy, just fun. Last week, we decided to go on another nonfancy-but-fun getaway. You can bet I'll be bringing my little pot of glow cream along...and hiding it when I get home.

Image: Flickr/Mike Mozart 

Wednesday, April 11, 2018

Lesson from Max: perfection is in the eye of the beholder


Max has a perfectionist streak. He notices when stuff is out of place in the house or there are crumbs on the dining room floor. This also applies when he does his homework on the SnapType app, which enables you to upload a photo of a worksheet and then type in answers or draw circles around text.

He likes his homework done just so. If the text he's typed isn't totally lining up with the ruled line on the worksheet page, he'll move the text box so it is. The other day, he had to choose which of two words should come first alphabetically. He'd draw a circle around the word, then he wouldn't be satisfied with the shape so he'd erase it and do it again. Once, he even did it a third time.


I sat on the couch, watching Max carefully make circles. It takes a lot of focus and effort for him to isolate one finger and manipulate it on the screen. When he was done, there was a page full of squiggly circles. 

I pondered it. To me, they were squiggly. To Max, they were great. He didn't care that they weren't your usual perfect circle—they were the best he could do. And to him, that was perfect enough.

There it was, another life lesson from my children. I mean, how much more chill and enjoyable would life be if we took satisfaction in our personal best‚ and didn't regularly aspire to standards of perfection?

True, this doesn't apply to your job because whatever you hand in or present had better be your boss's idea of perfect, not just yours. But it has resonance for parenting and other parts of life where we put pressure on ourselves to live up to societal expectations—our appearance, our home's appearance, our career goals.

Thanks for the perspective, Max. Keep up the excellent squiggly work.

Tuesday, April 10, 2018

Thank you, God, for giving me an obnoxious teenage boy


Dear God,

Max got off the school bus yesterday and when I said "Hi, Max!" from the porch he sneered at me. Then he stomped down the walkway and when I gave him a hand to help him up the stairs he pushed it away so he could do it himself, but not before basically hurling his book bag at me.

I had a feeling, God, that you were showing me just how LUCKY I am to have this boy. I mean, would I have believed when he was a tot and first diagnosed with cerebral palsy that he would someday clomp down that path with such 'tude? No, I likely wouldn't have believed it. If someone had told me back then that he would step off the school bus by himself and huffily walk up the porch stairs on his own, I would have been gleeful. If I'd known that one day he would hurl his book bag at me—hurl! With his own two hands!—my mind would have been blown. What feats of gross-motor and fine-motor skills!

Oh, but God, you wanted to make it extra clear just how fortunate I am. Because when I asked Max to sit down so I could take off his sneakers and foot braces, he said, "I hate you!" And I reminded him, as I regularly do, that it's not nice to say such things to your mom. And he said, "I hate YOU!" with extra emphasis on the "you" and I gave him a look and said "I love you." Listen, I tried to have faith when he was little that someday he would be able to talk, but at times I wavered. And now, here was this boy proclaiming "I hate YOU!" Using his words, and enunciating them so clearly! Amazing, right?

Oh, but wait for it (well, you know what happened, of course). When we did his homework together, Max absolutely, positively insisted that the word "sneeze" should alphabetically come before "scam" and when I said "Sorry, that's not correct" he said "You're wrong!" and a few seconds later when he realized I was right he went to change the answer when I wasn't looking but I saw and jokingly said "Aha!" And he responded "I hate you!" And I was soooooooooo sure, God, that you wanted to raise my awareness of just how awesome it is to have a boy who can read and type and take a stand and who possesses that cocky teen arrogance that he is right at all times! While I might have been  anxious about his cognitive impairment years ago, you have made it clear that a person can have intellectual disability and be plenty bright and obnoxious!

And you weren't done yet, God. Because after dinner, when I informed Max that I needed to dash out with his sister for a quick doctor visit to get some testing, he insisted that HE needed to go to the doctor because HE had the sniffles. And then he snorted and pretended to cough for emphasis. And when I said that he didn't need to go to the doctor he glared at me and announced "I'M SICK!" Him giving me a guilt trip: Just, wow. Unbelievable.

Before I left, I pointed out that since he wasn't feeling well, he should go to sleep early. And naturally, God, you had him give the answer that would have me reeling from the wonder of him: "NO!" Actually, it was more like "NOOOOOOOOOO!" so I could get the full impact.

So, in sum, thank you, God. When Max was a baby, and we had no idea what the future held for him, we could have never imagined that what we would get is one obnoxious, cocky, righteous, defiant, guilt-trip-giving, hate-you-mom-spouting teenage boy.

I am a lucky, lucky mom! And I just need to keep telling myself that!

Monday, April 9, 2018

When you're grateful for the person with disabilities working at the store


I'm not usually overcome with emotion when I go to Home Depot, but that's what happened this weekend. Sabrina and I were down at the Jersey Shore on a girls' trip, and as she was taking a nap I ran out to get a few things and made a pit stop to pick up some paint.

When I walked in, there was an elderly woman in a motorized wheelchair greeting customers.

"Hi, can I help you find something?" she asked.

Her voice and speech pattern sounded like Max's, except hers was slightly clearer.

"I'm good—I know my way around, thanks!" I said.

As I walked off, a rush of emotion hit.

— I was deeply grateful that this Home Depot employed someone with disabilities. It's sadly not that common to see people with disabilities working in stores.

— I was grateful that this woman had such a visible presence. The more people see those with disabilities employed and interact with them, the better for people to understand their competence and worth. Yes, worth. Because most of us who have family members with disabilities have seen that some people out there just don't get it. What our loved ones often do get are pity stares, the kind that have made it clear to me that people don't understand Max's merits and can only see what they consider unfortunate deficits.

— I felt pangs of concern about Max's work future. Could he do a job like that? Would he want to? Would people have the patience for him to type out words on his speech app? Probably not, although maybe by then there will be faster technology. That or we'll have electronic chips implanted in our heads that will tell us everything we need to know.

I stood in an aisle, processing all this. I found the can of spray paint I needed and went to check out.

"I have something to ask you," I said to the staffer at the register. "I have a son with disabilities, and I was happy to see that woman in the front greeting people. How long has she been working here?"

"Oh, Dee's been around for ten years, maybe twelve," she said. "She's great! The store employs some other people with disabilities, too."

"That is really good to hear," I said.

I walked outside. I took a deep breath, then another. I got in the car and drove off, and as I did I thought how awesome it would have been if Max was there to see Dee, too.

Photo: Flickr/spycomps

Friday, April 6, 2018

The Disability Blogger Weekend Link-up: post one, read some


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: He does not want what he hasn't got: youth with disabilities and friendship

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.

Thursday, April 5, 2018

Introducing Fireman Ben


During my pregnancy with Ben, I wondered about several things: How would Dave and I deal with sleep deprivation as not-so-new parents? How would we manage three children? What would happen when Ben got to the inevitable stage of liking fire trucks?

I wondered about the latter only because Max was adamant that he alone could be the only firefighter in the house. "Ben will be a policeman!" he declared on more than one occasion. I understood this, on some level. Max was fiercely proud of his identity as Fireman Max; attached to his impressive collection of fire trucks and firefighter paraphernalia; and possessive about his relationship with our local firefighters.

Well, here's how things turned out: I don't remember much of anything from Ben's first few months, but evidently we all survived; Dave and I are juggling just fine most days or at least parts of most days; and the fire truck thing has, amazingly, worked itself out.

Ben is now into trucks of all kinds. He has assembled his own collection, but of course, likes to play with Max's fire trucks. Max used to say "no" but recently, he's cool with it. At bedtime (Max goes to sleep before Ben does), Ben has been trying on Max's various firefighter hats. Max has also been OK with this.

And then, the other night, Max said, "Ben can be a firefighter too!"

Or at least that's what I thought he said, because I couldn't believe it.

"Did you just say Ben could be a firefighter?" I asked.

"Yes!" said Max, grinning. "Fireman Ben!"

Whoa. Maturity, in action.

He proceeded to note that Ben could work at a different fire station. I said that we'd see how things turned out, because Ben was just a little guy trying out stuff and maybe he would want a different job when he got older.

I watched Ben sorting through Max's pile o' hats. They sit on a bookshelf, right next to an oversized poster of Max featured at a school event when he was around 8.

That Max: He's getting so big.


Wednesday, April 4, 2018

He does not want what he hasn't got


Yesterday I signed Max up  for an upcoming Sunday event for youth with disabilities, run by university students. It's a carnival, with arts and crafts, games, movies and performances. As usual, I felt a rush of gratitude that such events exist.

If it were up to Max, he'd spend his hours roaming Home Depot to shop for furniture for his future home in Florida, where he'd like to move, and watching YouTube videos of fire trucks around the country. He also enjoys taking walks around our neighborhood, going to malls and eating out. Shows, too, and maybe the occasional museum visit. I am grateful for all of this, because when he was little his sensory issues made going anywhere hard for him (and us).

Dave is Max's best friend. The two of them eat bad food together, go on drives and generally roam around, often with Ben in two. But while I am incredibly grateful for their bond, and for the social opps that exist, I am also heartbroken about the lack of friendships in Max's life.

The students in his classes, both at his former school and his current one, don't live close by. On occasion, I arrange hangouts, and Max goes to parties with classmates. His school hosts social events where students from other high schools spend an evening with students at his school. Max loves these evenings—he is a really friendly, social person. Which just makes it that much harder for me to deal with the lack of friends in his life.

For a while, a really cool teen boy was visiting Max through a program. A few months ago, the visits stopped. This boy no longer had the time or dedication for Max. Max cried when he forgot to show up one day. I understood, on a certain level; teens get busy. But then, I felt awful for Max. A new person, a girl, has taken his place; Max really enjoys her company, yet he still asks about that boy.

Although I have forged many paths for Max and opened many doors, I can't make friendships happen.

Max doesn't talk about this. He is content. Only I know what he is missing—best friends who bring fun and adventure and comfort and support and perspective and reality checks and shoulders to cry on and all sorts of consolation, serenity and happiness. And while I try not to project my own experiences and feelings onto Max, the thought of him not having this makes me sad.

And so, I'm glad for the social events that crop up. Unlike friendships, their satisfaction is short-lived, but what does that matter? Max has a great time.

As sometimes happens, I have to push my feelings aside and remember that he is not me. Max is his own person, he has a good life and he is happy.

Tuesday, April 3, 2018

Because I am in a carb coma...


I have basically eaten my lifetime supply of carbs these past few days since Passover began (which is basically how I feel every year), the reason for my carb coma. So today I am just going to share a couple of outstanding carb-y recipes.

Sabrina made this flourless cake by Martha Stewart for the holiday. It was all sorts of amazing. We didn't have espresso powder but decaf coffee worked just fine.

There is a very good reason this stuff is called Chocolate Toffee Matzo Crack.

Ever tried matzo brei? It is basically eggy fried matzo, and Ruth Reichl's version (actually, her mom's) is THE BEST. She's called it her "ultimate comfort food." Try it and you'll know why. Apologies in advance to your arteries.

Image: Flickr/Nancy Heller

Monday, April 2, 2018

The five types of children


Every Passover, when we have our first seder (the traditional meal), read the haggadah (the telling of the story of the exodus from Egypt) and get to the part about the four types of children, I think about Max.

As the telling goes, there are four types of children, each of whom views the seder in different ways: the wise child, the simple child (who is curious, wide-eyed-and wondering), the defiant child and the child who does not know how to ask. For years, Max was the last child. Then he became the fifth child: the sensory meltdown child.

A few years ago, he began sitting at the seder table. Last year, he sat through part of the first one before asking to be excused, then stayed for the second. And this year? Well, Max was the defiant teen. He started roaring right at the start—yes, roaring—as our extended family tried to make it through the haggadah.

"I hate holidays!" he declared.

We tried to ignore him. We asked if he wanted to just sit in another room by himself. Nope. He wanted to roar.

Oh, he knew what he was doing. "It's his way of being a teen," Dave said. I wasn't accepting that. I told Max he had to go outside if he wanted to roar, because he was scaring Ben and the other kids. Then I made him go out on the porch, except he roared and banged on the door. Nothing was helping; he just stood around roaring, until I got up to serve more food mid-meal and Max slid in my seat and cracked up. We all did, and it felt good. My nerves were pretty frayed.

I worried about the second seder. I let Max know ahead of time that he was free to sit in another room and chill. He hovered nearby as we started, then he decided to join us. While he didn't want to eat, he chatted. He was excited that April was coming, and it would be getting warmer. He discussed plans for next Passover.

"Let's eat out!" he said.

Hmmm. I guess he is the wise child, after all.


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