Friday, January 31, 2020

The Disability Blogger Weekend Link-up is open for business

What to do if you're new  

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: How Early Intervention helps special needs parents

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, January 30, 2020

Another toilet training win (yeah!) and the same old woe (sigh)

One of the biggest concerns I have about Max's future is how independent he will be. When your child with special needs is little, your worries are all about what your child will be able to do. Now that Max is a teen and I have a better handle on that, I just want to know how he'll function when I'm not around. I don't just mean when I'm gone from this earth (although that thought is always lurking in the back of my mind), I mean in situations like work or a hangout at the mall with friends. We've recently hit another milestone but still, I just don't know.

Max has been toilet trained for a good seven years now (here's the backstory on that). Pulling up his pants has remained a challenge. The OT who's come to our home for a few years and who recently moved away (ugh/crap/damn/on the hunt for a new one) had been working on it. Grasping an elastic waistband—the only kind that work for Max—is tricky for him, ditto for the motion of drawing pants up. He's had some success but he sometimes just gives up and begs us to do it, or he forgets to pull up the back and walks around the house with his butt hanging out, which gives Ben a good laugh but sure isn't doing Max any favors.

Max's school OT recently emailed me to ask if I'd heard that he had pulled up his pants on his own. He has to go to the nurse's office for assistance with toileting—because of the pants prob, his ability to clutch t.p. is challenged, and his arm movements do not include the ability to reach behind.  

I actually hadn't heard about Max pulling up his pants at school. So when I stopped by there this week, I asked one of the nurses what was up. She proceeded to tell me that one day, Max had been taking a longer than usual time in the bathroom—he typically called her in when it was time to pull his pants up. And then, he opened the door and walked out, his pants all pulled up. And that had consistently been happening at school for the last couple of weeks. 

As is often the case, Max can be way more independent at school than he is at home, where he knows Dave and I will do things for him. My classic example of this is from years ago, when I showed up at his school for a conference, peeked into his classroom and was astounded to see him seated at a table with a bowl shoveling his lunch into his mouth. I walked in to say hi. Max shook his head "no"—he didn't want me to see him feeding himself. Because that little smarty pants was only spoon fed at home, even though it turned out he'd been eating lunch on his own since the start of school.

Now that I am onto Max (BUSTED!), we will be doing our best not to lend him a hand with his pants. The other challenge is something I have yet to find an answer for. I've asked adults with CP, and some have suggested various t.p. toilet aids but so far I haven't found anything that Max could manipulate. His OT at school did, however, recently sent a link to a new clip-on bidet called, um, Tushy. No electricity is required, though if you want the "spa" version that releases warm water, your toilet has to be next to a sink. It sounds promising. And yeah, maybe Max should move to Europe instead of L.A., because bidets are more common there. Then I started fantasizing about public toilets having a gadget like this, a true special needs mom fantasy. But who knows, maybe someone will invent an electronic wiper that Max and other people with cerebral palsy could use.

As always, I have fears about the future—but hope, too. 

Wednesday, January 29, 2020

Nothing says typical like sibling fights

I was driving Sabrina to a friend's house this weekend when Dave called. He'd taken Max and Ben out for lunch. "THE BOYS ARE ABOUT TO KILL EACH OTHER!" he shouted. In the background, I could hear yelling.

Assuming that things were not actually going to get lethal, I told Dave to call back because I was driving. Sure enough, when he did the boys had calmed down. But I totally got how freaked out he was: Seeing your kids fight is the worst. And Max and Ben are going through a fighting phase. For anyone who wonders whether families that have a child with disabilities are typical, you'd have to see these boys going at it.


Mostly, they're competitive. They both want to be first everywhere—first to be dressed on weekend mornings, first to the car when we go out, first into the restaurant, first to the door of our house when we get home. Max has had these impulses over the years but now Ben has the "I'M FIRST!!!" bug, bad. And they can get physical: Ben will swat at Max's butt or push him. Max will whomp Ben on the head. They'll both roar and shout. When Ben is losing it, he'll take a flying leap at Max and then Dave or I will have to separate the two of them.


We have been down this road before. Max and Sabrina had their fair share of squabbles, too, and now they're mostly pleasant to each other. Although for Sabrina's birthday yesterday, all Max wrote on her card was "I want to move to Los Angeles, CA."


I think back to when I was growing up, and how much it pained my mom to see my sister and I fight. We sometimes went at it like Max and Ben do, yelling and hitting and all. I can hear her now, close to tears: "GIRLS! Stop fighting!" My torture of choice was chanting to my sister, "You're not going to have a birthday party! You're not going to have a birthday party!" Ben and Max torture each other with mentions of Los Angeles, where Max hopes to someday move.

Max to Ben: "You're not moving to Los Angeles with me!"

Ben to Max: "You're not moving to Los Angeles!"

We try to even things out: Ben can be first in the car, Max can be the first into the store. "Try" being the operative word. I'm not particularly concerned; I figure they'll grow out of it. They have their moments of sweetness. Typically, Max will lean over and kiss the top of Ben's head. Ben will say "NO!" but then he'll grudgingly give in, and that's how it goes.

The other day, Ben and I were at home doing some cooking together.

"Max was being really nice a little bit today!" Ben announced.

I'll take it.

Tuesday, January 28, 2020

This is fifteen

Fifteen is loving sports and selfies and and so many friends and cuddly clothes and camp and sushi and anything fun. And did I mention shopping?

Fifteen is the girl whom all the other moms—and I do mean all—regularly call "so nice."

Fifteen is never coming out of your room at night except to shower at 11:40 p.m.

Fifteen is never waking up in the morning, no matter how loud the music blasts from your Echo, even that week when we blasted Barry Manilow.

Fifteen is being a great big and little sister.

Fifteen is appreciating good books, good shows and good trips. And did I mention shopping?

Fifteen is being a better baker than your mom is.

Fifteen is really being into volunteering at the program Max has attended for years and the Saturday morning service for adults with disabilities.

Fifteen is having a natural hair color that people pay good money for.

Fifteen means knowing just how to use heat styling tools and even remembering to turn them off.

Fifteen is being embarrassed when your mom compliments you in front of other people or does something awful in public like talk, laugh, breathe or exist.

Fifteen is acing tests and school reports.

Fifteen is having impressive game skillz.

Fifteen is teaching your little bro your dance moves.

Fifteen is knowing everything, but that's definitely incorrect, because I am the one who knows everything.

Fifteen is making baskets like this. Just, whoa. How did you even DO that?

Fifteen is also being amazing at lacrosse and cross-country and whatever sport you try.

Fifteen is pulling off anything you're determined to do.

Fifteen is being a favorite babysitter of kids in our neighborhood.

Fifteen is not agreeing. Then again, "No!" was your favorite word when you were 2.

Fifteen is still being a Daddy's girl.

Fifteen is not being able to see the floor of your room because of all the clothes lying there, but also knowing exactly how to organize it.


Fifteen is forever being "Mena" to Ben.

Fifteen is forever being our girl.

We love you, darling girl. Happy fifteenth birthday! May it be the most amazing year.

Monday, January 27, 2020

How Early Intervention helps special needs parents

There was an excellent piece in the New York Times Parenting section last week by Emma Fitzsimmons, the City Hall bureau chief: How Early Intervention Changed My Son's Life. Like my Max, her son had a stroke. His was in utero; Max's happened during his birth. At 2, Emma reported, her son "is walking and talking and keeping up with his peers." She noted that Early Intervention is one of the reasons he's doing so well, and what an incredible program it is, one that some parents don't know about or tap into.

Early Intervention is a godsend for special needs parents, too. Max was my introduction to the world of disability; the Early Intervention therapists were my saintly tour guides.

I reached out to EI while Max was still in the NICU. A consulting neurologist had advised us to get Max as much therapy as possible, a social worker told us about Early Intervention, and I was raring to do whatever I could to help him. We were still in shock about what had happened, and I felt so helpless and powerless. Here, at least, was something we could do for him. I spoke with the EI supervisor and telling her about what had happened to Max and all that he was at risk for, and she agreed he was a candidate. He was enrolled at two months old.

By the time he was 21 months old, Max was commando crawling. Like an army soldier, he'd use his arms to propel his body forward—he always had determination, this boy. Max had no words. He couldn't pick up objects. I was a walking ball of anxiety, but I often found consolation in his therapists, not to mention, salvation.

There was Mindy the physical therapist, who would position Max on his hands and knees, hover over him and move his arms and legs, literally teaching him to crawl. Mindy, the angel—angel!—who felt confident that because Max could bicycle his legs, he might someday walk. It was she who recommended the Pony gait trainer, and Max soon learned to zoom all around our first floor. Oh, how he loved that thing. I can only imagine how it felt: After not being able to move any of his limbs very well, he found freedom. We padded corners with pieces of Dr. Scholl's Moleskin (one of the most unfortunately named products ever). Later, she recommended the Laye posterior walker that Max practiced with on our street. That contraption lead to his first independent steps. On his third birthday, he walked across his room from Dave's arms to mine.

Nafeesa, the occupational therapist, would wrap Max's chubby little hands in Coban wrap—the stuff you use to wrap sprained ankles—to keep his fisted fingers more open so he could learn to grasp. She suggested getting Theratogs to give Max's trunk more support and better alignment and, later, the Benik hand splints Max wore to keep his thumb isolated so he wouldn't tuck it in. She stayed with us for years after Early Intervention ended. The speech therapists came and went (they were the hardest therapists to get through EI) but we lucked out and found Jeri, a private SP who still sees Max to this day.

We also had a teacher through EI to help Max learn basics like colors and letters and a visual specialist who came to us from an association that served the visually impaired (Max's vision in his early years was affected by the stroke). One weeknight a week, Dave—often accompanied by his mom, for company—drove Max to another physical therapist. On weekends and Fridays when I worked from home, we took him to alternate therapies including aquatic therapy, hippotherapy (horseback riding) craniosacral therapy and hyperbaric oxygen therapy. Soon enough, we'd add feeding therapy, too.

Early Intervention is a gift to working moms. The wonderful nanny we had didn't drive, but I couldn't have expected anyone to drive him to the ten-plus sessions he had every week. The therapists would faithfully arrive every day, and we would communicate mainly through notes. I didn't feel guilty about going to work because I knew he was in their capable hands.

The therapists patiently answered my kajillion questions about how limbs and muscles and brains work, how the other kids they'd helped were doing (#goals) and what else Dave and I could do for Max. They showed me how to enable him: objects placed out of his reach could encourage him to  move his body toward them, my Boppy breastfeeding pillow could be used to support his back so he could sit up, a mirror propped in front of him could engage him and further encourage him to stay upright. (That's Max at 10 months old in the picture above, supported by his OT.)  We'd incorporate exercises they'd given us into Max's routines: bicycle his legs while changing his diaper, massage his hands in the bath, rub his cheeks and jaw with a washcloth to loosen them up so maybe he'd make sounds.

Sometimes, the exercises overwhelmed me. I felt this tremendous amount of pressure to be the one to get Max to do stuff. I just wanted to enjoy my chubalicious baby. I just wanted him to be OK. There were entire weekends when Dave and I would blow off the exercise regimes, take Max to the park or to a museum and just be a family. Our pediatric neurologist had told us to expose Max to as much as we could. He was seeing and learning when we explored new places. He was feeling the warmth of our love and that was therapeutic, too.

My soul and spirit needed healing from all those "He may never do ___" words I'd heard from the curmudgeonly lead pediatric neurologist at the hospital where Max was born. As I'd told the social worker when I complained about the pediatric's neurologist's negativity, "If I don't have hope as Max's mom, who will?" I found that hope in Early Intervention. Putting my sweet baby in the therapists' capable hands gave me comfort like nothing else. Their determination to help Max progress was the confidence I needed. Their

While it isn't part of Early Intervention therapists' jobs to provide therapy to parents, their reassurances—not false promises, just cautiously realistic hope—helped offset the NICU nightmare that haunted me and made me despair. The conversations I had with them about how Max was doing, sitting on the floor as they worked Max's limbs and tried to coach movements and sounds out of him, were my talk therapy. Their encouragement was my anti-depression medication, although I probably should have gone on meds, a doctor later told me—there is no shame if you need them. When they agreed with me that indeed my boy was gifted with cuteness, I'd beam.

Early Intervention therapists changed Max's life, as so many do for so many little ones. They changed my life, too. The EI therapists enabled me to be a good mom to Max. They were rays of sunshine, warmth and solace in the greatest period of darkness in my life. For that, I am forever grateful.

Friday, January 24, 2020

The Disability Blogger Weekend linkup has arrived

What to do if you're new  

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: Everything we grew up thinking about kids with disabilities was wrong

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

Thursday, January 23, 2020

Which books do you remember from childhood? A list to give you all the feels

The other night, I read Ben Bread and Jam for Frances by Russell Hoban (with illustrations by Lillian Hoban, his wife). It's a book I remember my mom reading to me as a kid, and it is one of my all-time favorites. The story involves a feisty girl-bear who decides she's only eating bread and jam, and who soon realizes that—spoiler alert!—that can get old, fast. One day, she watches a friend at school unpack his lunch.

What do you have today?" said Frances.

"I have a cream cheese-cucumber-and-tomato sandwich on rye bread," said Albert. "And a pickle to go with it. And a hard-boiled egg and a little cardboard shaker of salt to go with that. And a thermos bottle of milk."

Oh, that cardboard shaker of salt: How I loved it. I didn't know what a cardboard shaker of salt looked like, but I thought it was the most amazing thing.

Turns out I am not alone with the cardboard salt shaker obsession, as I discovered when I asked people on Facebook which books they recalled their parents reading to them. People mentioned books I'd long since forgotten, along with some I never even knew existed. My childhood was devoid of Poky Little Puppy, though somehow I still turned out pretty OK.

Reading is the activity I most enjoy. As a kid, I was friends with our local librarian. Every week I'd take out the maximum number of books (ten), haul them home and return the next week for a new batch. One of my greatest joys as a parent has been introducing books to my kids. This took on a new level of importance with Max, starting with his NICU stay. One of my most vivid memories of that time is standing next to his incubator as he lay there, unconscious, and reading Oh, The Places You'll Go! to him through the vent holes. I choked out the words in between sobs, aching to encourage him and myself, too. 

I filled Max's bookshelves to capacity. I thought reading could encourage him to articulate sounds and words. I wanted books to open up his mind, brain damage be damned. As I read, I'd talk about the colors on the pages and what was happening in the story. I'd ask questions and answer them myself until he learned to nod yes and no. Max was finicky, but I got him hooked on books about trains, and buses. Later he got into books that related to his obsessions—the color purple, Lightning McQueen, fire trucks. Today Max can read very well, and while he doesn't care much about books, I have hope that he'll come around.

Reading to Ben at bedtime is a highlight of my day. I'm always looking for new books, and I'm planning to get a bunch my Facebook crew mentioned. Here's a list of the books friends most fondly remember from their childhoods. I hope they give you ideas, along with the warm-fuzzies.

Harry the Dirty Dog
Chicken Soup with Rice
Fish is Fish 
Tiki Tiki Tembo
Pat the Bunny
In the Night Kitchen
The Story of Babar

Gerald McBoing Boing
The Poky Little Puppy
The Little Engine That Could
The Story of Ferdinand
Lyle, Lyle Crocodile
Green Eggs and Ham
A Fish Out of Water
Richard Scarry Books

The Snowy Day
Edith and Mr. Bear
A Child's Garden of Verses
Where The Wild Things Are
Curious George
I Love You As Much
Goodnight Moon
The Runaway Bunny
A Bear Called Paddington

Leo the Late Bloomer
Mike Mulligan and his Steam Shovel
Are You Mother?
Hop on Pop
Morris the Moose
Harold and the Purple Crayon
Put Me In The Zoo
Good Night, Little Bear

Caps For Sale
Dr. Seuss's Sleep Book
Button Soup
But No Elephants
The Giant Jam Sandwich
Cloudy With a Chance of Meatballs

Where The Sidewalk Ends
Make Way for Ducklings
Blueberries for Sal
Little Bear
One Fish Two Fish Red Fish Blue Fish
The Velveteen Rabbit

Wednesday, January 22, 2020

When you enable your child in weird ways

Max's favorite phrase these days is "It's disgusting here!" As in, I don't understand why you are forcing me to live in an area that's cold if I could move to sunny Los Angeles. His second favorite phrase is "I don't like it here!"

Me, I refuse to give in.

"I like it here," I say. "I like having different seasons. I like snow."

Max will look at me and shake his head.

"No, it's disgusting here!" he'll say, once again with feeling. "I'm moving to Los Angeles!"

Repeat, repeat, repeat.

Dave takes the opposite approach—he totally enables Max. When they are in the car, they only listen to KIIS radio on Sirius XM, a Los Angeles station. Dave got Max a California phone number for his Apple watch. Then there are the daily pep rallies. The two of them are up early in the morning, our living room is right below our bedroom and I often wake up to the sound of them gleefully shouting.


Dave: "Yeah! And you're going to move to Los Angeles!"

Max: "YEAH!"

Dave: "Because it's cold here and it's snowing and who needs that?!"

Max: "YEAH!"

Dave: "And you'll get a big, cool house!"

Max: "YEAH!"

Dave: "And you'll go to In-N-Out Burger!


Repeat, repeat, repeat.

And I'll lie in bed and wonder whether Dave should be doing that. His enthusiasm is real—like Max, Dave can't stand the cold. Palm trees are one of his favorite things in life. He and Max could be very happy together in L.A., although there are three other members of our family.

Is it wrong to humor Max this way? Part of me thinks that Max is well aware this is all talk and fantasy. Part of me isn't so sure. And yet, he feels certain that L.A. is his home.

This is not to be confused with all the other ways we have fueled Max's obsessions/interests over the years, buying him all things Lightning McQueen, referring to him as Purple Car Wash Spaghetti Max when he went through several phases at once, going through car washes multiple times (on the same trip), visiting fire stations everywhere. When Max is passionate about something, he is all in.

Sabrina chooses not to engage. Ben can go either way. If Max pisses him off, he'll announce "MAX!!! You are not moving to Los Angeles!" If it's a good moment, he'll remind me that Max is moving to Los Angeles.

Besides pep rallies, Dave and Max's other favorite activity involves asking Alexa what the weather is in Los Angeles. Dave usually does the talking because Alexa doesn't yet speak Max.

"Alexa! What is the weather in Los Angeles for the next week?"

Alexa will pull up the forecast and Max will scan it and happily point and say "Wow! 77 degrees!" or whatever the highest temperature is.

Repeat, repeat, repeat.

I mean, yeah, I did buy him a Los Angeles sweatshirt when we visited in December. But that's what tourists do, right? And yeah, so what if I let him wear it a few days in a row, I wash it! Mostly!

Anyway, I am here to report that Dave has a business trip in L.A. mid-February and Max has that week off school and....


Tuesday, January 21, 2020

Everything we grew up thinking about kids with disabilities was wrong

A mom I met this weekend who has a teen son with Down syndrome was telling me what happened after his birth. As she sat there, sobbing, a doctor asked, "Didn't you have chromosomal testing?" We both agreed how mind-boggling awful that was, and discussed how things had shifted in recent years, with more and more women choosing to have babies with Down syndrome.

It got me thinking about how perceptions of disability have changed since I was a kid and how my Max, who has cerebral palsy, has transformed my thinking. The stereotypes—that people with physical or intellectual disabilities are helpless, incompetent, clueless, pathetic—are still around. But society is increasingly beginning to accept and understand that:

Kids with disabilities are not tragedies
When you have a baby who's born with a disability, you may struggle mightily. Our culture does not prepare parents for the possibility of having a child with disabilities—if anything, it makes you fear having a child with disabilities. Yet I grew to learn, as so many parents do, that our children may not be what we expected and they may not be what is considered "typical" but in the end, they are children who are as full of of life, love, happiness, curiosity, brightness, sugar and spice and everything nice as any children. And they are children every bit as loved as our other children.

Kids with disabilities are not happy "despite" their disabilities
There have been times when strangers have commented how amazing it is that Max is so happy, as if it is mind-boggling that anyone with cerebral palsy could be happy. It's true that Max is a naturally cheerful sort, but CP is also a natural part of who he is. While there are times when he gets frustrated because his arms or fingers don't do what he wants them to do, he doesn't feel sorry for himself. For years, when he said something and people couldn't understand him, he'd lean closer and say it more loudly. He didn't think anything was wrong with his speech; he thought that there was something wrong with other people's hearing. My boy Max is content with who he is.

Kids with disabilities have all sorts of abilities

Looking at a child in a wheelchair, some people see only a child who cannot walk. Looking at a child with Down syndrome, some people see only a child with intellectual disability. But our children are multi-faceted; their disabilities are one component of their being. They can sing, dance, make art, ace tests, perform in shows, win spelling bees and beauty pageants and athletic competitions, you name it. They just do it their way. Here's Max singing Let It Go with his music therapist. Here's Max booking at the Special Olympics race he participated in. Once you stop thinking that there is a "right" way of doing things, you can see all the abilities that exist in this world.

Kids with intellectual disability are bright
The thinking that kids with autism tend to have phenomenal recall, particularly for numerical facts—baseball stats, birthdays, phone numbers—is largely based on the 1988 film Rain Man. Only a minority of kids with autism have so-called savant syndrome. The others can possess all kinds of smarts, and the same goes for children with intellectual disability. We were told from the start that Max, who had a stroke at birth, would have severe cognitive challenges; you wouldn't know that when he reads. Math is not his strong suit; mine, either. He has extremely high Emotional Intelligence, which is more than I can say for some adults I know. He quickly perceives when someone is upset, and tries to console them. He also has an amazing sense of direction, and has let me know when I'm going the wrong way—Dave and I joke that he is our human GPS. You can look at smarts as the kind that get people into Harvard. Or you can open your mind and consider all the kind of smarts there are in this world.

Kids with disabilities can have loads of personality 
You know those people who walk around unsmiling but who, when you talk with them, turn out to be really funny? The same can go for children with disabilities: you can't figure out their personalities (or anything, really) just by looking at them. Sometimes, their expressions may seem dour, perplexed or out of it. Sometimes, they do not verbally communicate. Some kids won't make eye contact. But once you do connect with them, in whatever way, you discover their playfulness, sense of humor, intelligence and the other traits that make them who they are.  Oh, and don't mistake them for sweet little angels—they can be naughty, frustrating and exasperating. Just like any children.

Kids with disabilities do not lead sad lives
They have families who adore them, joke with them, tease them affectionately and love them up as much as—wait for it!—any child. Most things that typically-developing children can enjoy—activities, music or dance lessons, sporting events,  parties, summer camp, seeing shows, trips with their families—children with disabilities can enjoy. It may take effort to ensure that places are accommodating and accessible, or to find ones that are. Some parents need to figure out how to calm a child with sensory needs. But it is possible.

When I met that other mom this weekend, we were on a Girl Scout winter camping trip. I found out that the camp offers a family camp weekend in the fall, and asked the director how Max could join in. He walks well, but can't do long hikes or climb. "Oh, no problem, we have all-terrain wheelchairs," she replied. Maybe that wouldn't have been true decades ago, or even when Max was little, but now children and adults with disabilities could be included in hikes. I felt happy and hopeful. It reminded me how far inclusion has come in recent years. People just need to make an effort...and, of course, see the possibilities.

Friday, January 17, 2020

The Disability Blogger Weekend Link-up awaits you

What to do if you're new  

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 "ock you!" milestone

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

Thursday, January 16, 2020

If American Girl made a Special Needs Mom doll

The news came out at the end of last month that American Girl's Doll of the Year was Joss, a surfer babe with a hearing aid whose disability is part of her story.

I've been pondering this, and have decided that it's time the company released a Special Needs Mommy doll. Let's call her Sydney Sotired.

The doll would feature:

-- A slightly harried look on her face
-- Hair in ponytail
-- Phone glued to her ear 
-- Black yoga pants with slight hole in the crotch nobody will even notice
-- A voice that, upon pressing a button, will say:

• "Stop kicking the table legs right now!"
• "Oops, sorry, forgot to fill out the form."
• "What are you staring at?"
• "Yes, I did most of the therapy exercises you recommended!"
• "We need a table in the quiet part of the restaurant."
• "You did it, sweetie! Yeah!!!"
• "We're trying ABA and adding more OT, meanwhile the PT at school told me his SLP is leaving. I'll discuss it at his IEP next week."
• "What do you mean the doctor has no appointments for five months?!"
• "I just need to close my eyes for five minutes. Just. Five. Minutes."
• "Sorry, honey, we can't go sit at the train station again today."
• "He's not a brat, he has special needs."
• "Don't be sorry, he's a great kid!"

Accessories will include:

-- Lip balm, because that is about all the makeup she has time for
-- A little purse filled with fidget toys and goldfish cracker crumbs 
-- "I survived the IEP" coffee mug
-- Mini EpiPen (likely cost: $300)

Pre-order now!

Photo: American Girl

Wednesday, January 15, 2020

The ock you milestone

For years, I joked that if Max ever realized I had a blog about parenting a child with disabilities and told me to eff off for doing it, I'd be thrilled because it would mean he'd reached a certain level of cognition. These days, Max understands that I have this blog, and occasionally writes posts here. And we have reached that eff off milestone—just not in the way I ever expected.

It started a couple of months ago. When I arrived home from work, our sitter was standing by the door to greet me. "Max said something pretty strong to me," Janet said, mysteriously. Max heard us talking and walked over.

"Um, what was it?" I asked.

Janet looked at Max. Max looked at me. I looked at her.

"OCK YOU!" Max announced, to no one in particular.

OMG. What?! Where had that come from? Well, er, um, Dave and I are not beyond saying it. Max could have also heard it on gaming videos he listens to on YouTube, or from another kid at school. I mean, he's 17. This is a pretty popular teen phrase.

"Oh, he doesn't know what it means," Janet said, trying to reassure me.

"I think he knows what it means," I responded.

Sensing some good drama was happening, Max's little bro joined the discussion.

"Max said the f-word!" Ben announced.


"How did you know what that means?" I asked Ben.

"Sabrina told me!" he announced, ratting out his sister.


And there I stood, Worst Ocking Mom of the Year.

I have to admit, though, I felt a twinge of: Wow, this boy. Max was acting out and pushing boundaries, as is typical of teens. I instinctively tend to appreciate it when he acts age appropriately. So as bad as it was, it was a sign of maturity. (Though I'm not sure the developmental pediatrician would agree.) Max was also articulating words I'd never before heard him say. He understood what they meant. And his enunciation was pretty clear; I could hear the "k" at the end. Consonants are really hard for him.

I get how awful it may seem to take any delight in a cursing teen. But I am a parent who was told my child might never talk and that he could have serious cognitive issues. I'm a parent who used to despair when I drove my baby around in the car and he didn't babble or make a single peep, like babies do. I'm a parent who spent countless hours programming communication devices to help her child express himself. I'm a parent who does serious happy dances over any new sound Max makes. And I am a parent who has spent a bazillion dollars in speech therapy over the last seventeen years. Can you blame me for that twinge of "wow"?

Well, things got old, fast. Soon enough, Max was blurting the phrase if he got mad at me or Dave. Sometimes, he'd say it angrily. Sometimes, he said it with a smile on his face because he knew he was being obnoxious. Dave and I tried to contain it—we discussed that it was not nice to say that word, to his parents or to anyone. We explained that when he was mad or frustrated, he could say "I'm mad!" We warned him. We took away stuff as punishment.

Still: "OCK YOU!!!"

When we were out in public, some people had no clue what Max was saying. But others figured it out, and would either grin or glare at me and Dave. Worst Ocking Parents of the Year!

I was pretty sure Max wasn't saying the words at the religious program he attends on Sunday. I felt the same about school but, again, I sure wasn't going to ask. That was confirmed when this came home in his backpack the other week:


Also: Awesome.

Also: Proof we had done something right as parents.

All that and we were able to use the award as leverage: "Max, you are not going to keep the kindness award if you keep using the f-word!" He stopped saying the words to Janet. His behavior is otherwise fine, and I figure it's a phase that will pass. That or we'll be getting calls from his job coach down the road.

I draw the line at programming "OCK YOU!!!" into his speech app. I think? I dunno. Sigh.

Last weekend, the speech therapist who's seen Max since he was two years old came by for her standing Saturday morning appointment. Before she headed out, we talked about Max's overall progress.  She noted that he was trying, but there were some letters he would never be able to say.

"Which ones?" I asked.

"I don't think he'll be able to do B," she said.

"Really? I asked.

"No, or P," she said. "Anything requiring lip closure."

"What else?"

"F will be impossible for him, too," she said.

At that, I burst out laughing.

"I think he'll be OK," I said.

Tuesday, January 14, 2020

The evolution and non-evolution of the r-word

Dave and I are still making it through the final season of Orange is the New Black and yes, I realize how pathetic that is. In one episode, inmate Tiffany Doggett gets a G.E.D. practice test back from a teacher. The teacher points out that she copied answers from another inmate, except she transposed some letters. He asks her if gets dizzy when she stares at maps and she acknowledges that she does. He tells her that he thinks she has a learning disability. She looks dismayed.

"I am not...r-word," she says in an uncharacteristically soft voice.

He informs her that signs point to her being dyslexic, and a diagnosis is good because once they know it they can get help. He tells her about well-known people with dyslexia: Steve Jobs, Whoopi Goldberg, Tom Cruise, Henry Winkler. They bond over their mutual affection for Sister Act.

Back at the end of Season 1, I remember flinching when Nicki auditioned for the prison pageant with a joke that ended this way: "And finally, the penguin goes, 'He's not an eggplant, he's retarded!"
Now the show's writers know better than to use the word. That's progress. And yet, not so much. This character flinches at the thought of having a learning disability, and that's sure not doing any favors for people like my Max. Once again, the idea is being perpetuated that a disability is Not Good.

Is it in character for Tiffany to have this sort of response? Sure. But since when is this show realistic? Couldn't the writers have had Tiffany express her dismay without even referring to the r-word? Well, sure they could have—they are writers, after all.

Some things have changed in the eight years since I did the Twitter experiment where I asked people to reconsider their use of the r-word. Most people I know now get it, and I don't overhear teens using it like I used to when I'm out. Still, it pops up on social media. The New York Giants ditched player Janoris Jenkins after he called a fan that word on Twitter; he defended himself by saying that where he was from, they use all kinds of words as slang and apologized for offending someone.

Those of us who have spoken out about the r-word over the years have often been subject to dissension along the lines of "If not that word, then another will take its place." That's true, to be sure. Still, the underlying point is being aware of how we perceive and talk about people with intellectual disability. The dramedy The Peanut Butter Falcon (which deserved an Academy Award nomination, dangit!) does a great job of portraying the humanity of disability—as in, people with intellectual disability are full-fledged human beings with hopes, dreams, senses of humors and even strong drives to party.

Enough with the depiction of disability as undesired, sad and tragic. Here's hoping Hollywood can keep it more real.

Monday, January 13, 2020

When children with disabilities can finally express their thoughts, hopes and dreams

I read an article this weekend about a nonverbal teen with autism in Chicago, Mitchell Robinson, who until a few years ago relied solely on pictures and some sign language to express his wants and needs. Then his parents realized that he could spell. These days, he  points to letters on a board to communicate and also uses an iPad that speaks what he writes.

"It changed everything because I could get my wants and needs met," Mitchell typed to a reporter from the Chicago Tribute, expressing his gratitude for spelling-based communication. "I am very happy people are finally figuring out how to reach people like me because it is a human rights issue he needs to solve. Mitchell's started a blog, Mitchell's Life with Autism, that he independently types on a keyboard.

The article brought back all the feelings about Max's relationship with alternative communication. My boy has always been a bright, curious and social child but when he was younger, he lacked the speech to express himself verbally—cerebral palsy messes with your muscles. Oral-motor challenges and muscle weakness in the head, face, neck and throat can hamper a child's ability to speak sounds, form syllables and articulate words. There's a host of associated medicalese: dysarthia, which involves trouble coordinating the muscles used for speech including the lips, tongue and vocal folds and apraxia, a condition in which the brain's messages for speech don't correctly make it to the mouth that can also affect children with autism. There's also dyspraxia, a condition affecting physical coordination that makes it hard to plan and process motor tasks including language (you can have dyspraxia without any other neurological abnormality).

Alternative communication started simply, when Max was in Early Intervention, with pointing to pictures of food and toys in a binder and laminated cards imprinted "yes" or "no." He went on to use a Dynavox, although at the time it was too heavy for him to carry and clunky for parents to program.
Over time, Max communicated through an expanding vocabulary of spoken words and gestures.

In the spring of 2010 (cue the angels singing), when Max was 7 years old, the iPad came out. By June of that year, thanks to his progressive-minded school speech therapist, Max was trialing it and the Proloquo2Go speech app. This was also a major developmental advance because the iPad encourage him to isolate his pointer finger, no small thing for a child with spastic cerebral palsy.

The first time I saw Max try the speech app, he gleefully told me who his best friend was.

I have never stopped being grateful for the iPad and the world it opened up for Max (when Steve Jobs passed away, I paid tribute to him for inventing it). These days, Max uses the TouchChat with WordPower app mainly at school; at home, he is all about using his Apple watch. He isn't able to coordinate holding a phone and pecking out words, but he can do it from the watch. So basically he's now enabled to text me every hour or so that he wants to move to Los Angeles, aka his "home."

This weekend, Max's Early Intervention physical therapist stopped by the house, and Max texted me while I was chatting with her on our porch. I showed her the text. "If you would have told me back then that someday Max would be texting me, I'm not sure I would have believed it," I told her, and we both smiled.

Listening to a person who uses alternative communication, whether they're typing out thoughts, using speech to text or eye gaze technology, takes patience and a little extra time. But technology continues to evolve. I've been keeping my eye on the Voiceitt app, which is in beta testing. It learns a person's unique speech patterns and then translates them to speech and text on an iPhone or iPad. Exciting, right? Max has never mentioned his appreciation of communication technology, but as his parent, I know just how game-changing it's been.

"I think people need to stop underestimating us because our perspective is as important as everyone else's," Mitchell Robinson said. "We are intelligent and amazing people who deserve the benefits of open communication."


Friday, January 10, 2020

The Disability Blogger Weekend Link-up: Now with more posts!

What to do if you're new  

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: Those times when it's best *not* to help your child with disabilities

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, January 9, 2020

Those times when it's best not to help your child with disabilities

One of my guilty pleasures as a mom is spying on my kids. By that I mean, seeing how they act when they don't know I'm around. In recent history I've enjoyed watching Ben playing in preschool as I peeked through the door to his class, Sabrina face-timing with a friend at our kitchen table and Max chilling in the teen club of the cruise we were on.

We weren't totally sure how that would work out—the teen center doesn't have a check-in policy, and teens come and go as they please. I'd spoken with them in advance about Max and they were game to keep an eye on him and page us anytime he needed a hand.

We got to the point where Max was able to get to and from our room to the teen center and vice versa by himself (he had a cruise digital wristband that enabled us to know where he was). Max has an amazing sense of direction, but this was a giant independent step. Staffers told us that he was playing a lot of video games and also enjoying skeeball and air hockey with other teens hanging at the center.

One afternoon, I stopped by the ship's buffet to grab lunch and spotted Max standing with a group of teens by a food station. I ducked behind a pole so he wouldn't see me, and I watched. I felt a stab of anxiety—if they were there to grab food, Max would need a hand with that. But the teens stood there, not much talking with Max. He started tapping on his Apple watch, likely texting Dave.

I didn't know what was going on, but I was sad that the teens weren't talking with Max. He, however, did not seem to care much and was doing what many teens do when they need to occupy themselves: look at their mobile device.

I ached to go over to him. But I held back, and went off to grab some salad and cheese. For one, I didn't want Max to know I was watching him and I didn't want to embarrass him. But I also knew that he needed to learn to navigate social situations on his own.

As I rounded a corner, though, there was Max and the teens again. He saw me and waved hello, and I casually walked over. One of the teens explained that they were on a scavenger hunt. Ah, so they hadn't actually been eating, just looking for items on a list. While I'd wished they'd found a way to better include Max, this was nothing I could control.

One of the toughest parts of having a teen with disabilities is realizing that you won't always be there to help them—and accepting that in letting them handle things on their own, you actually are helping them.

My heart has trouble hearing that. My head, it understands.

"You OK?" I asked Max.

"Yeah!" he said.

"Great! See you later!" I said, and walked away.

When I turned back to look one last time—I am weak, so weak—Max was staring at me with a grin on his face, because he knew I was going to do it.

Wednesday, January 8, 2020

The family that doesn't play together stays together, and other realities

I was chatting on my Facebook page about the cruise we went on over winter break, from L.A. to Mexico. Another mom commented that cruises hadn't worked out for her family, and how did we manage? The answer was easy: We didn't hang out together all the time.

Since Max and Sabrina were little, Dave and I have regularly gone our own way on weekends and during vacations with the kids. We had to—Max was often afraid to go to events or participate in activities. Even eating at restaurants could be a challenge, as the noise level and hustle and bustle were too much for him. Or he just wasn't physically able to handle the outing.

Once in a while, when I'd see photos on social media of families hiking on local trails or traipsing through the jungles of Costa Rica, I'd feel a pang of "we-can't-do-that." But it would pass. As Max got older and his sensory issues receded, our options grew too and we were able to enjoy more things as a family, including seeing shows. Then we had Ben and our family dynamics changed all over again.

With two teens and a four-year-old, it's basically impossible to find activities we all enjoy doing at the same time, other than going to theme parks and eating out and even that is hotly debated. I'll head to a birthday party with Ben, Max and Dave will go have steak for lunch (Max is still in his steak phase), Sabrina will hang in her room and do homework or stare at her phone or stare at her phone some more. Or Dave will take Max and Ben to a playspace and Sabrina and I will go to a show. We did pull off a good amount of togetherness on our London trip last spring, although it entailed a fair amount of whining and even roaring. 

On the cruise, Max mainly wanted to hang out in the teen club, Sabrina liked to be there too, and Ben decided the hot tub was the place to be (with a daiquiri). Me, I just wanted to lie on a lounge chair and read my New Yorkers. Dave enjoyed rambling around, sometimes with Max or Sabrina. One afternoon he got a massage and I hung with Ben at the hot tub.

We had some breakfasts together and all our dinners. This was somewhat of a miracle, as Max has traditionally wanted to dine only in-room when he was little and later in, on in the teen club. But Princess Cruises didn't let teens eat in the teen center. And so we lured Max to dinner with promises of steak and pina coladas. And yes, my kids like fruity virgin drinks.

We find our family togetherness where we can. I don't feel like we're missing out, and the kids don't seem to, either. Once again I say: Whatever works for your family works.

Tuesday, January 7, 2020

Child will go on thrill rides at theme parks, said no developmental book ever

I settled into the row behind Max, Ben and Sabrina as we boarded the Radiator Springs Racers ride at Cars Land. When we visited Disneyland five years ago, Max was too scared to try it—he stood behind the railing and peeked over.

And now, during our trip there the other week, he couldn't wait to go. This was a real milestone, and I had to take a video. Progress comes in all shapes and forms.

 To Max, it was one serious joy ride. To me, it was a victory lap.  

Monday, January 6, 2020

My trip to Los Angeles: a post by Max

I want to move to Los Angeles.

I went to Disneyland and Universal Studios.

I rode Lightning Mcqueen ride

I went to race track

I saw a show and parade

I went to a house in Los Angeles.

I want to live there in Los Angeles.

I went to my favorite restaurant called Joes cafe

I had amazing Mac & Cheese.

I had Steak at the Smoke House with Daddy's friends

I had  amazing ice cream at ice cream stare

I had very so good Sushi

I really want to move there in Los Angeles

I really I like it there in Los Angeles

I will study hard for USC School in Los Angeles

I will work at Los Angeles fire Department Engine 27

I had a cheeseburger at in and out burger

I walked around Hollywood.

Los Angeles is very so good and I like it there

I Love Los Angeles

I m going to home in Los Angeles on Febuary 14th 2020.

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