Thursday, October 19, 2017

Conversations with a teenager

[Me, pointing to a shirt on Max's dresser]: "Max, do you like the shirt that I got you?"
Max: "I saw it yesterday."
Me: "Yes, but do you like it?"
Max: "I saw it yesterday."
Me: "OK, but do you like it?"
Max: "NO!"

Max [pointing to Ben's food after finishing his dinner]: "I'm hungry!"
Me: "OK, so you want what Ben's eating?
Max: "Yes!"

Occupational therapist: "Max, you have to listen to me because I'm the boss."
Max: "I'm the boss!"
OT [laughing]: "Hey, I'm the boss!"
Max [laughing]: "I'm. The. Boss!"

Me: "Your iPad is almost out of power."
Max: "I know!"

Me: "You have to wash your hands."
Max: "I know!"

Me: "We have a doctor appointment in the morning."
Max: "I know!"

Me: "Max, do you want hair gel?"
Max: "Yes! Las Vegas, too!" [As in, he will require copious amounts of hair gel for his upcoming trip in December to Las Vegas.]

Max: "I'm hungry!"
Me: "So you want more dinner?"
Max: "Milkshake!"
Me: "Um, that's not dinner food."
Max: "Yes it is! It's very good!"

Max: "Daddy and I are going out Friday night!"
Me: "Can I come?"
Max: "No!"
Me: "Aw, come on!"
Max: "No thank you!"

Me: "Max, stand still, I just want to get rid of that pimple on your chin!"

Me: "Max, you have to do your homework."
Max: "I'm tired."
Me: "I get it, but you still have to do your homework."
Max: "I'm going to sleep!"
Me: "But Max, you have to do your homework."
Max: "Tomorrow! Bye!"

Me: "Max, have you seen my phone?"
Max: "Yes!" [Trots over to the other side of the room and grabs it.]
Me: "Doh! Max, I am always losing my phone and you're always finding it!"
Max: "I know!"

Max: "What are we doing Saturday?"
Me: "I'm not sure yet."
Max: "What are we doing Sunday?"
Me: "I'm not sure yet."
Max: "What are we doing Saturday?"
[Repeat, repeat, repeat]

Max: "Hey! You wore that shirt yesterday!"
Me: "Yep. I was tired this morning and just put it on."
Max: "Need new shirt!"

Max: "I'm hungry!"
Me: "Would you like some strawberries?"
Max: "Ice-cream!"

Wednesday, October 18, 2017

This week, I tried to see his future

The question has always been there, hanging over our lives. As Max gets older, it looms larger: Where will he live when he's an adult? Will he go to a group home or some sort of residential facility? What kind of options might exist down the road that aren't available now? Who will look after him the way Dave and I do? Or will Max always be at home with us? A few days ago, I thought I glimpsed a potential answer...but it really wasn't.

Sabrina signed up to volunteer at a local temple for a Saturday morning service for adults and young adults with disabilities. Max had speech therapy, but might attend at some point. Sabrina and I headed over, found the classroom and chatted with the woman leading the service as attendees arrived, middle-aged adults with Down syndrome and intellectual disability accompanied by aides. A lot of them lived in group homes, I found out, run by an organization in our state. 

A young woman walked in wearing a t-shirt emblazoned with "Love Love Love" in sparkly letters. The leader told me that she resembled another young woman who was her best friend and soon enough, that woman arrived and they hugged. They did look alike, and she was wearing the same shirt in a different color. At first, I wasn't sure if they were attendees or volunteers. Later, I found out they lived in a group home together. They appeared to be in their twenties and of all the adults there, they were most comparable to Max in terms of communication and social engagement. I was intrigued. 

Sabrina paired up with a woman who needed help turning the pages of the service book. Minutes later, I left and went outside to the car; I wanted Sabrina to be independent. I sat there and googled the name of the organization, and discovered that they ran 11 group homes, a supervised apartment and supported living arrangements in our area. I was floored. All this time, I never knew.

Turned out there is a group home in our town, an even bigger whoa. It took some digging but I found the address. It's located in a part of town that's fine but not especially nice, and per the Google maps appeared to be across from a park where Sabrina has played lacrosse.  I stared and stared at the photo, as if looking could tell me something. The home appeared to be well kept. But what lay inside?

The window to the classroom was open and I heard the prayers and songs drifting out, enveloping me in hope. I returned before the hour was done and stood in the back. 

One of the "love" t-shirt women was pouring cups of juice for the group. Two attendees, a man and a woman, sat in front of me next to an aide. I watched as a volunteer walked over to the woman, leaned down, grasped her shoulders, looked her in the eyes and said, "We've known each other for a long time. You know I love you, right?" The woman beamed at her. 

My eyes filled with tears and I turned my head to the side. I was overcome with emotion. I wondered if the older adults had family who visited them. I pictured Max as an adult in that room, accompanied by an aide, alone without me. It was too much to ponder. 

I wiped my eyes and turned back to watch the end of the service. The final song was about what God had created each day of the week. A man jumped up to sing it and once again, the voices in the room rose in song, especially ebullient at the end of each refrain: "And it was good."  

Most of the group headed to have lunch afterward. We couldn't stick around but going forward, Sabrina will be there for that and the afternoon program. Maybe Max, too.

On the ride home, I felt compelled to drive by the group home. But we were having a photographer come over for a family photo shoot and Sabrina needed a couple of hours to do her hair and get dressed, because: tween. 

I got there early the other morning. Sure enough, it was right across from the park I knew. I drove into the lot directly across the street, got out of my car, stood there and stared. Nobody was around. It was a gray day. The home's curtains were closed; all I could glimpse was a lit light fixture. The house was pleasant enough. Caught up in my anxiety about Max's future, though, it looked depressing. I thought of those aides in the classroom. Some had seemed warm and nice. Some had appeared to be a bit brusque, treating their clients like errant children, which perturbed me. 

Who would be there to help Max with food prep? To help him take a shower? To talk with him about his interests and engage him? To encourage independence? What friends would he have in a home? Would his therapists go there? What activities would they do? Would he miss us?

I felt increasingly anxious as I stood there. Finally, I got back into the car and drove off to do errands.



I've tried looking up the other homes. My search skills are pretty good, but I managed to Google only one nondescript ranch. I'm guessing the fact that they're not easily found is purposeful, to protect residents' privacy but also potentially shield them from small-minded locals who might not appreciate having such a home in their neighborhood. I could probably find more of the houses by asking around, but I think that would be headed down an (even more) stalker-ish, obsessive road that will do me no good.

Finding residential placement isn't easy in our state. I've heard of parents pooling resources, including funding from their states; purchasing homes for their adult children; and staffing them with aides. Or perhaps Max will choose to live at home, and Dave and I will spend our retirement visiting fire stations around the world with him. (Yes, I've mulled over that, too.) In my fantasies, Max is living on his own or with a friend, but I am dubious mainly because of the life-skills help he needs. 

What I do know is that Dave and I will be there, when the time comes, to research the heck out of all possibilities—residences, along with supportive organizations and parents who've been there, done that. We have pushed and fought and paved the way for Max for these past 15 years, and will do the same for housing when the times comes, guided by both his needs and wishes. Hopefully, he will advocate for himself as well. 

What I also know—the common sense that forces that anxiety monster to stop rearing its head—is that Max will be OK. It's impossible to even guess what his capabilities will be as an adult but no matter what, he will still be that charming, cheerful, good-natured yet determined person. He will find his place in the world because he always has. 

To paraphrase that line from the prayer-service song: "And it will be good."

Tuesday, October 17, 2017

Now I realize what's missing from my life, and it is: parties

Sunday, we had friends over to celebrate Ben's second birthday. Among the afternoon's highlights: Sabrina and other kids taught Ben the "bom bom bom" refrain of "Sweet Caroline," Max ate about one quarter of the cake (no joke), Ben tried our mini trampoline and gave out lots of kisses, and Max and his grandpa brought over a platter of sandwiches to our fire department. That night, as I finished cleaning up, I was on a bliss high. I really enjoy throwing parties, but I hardly do.

Party boy
When we first moved to our house fourteen years ago, when I was pregnant with Max, we were part of a local newcomers' club and one Saturday night we had dozens of people over for a super-fun potluck party. Then we had Max and for the longest time, Dave and I didn't feel much like socializing. As the years passed, we threw regular birthday parties for the kids. On occasion, we'd have families over for holiday celebrations. I hosted end-of-school parties and Girl Scout gatherings. Dave threw a surprise party for one of my birthdays, I threw one for him.

On weekends, we have fun, for sure. Once in a while, we have friends over for barbecues. But we also get caught up in a whirlwind of chores, activities and events for the kids, Max's longtime Saturday morning speech therapy, and oh yes, that most sacred of all things, Ben's naptime. Dave and I get out alone, but we are not so great at making plans with friends because sometimes, anything that takes even just a little extra legwork falls to the wayside.

Last year, we celebrated Max's bar mitzvah, which was one outstanding party. I'm planning Sabrina's for March. I love, love, love these events—how often do you have a whole lot of people you adore all gathered for a happy occasion? Not often enough, I thought as I put away dishes the other night. Usually, it's for those rare life milestones. Lately, though, with so much grim and unsettling news, I feel like we should be living it up a lot more often. There's nothing like a party with friends for having pure fun, and reminding you of how fortunate you are. Also: wine.

So I'm putting a few more things on my to-do list, and they are throw more dinner parties and also get a big crowd of people over for some random let's-celebrate-life blowout bash. I'm not sure when, but it's happening.

Who's in?

Monday, October 16, 2017

An award-winning show about cerebral palsy that's funny (yes, funny)

I've known about Thomas Ellenson ever since I opened the New York Times Magazine's September 12, 2004 issue and read the The Lessons of Classroom 506 about him, his father, Richard, and the inclusionary classroom Richard had made possible. Like Max, Thomas has cerebral palsy. It gave me so much hope for Max that I saved that magazine, and still have it. I connected with the family when I wrote a piece about them for Child magazine—Richard went on to create a breakthrough augmentative communication device—and we've stayed friends (he's now running the Cerebral Palsy Foundation).

Thomas Ellenson's resume is also pretty impressive. He's appeared in several Off-Off Broadway productions, a network TV episode and numerous news segments. And now, he's written a one-man show, It Is What It Is, that he also performs; it won the ONE Festival last spring. I'm seeing it this Thursday, debut night in New York City (tickets are available here), and it promises to be great. Thomas, 20, has an excellent sense of humor. When I asked him to describe himself, he responded, "People say I’m a very talented actor, but a complete geek." Below, his a's to my q's.

Did anything in particular motivate you to write It Is What It Is? 

Yes. When I saw 700 Sundays by Billy Crystal, I thought, wow, it is so brilliant and I love the way he tells people about himself in a way they can relate to. I can do this!

What's the significance of the title? 

Well, we are born with CP. we can’t change it. To tell you the truth, it’s not great. There are a lot of challenges. But we just have to deal with it.

What are some of your favorite parts of the show?

I especially love the end, because after I won the One Show Festival I worked with my friend, the actor and director Christopher Hanke, to rewrite it so it would be stronger and deeper. I wanted to challenge myself to bring even more to my story. Also I love the projections—photos and videos that accompany the show—because they bring so much energy to it, both amplifying my feelings and adding humor. They are designed by my friend, Zach Lobel, who is studying theater at Wesleyan. I also have a good time kind of making fun of some of my friends.

What do you most hope people will take away from the show? 

I hope that people can learn that we are more than our disability. It might be the first thing someone notices, but it is not the first thing that defines me.  I’m 20 and people still treat me all the time like a stupid guy. It’s infuriating. But when I’m on stage, people are looking at me for the right reasons. And they are going to hear about all the things that are important to me. I hope that people take away all the much more important things there are about people, all the other things that really define them.

One description of the show says it "shares the experiences of a young man who wants to let people know that disabilities can actually be interesting and funny." As the mother of a son with CP, I've seen that unfortunately a lot of people consider disabilities sad, not bemusing. They just don't get it. 

We need to make fun of things. Let’s face it: Disability is hard. And I realize that part of it is sad. But if that’s what you focus on, you’re not going to have a great life. And if that’s what other people focus on, you’re not going to have great relationships. For example, my friend, Zach Anner is a very funny guy. He always makes fun of himself on his YouTube channel. We both know that laughing is the key to life.

In my show, I cover a lot of things with humor. The way people look at me. Talking with a speech device. The way people are uncomfortable. I mean, so many people stop me on the street and pray for me. If that worked, how come I still have CP?!?! Instead, why don’t they stop me and ask what type of movie I like – and if we like the same one, maybe we can go together.

Have you had an interaction with someone where you helped change their perception of cerebral palsy? 

My best friends. I met them at my theater group five years ago. They were so scared of me. They didn’t know anything about CP or any disabilities. And then we started working on a scene together. And they quickly got to know me. Now we get drunk and hang out. It’s like with anyone – when you share interests and take time, you build relationships. People with disabilities just so rarely get a chance to do that. Like in school, they are so worried that I get the time to finish tests in things like algebra, that I’ll probably never need again. But no one has ever worried that I have the time to hang with friends.

What key advice do you have for parents raising children with CP? 

Just let them have a normal life. Ask your kids what makes them happy—and then find ways to make sure they can try to get it.

Which actor would play you in the movie version of It Is What It Is?

I don’t want it to be a movie because I think that Hollywood is overrated. These days, if they made a movie about me, they’d have to turn me into a super hero. I’d just rather this stays a play. And, um, no one is playing me, but me!

Thomas will be performing It Is What It Is starting Thursday, October 19 at New York City's Flamboyan Theater, through October 22. On October 23, there is a gala performance to benefit CAT Youth Theater, a free, award-winning, after-school program that helps young people thrive on stage and in life; it's where Thomas got his first training in the theater. Tickets are available here for October 19 - October 22, and here for the Oct 23 benefit performance.

Friday, October 13, 2017

The Disability Blogger Weekend Link-up: Start your engines!

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: Why it's good not to help our children too much

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, October 12, 2017

This is two

Two is attempting to climb on top of/into/onto whatever you can: our dining room chairs, the kitchen table, the sofa, the hallway bench, the piano bench, our stairs, the drawers in the kitchen.

Two is your favorite word being "No!" and your second favorite words being "No way!"

Two is doing laps around the first floor before bedtime, when you are wired.

Two is the adorable way you flap your arms when you run.

Two is being fascinated by buckles of all kinds, bubbles, shadows, childproof locks, doors, cabinets and above all, our powder room toilet.

Two is chucking everything you can get your hands on into the toilet (toy cars, papers, blocks, food and once, your sister's phone).

Two is chucking things into our fireplace and your playpen, too.

Two is refusing to lie down on the changing table.

Two is those curls that pop up on either side of your head.

Two is giving people that cautious look because you get shy.

Two is loving ketchup more than the food itself.

Two is waking up at 5:00 in the morning and then, as you lie in bed next to me, kicking, tossing and turning and trying to put your fingers up my nose, then grinning at me in the dark.

Two is going to sleep with your favorite toy and your bunny.

Two is  singing the tune to the alphabet song but just saying "E I E O I" from Old MacDonald.

Two is pushing my hand away when I try to help feed you because you want to do it yourself.

Two is still looking like a baby when you sleep.

Two is fretting in the car until I reach my hand behind from the passenger seat to hold yours.

Two is reading and rereading your favorite books at bedtime: Trains, Freight Train, Trucks, Ten Little Ladybugs, Goodnight Moon and that one about children around the world.

Two is testing limits: taking a nip or smacking one of us, then kissing us because you know you've done wrong.

Two is calling Grandpa Michael "Gurkle."

Two is sucking your thumb when you feel pensive, tired or upset.

Two is regularly eating your body weight in Pepperidge Farm Goldfish and Cheerios.

Two is attempting to see how many Goldfish and Cheerios you can stick into the slots in your sandals.

Two is being obsessed with choo-choos, trucks and busses.

Two is solemnly saying "Bye, Mommy!" when I leave for work in the morning.

Two is running into my arms when I walk in the door at night and saying "Hi, Mommy!"

Two is holding my cheeks with both your hands when you kiss me.

Two is adoring your big brother...

...and adoring your big sister, too.

Two is pointing out "eyes!" and "nose" and "boobies!" (Mine.)

Two is saying "Uh-oh!" when something falls and "Ewww, doodie!" when you poop.

Two is attempting to brush your teeth but mostly just sucking on the toothbrush. 

Two is shooting hoops in sports shorts that are too big for you.

Two is calling school "cool" and not crying anymore when you go, since you are very excited that they serve cookies there and have a sandbox and bubble machine.

Two is jumping up and down because you've realized you can.

Two is recognizing logos, like saying "Bottie!" (your word for a bottle of milk) when we pass by Starbucks and saying "Big truck!" when you spot the UPS logo.

Two is finding opening and closing the bread basket drawer endlessly fascinating.

Two is asking "What's that?" about everything.

Two is climbing up the slide.

Two is climbing on Daddy when he takes a nap.

Two is repeated trips to the zoo, your happy place.

Two is noticing the letter "b" in books, on boxes and in signs.

Two is announcing "dark!" when night falls.

Two is wanting to eat what's on everyone else's plate.

Two is your little belly that sticks out.

Two is adorable, delicious, sweet, naughty, exciting, fascinating, fun, nonstop.

Two is you today. Happy Birthday, little love.

Wednesday, October 11, 2017

Everything looks worse in black and white

His motor examination demonstrated diffuse weakness.

His fine-motor skills continue to be impaired.

He has cerebral palsy and tone abnormalities.

I read the the pediatric neurologist's letter about Max's annual visit as soon as it arrived in the mail, like I always do. Sometimes I think that I'd be better off just filing it away, sight unseen, because as is typically the case, I felt pangs of distress when I read parts of it.

This doctor—who's seen Max since he was two weeks old—tends to write a pretty comprehensive letter, which he addresses to our pediatrician and cc's us on. It covers Max's cognitive and physical state. Cerebral palsy isn't just a physical condition; the brain fires messages to muscles, directing them how to move.

I am well aware of every single physical thing he mentioned in his letter. Max has cerebral palsy; weakness, fine-motor challenges and tone abnormalities are no shocker. Max does his best to work around them. He gets a good amount of therapy to help him learn adaptive maneuvers. We use enabling gadgets.

I don't think about the CP much on a daily basis. When he was little, I had a hard time accepting what had happened to him, but Max's evolution and the passage of time helped the grief ebb away. Still, when his challenges are there in front of me, in black and white, I consider what Max has to contend with. The same goes for educational assessments and reports.

These write-ups are not a reflection of who Max is, I realize. But there I was, standing by the pile of mail on our kitchen counter, staring at the words and wishing that movement came easier to him. Which is futile, of course. The cerebral palsy isn't going to change—it's a static condition. At times, Max's muscles may be more relaxed than others but the fact is, he will always have four-quad spastic CP.

The CP is part of who he is.

Whatever pangs I may occasionally have, I want him to embrace the CP.

No, I want him to own the CP.

Max doesn't complain about stuff being harder for him, because he doesn't know any differently. For sure, there are times when he gets annoyed—say, when something falls out of his hands that he was trying to grasp—but otherwise, he takes life in stride. This is who he is.

As parents, we feel our children's every difficulty, big and small. When one of the kids has strep throat, when Sabrina is upset about how a frenemy has treated her, when Ben falls and bumps his head, when Max gets anxious if we're in a loud and crowded place, when anyone is overly tired or bummed out or freaked out or whatever-ed out, I feel them. And so, when I consider Max's physical challenges, I feel them. 

But then I force myself to think back to the advice this very doctor once gave Dave and me about the MRI scans of Max's brain, taken at the hospital a few days after he was born. The white areas on the black film show the damage, the result of the stroke. The doctor told us to store those scans out of reach, to not take Max's medical history to heart and to look at the child in front of our eyes.

I walked upstairs and filed that letter away.

Yesterday evening, I took Max to an event at his school, which is for students with disabilities; teens from a local high school came to hang out, play sports and do crafts together. "It's going to be the best night!" Max told me during the car ride there. He dashed into the gym with a big grin and ran over to friends to say hello. I paused to watch him before I left, but then he spotted me and motioned me to leave. Spy Mom, caught in the act once again.

As I drove off I noticed floodlights on the field across the way; football players were practicing. Years ago, I might have been bummed that Max would never be one of them. But last night, I only felt happy for him.

Tuesday, October 10, 2017

Crowdsourcing: How do you deal when your child digs in his heels?

"I'm staying!" Max announced, matter-of-factly.

Huh, what?

We had just escorted Ben to his Toddler Time class. Max had the day off for Columbus Day, and he'd been really excited to take Ben to school. Evidently, though, he'd hatched some plan about joining him.

"Max, you can't stay with Ben, this is a class for little kids," I explained.

Logic never works at times like these.

"I'm staying!" Max repeated, more loudly this time.

The teacher looked at us.

"He can stay for a few minutes," she offered.

Tots were just beginning to trickle in. The class has only recently gotten to a point where none of the kids were crying for their parents, and I didn't want Max to disrupt the calm. Because when one kid starts to wail, they all start to wail.

"No, that's OK, we're going," I said, and grabbed Max's arm.

He's almost as big as I am (that is not hard, as I am just shy of 5'2"), and moving him around isn't so easily.

"Max, let's go," I said. "You can't stay. This is Ben's class."

"NO!" he said, this time really loudly. "I'm staying!"

A couple of the kids were staring. Ben was playing with the play kitchen.

"We're going—now," I said.

"I'M STAYING!" he yelled.

And then I literally dragged him out of the class.

"Bye, Mommy!" said Ben.

Max too old for me to be forcibly removing him from a room, but I did not want to risk a meltdown in Toddler Time. We discussed it in the car ride home.

"Max, you know your behavior wasn't OK before," I said. "You couldn't stay in the class. It's just for little kids, not big brothers and sisters."

"ARGH!" he said.

I asked for an apology for the yelling.

"Sorrrrrrrrrrrrrrrrry," said Max, drawing out the word.

Obnoxious teen? Check!

He looked at me with a wicked grin and cracked up.

I couldn't help it: I had to laugh, too. I knew he knew he was acting out.

"Max, are you really sorry?" I asked.

"Yes," he said. And then: "Sorrrrrrrrrrrrrrrrry." And he cracked up again.

I still have (obviously) not found a solution for defusing situations like this. When Max gets something in his head, it is difficult to redirect him. It goes beyond stubbornness—it's part of how his brain works. He hatches plans, then assumes that things will go the way he's conjured them up. Threatening to take something away from him or giving him other consequences never does the trick.

At home, distraction tends to work. Yesterday afternoon, when he refused to take his eyes off his iPad for the start of music therapy, I asked if he wanted to create a birthday song for Ben, and he perked up. But when we're out, it's harder to deal when he digs his heels in.

Open to suggestion here, people!

Monday, October 9, 2017

Why it's good not to help our children too much

Early yesterday morning, Max was swiping his finger on his iPad, maneuvering his way around the Neflix menu. We usually go through Apple TV but the remote was missing. (perhaps you've seen it?) and Max knew how to access it through his iPad. It was 6:30 a.m. and Ben had asked to watch Thomas the Tank, one of the most boring TV shows in the history of TV shows.

I thought I saw it scroll by on the screen.

"Wait, Max!" I said. And then I leaned over and swiped, only I messed up and took us to the wrong program.

"Nooooooo!" said Max.

Instantly, I realized I should have asked him if he needed my assistance. I likely would have reached over and done the same if it was Sabrina, but ever since I read something a couple of months ago about not over-helping people with disabilities I've been more aware of not doing that to Max. Titled "Hell-Bent on Helping," the chapter is in Creativity and Collaborative Learning, a book for education professionals. It was published in 1994, yet I felt as if it could have been written today:

One of the biggest challenges teachers face in inclusive classrooms is getting other kids to stop doing everything for the child with disability. Too much help, even when enthusiastically given, is fundamentally disempowering....  

Been there, done that to Max. I have no excuse except that as his parent, I am used to lending him a hand. Max required a lot of help when he was little and I got used to helping him—too used to it. And then, of course, Max got accustomed to Dave and me doing things for him. Many parents of children with disabilities are aware of the school ability phenomenon: when your children do things independently in class that they refuse to do at home, because they are used to being enabled by you. You know, like self-feeding or cleaning up after themselves.

Adults with disabilities are all too familiar with the issue. In her blog post How Did You Get Here?" Or, Why I Wish People Would Stop Questioning My Independence, writer/activist Emily Ladau notes that people regularly rush over to help her get in and out of her van in parking lots, "never once considering the very obvious fact that I clearly got there in my own vehicle and drove there on my own."

An online friend who uses a wheelchair, Lauren, told me a story from her adolescence that's stuck with her. "I made a friend when I was about 15 who while otherwise lovely, did something when she invited me over for dinner that made me cringe," she recalls. "When I asked her to cut up my food for me she said, 'Oh, sure, it'll be good practice for when I have kids!' The takeaway from that I would offer is to always remember that impairments do not make people into infants or children, so please don't refer to us that way. Referring to us like that disables us. Our impairments, whether CP or other, are irrelevant."

This is important for parents of children with disabilities to keep in mind, as automatic and tempting as it may be to help them. I could have waited till Max asked me if he needed a hand with his iPad yesterday morning, or at the very least first asked if he needed assistance before jumping in to do so. This is also key for non-disabled people to consider regarding adults with disabilities. As the authors of the above chapter note, "We must listen to both the verbal and nonverbal messages expressed by someone who may or may not want help. We must use this information to guide our actions and increase our sensitivity. It is often during times that we are hell-bent on helping that we listen least well. We all know stories about people with visual impairments being forcibly 'escorted' over crosswalks by well-meaning pedestrians, what the participants of one study aptly called 'unexpected attacks' of help."

In the afternoon, Max and I put out boxes for recycling. He struggled to hold onto one particularly cumbersome one then dropped it. "Awwwwww!" he said. I said and did nothing. He picked it up again, held onto it for dear life and got it to the curb. Then he grinned at me proudly, one more benefit of letting our children DIY even if they struggle. Our children will never learn independence if we constantly do everything for them—or learn just how capable they can be.

I'll leave you with the memorable words at the end of the chapter:

Every individual is a complex collection of components. Each of us has a variety of interests, skills, capacities and a unique background. We all have different physical physical characteristics, and our own idiosyncratic personalities. 

In our interactions with others, we want most to be understood and seen for who we are, and hope that we will not be judged a face value. However, for individuals who have visible disabilities, being judged at face value is precisely what happens most.

When disability is seen as the largest component of a person, much of what is unique and "human" about him or her will be obscured. When needs and deficits are what we see, we only see what that person cannot do. 

We will not recognize the diverse contributions of those who wear obscuring labels until we move our focus from the disability and look for the complexity and individuality we take for granted in ourselves. Only getting to know a person in all their multifaceted individuality can cause the "huge" disability to magically shrink and assume its real portion—only one facet of who a person is. 

Friday, October 6, 2017

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: Will he be the driven one, or the driver?

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, October 5, 2017

Will he be the driven one, or the driver?

Dave got a loaner pickup truck the other day while Toyota serviced our minivan, and Max was gleeful about taking a ride. He loves cars of all kinds, which sometimes has me wondering about whether he will be able to drive when he grows up.

I don't often ponder Max's adult life. There are the big questions about independent living and work that I know better to worry about, because I realize that he and his life will play out as they will, with Dave and me doing whatever is within our powers to help and Max making his own choices. But the driving is something that I frequently ponder, a skill that encapsulates a lot about Max's future.

Max goes back and forth on this. Sometimes, he says that no, he doesn't plan on driving. Some days he tells me that yes, he would like to. I've shown him videos of adults with cerebral palsy driving. Who knows what adaptations may emerge down the road. But even if it is physically feasible for him to drive, will it be within his cognitive realm?

Ah, that perilous habit of peering into the crystal ball of your child's future. Really, it does nobody any good. But I can't help it.

Of course, there is such a thing as Uber, or whatever variations of that will be around in years to come. Max will be eligible for free public transportation for people with disabilities. Also, self-driving cars might be a reality by the time he is in his twenties.

Plenty of people never learn to drive, like my mom. She's gotten along just fine in life, I tell myself. But then, my mom chose not to drive. Max may want to.

I grew up learning how to drive in New York City, and I'm pretty intrepid about it. I still enjoy the freedom it gives me, after all these years. I enjoy the possibilities that open up when you get behind the wheel (carpool excluded). I would like for Max to enjoy the same, but if he can't, there will be other experiences to take their place.

Rationally, I know all this.

But then, when we talk about Max driving, I wonder and wonder. There is no logic when it comes to pondering what the future holds for your child.

"Next car!" Max said, pointing to the pickup after we were back home. As in, next time we're in the market for a car, he'd like us to buy a pickup truck. (Along with a fire engine, ideally.)

I smiled at him.

"Would you like to drive a truck?" I asked.

Max pondered that.

"I don't know," he said.

Yes, that.

Wednesday, October 4, 2017

5 great games for children of all abilities that also teach skills

This guest post is from Annie Klark and Katie Mann, co-founders of 4th Wall Theatre Company, a mobile operation based in the Detroit metro area for people of all abilities. In the last five years the pair and their team have taught singing, dancing and acting through camp, library, church, school and arts center programs. "In actuality, it's more about making connections, learning life skills, and becoming good friends," says Katie, a certified teacher with a masters in special education (she's the cowgirl in the photo below; Annie's the flower). Their 19 instructors have a wide range of expertise, including theatre performance, occupational therapy and American Sign Language. Here, Katie and Annie share some of the most popular activities from their program to try at home.

All the time, we hear from naysayers: “My child wouldn’t be good at performing or dancing, his attention span is too short.” Even worse: “My child is nonverbal so they wouldn’t be able to act.” Be still our hearts! And forgive our bluntness, but these assumptions are wrong, wrong, and wrong: Theatre is for everyone.

Not only can everyone participate, we have seen the benefit of singing, dancing and acting for thousands of people with disabilities ages 2 to 72. Singing is actually a fun disguise for articulation. Dancing teaches self-expression and grows confidence. And acting? It is the royalty of social skills! What is a play, if not practicing the social convention of conversation: approach someone, stop at this distance, look them in the eye, say something, wait as they say something back. Repeat.

In our theatre classes we've had our students tell us, “On the first day of class I had no friends, now I have forty!” Our personal favorite: “Everyone looked at me because I was good, not because I was different.”

Whether your child is verbal or nonverbal, shy or a ham, we can assure you that theatre has enormous benefits for them. Not only that, it is downright fun. Here are some ideas for easy games that you can play with your child, or with a group, to add excitement to the learning process.

The Freeze

We’re sure almost everyone has heard of the freeze dance! But to make it inclusive for everyone, and a lot more fun, we’ve added our own style to it.

What you need: Some rockin’ jams.
What to do: When the music starts, dance; when it stops, freeze. Our twist comes when people are frozen—we say, “When the music starts, pretend you are a cowboy!” The sillier the suggestion, the better. “Pretend you’re a...."

● Giraffe
● Crocodile
● Hippopotamus with an upset stomach
● Cat who’s had the best cat day of their life
● Prince/princess
● Superhero
● Robot
● On a floor that's really hot, sticky, or squishy
● In a room full of full of noodles, clouds, or water
● Person who moves in slow motion
● Baby
● Caterpillar—then go in your cocoon, wait, wiggle, and emerge as a beautiful butterfly!

Once your actor has the idea, have them come up with their own.

Pass the Hat

This is a 4th Wall Theatre classic! It always brings giggles and surprising moments of bravery. Try it when your child has friends over. Or use it as a prompt to talk to one another in silly voices.

What you need: 4 to 6 six different hats (such as a baseball cap, winter knit, witch's hat, etc.)
What to do: Sitting in a circle, the leader begins by putting on a hat (say, baseball cap), makes a motion (say, swinging a bat) then says a line (“It’s a home run!”).  If the child wants to/can do both the verbal and nonverbal action, great.  If not, great again! Have them gesture at their comfort level. The hat is then passed around the circle and everyone gets to decide what their version of the character would say, and/or what the action would be. They may repeat what the leader said, or come up with a line/motion of their own.  Repeat with as many hats as you’d like.  If only two people are playing the game, it can turn into a skit where they speak to each other as their characters. What a great way to explore responding to emotions!


In this came, kids copy the movements of a leader or a partner. It gives children the opportunity to explore their space and bodies, and learn about rhythm. They also practice following directions and taking turns.’s fun!

What you need: Nothing—just two people! You can play with your child, or pair up children to play together.
What to do: The two partners should face each other. Assign one as the leader and one as the mirror. During a 30-second timeframe, the mirror must copy (or “mirror”) every movement the leader makes. If the leader raises their right hand, the mirror will raise their left. If the leader stands on their left foot, the mirror will stand on their right.  The movements can get as funny or silly as you’d like! When the 30-second time limit is up, switch roles!  Here are some ideas:

● Touch your nose
● Shake your head
● Wiggle your right arm
● Wiggle your right arm while touching your nose with the other
● Raise both hands up really high then see how small of a ball you can make your body

Rhythm Sticks

Surprisingly simple in nature, this activity has large benefits, including improving focus and attention span and learning to follow a pattern.

What you need: Two rhythm sticks or two wooden spoons. You could also use a percussion instrument, like cymbals or even pots and pans. You can even make the rhythms using only your hands or bodies. Be creative!
What to do: Sitting on the floor, have your child follow you, simultaneously repeating patterns and movements. As time goes on, the patterns can become lengthy and more complex. All students follow the leader and simultaneously repeat patterns and movements. Here are some favorite examples just with clapping.
● Hit the floor with both hands (call it "FLOOR"). Then clap your hands in front of you ("CLAP").
● Rub your hands back and forth to make that small swoosh sound (SWOOSH), count to four and then hold hands up in the air (AIR) for four.
○ Now do SWOOSH… 2… 3… 4… AIR… 2… 3… 4… SWOOSH… 2… 3… 4… AIR… 2… 3… 4… Repeat.
● Add a high clap!  One that’s over your head (HIGH- CLAP).  It’s harder to do but fun!
● This pattern gets tricker and shorter as it goes:
○ FLOORx8, CLAPx8, FLOORx4, CLAPx4, FLOORx2, CLAPx2, FLOORx2, CLAPx2, FLOOR, CLAP, FLOOR, CLAP, FLOOR, CLAP, FLOOR, CLAP. HUH! (We like to yell on the last one.)

As time goes on, try doing the same patterns louder and louder or softer or softer.  Then try to go as slow as you can or as fast, while still keeping the beat.

Cake Walk

Inspired by musical cake walks at fairs and events, our activity allows a sense of freedom and a chance at exploration. Your child will also practice essential skills like listening, movement, reading, and exploring the space.

What you need: Pre-made notecards with various types of movements written on them. You can also draw characters that children can write out. You'll also need some fun tunes!
What to do: Play the music. Have your child(ren) walk or wheel around a circle of cards and when the music stops, the card that they land on is the one they have to act out.  Everyone participates in every turn, and there is an element of surprise as to which card the students will get. It’s fun to play with a group, and to see which cards everyone gets! Ideas for cards include:

● Meow like a cat
● Do 3 jumping jacks or 3 arms criss=crossed
● Walk like a dog
● Neigh like a horse

If you would like a quicker version of the game, put objects on the floor in the circle.  When you stop at one you have to say something a person might say with that object:

● Ladle (“Would you like some soup?”)
● Soccer ball (“Let’s play!”)
● Stuffed animal (“Do you want a hug?”)

For more inspiration for theatrical games, check out our ebooks at 4th Wall Backstage.  

Tuesday, October 3, 2017

Not just any toddler jacket

I can vividly picture the day, 14 years ago this month. Dave and I took Max to the Metropolitan Museum of Art. First, we cruised around Central Park. Max's stroller was tricked out with toys to entice him to use his hands. Sometimes, he'd swat at them but grasping wasn't yet in his repertoire of movements. Every once in a while, as we walked, I'd lean over and try to get him to hold a toy. It made me so anxious that he couldn't.

Then we roamed around the museum, pointing out colors and shapes to Max and trying to be like any first-time parents on an outing with their baby. We desperately wanted some sense of normalcy in the otherwise tumultuous year we'd had.

Back then, I took a lot of comfort in Max's cuteness. I'd dress him in adorable outfits and do photo shoots. This tan corduroy jacket was one of my faves, Baby Gap toddler size 12 to 18 months, lined with red fleece on the inside. Max looked like such a little man in it.

Decking Max out was another touchstone of normalcy. Maybe he wasn't babbling or crawling, but damned if he wasn't going to be as well dressed as any baby. The competition, of course, was all in my head, this desire to somehow keep up with the other tots even if he was lagging behind. It would be a while before I came to accept that Max would develop on his own timeline.

Long after Max outgrew the jacket, it stayed in our hall closet. Through the years, I'd do outerwear purges but I never could bear to get rid of that jacket. It wasn't just because I thought we might someday have a third child; mainly, it was a reminder of how far both Max and I had come. He was no longer that little boy missing all the milestones. I was no longer that mom grieving it.

And so, the jacket was there for the wearing when Ben needed something cozy last weekend. Gleefully, I put it on him, and it did not disappoint. Like the Invisibility Cloak in Harry Potter, it is a garment with special powers: it brings out the cute.

I flashed back to that uncertain time in my life. I felt compelled to dig up photos of Max in that jacket. Yet when I looked at Ben, all I saw was another adorable little man rocking corduroy. The jacket had moved along to its next existence, and so had I.

Monday, October 2, 2017

Maybe he doesn't need that homework...but maybe he does

Like many people, Max learns best with repetition. And so, over the years, I've been known to request extra homework . When I realized he wasn't getting any for social studies or science at school, I asked about it. Students don't get work at home for those topics, I was told, because they already get math and english work. I could, however, get copies of the chapters for review.

I didn't know what to think, but it bothered me. Ditto for the fact that Max's IEP has never contained goals for social studies and science—basically, reading skills and comprehension are the consummate goals. Same goes for the fact that he never has tests. He's had to take standardized ones, of course, but class quizzes and finals: no.

At the root of my concerns is the question of Max not being held up to certain standards. He may learn in a different way than neurotypical students do, and at at different pace, but why shouldn't he be tested on his knowledge? Why shouldn't he get some homework in social studies and science? That knowledge helps shapes our perspectives and understanding of the world. When I was looking at high schools for Max last fall, I was turned off by one's no-homework policy.

Max is one of those students who actually likes doing homework, especially since he enjoys being right. "It's easy!" he often proclaims. If we're getting to it at 7:00 at night, after I'm home from work, and he's tired he can be a bit whiny. Usually it's not much, though, just a couple of worksheets typically related to life skills, like reading a menu. I take a photo of them from his iPad using the SnapType app, which enables Max to type answers on them.

But then, there's the other Big Question I wrestle with: How much academics is truly important for him? Max's school places a big emphasis on life skills, which is key to his future. Obviously, there's overlap with that and science, like learning about how the body works. But when you have a child who needs to learn how to do everything from pulling up pants to washing dishes, then learning the elemental table doesn't seem imperative. Then there's the fact that learning the elemental table is beyond his comprehension right now.

There has to be a happy medium.

I had all this on the brain when we went for Max's annual neurologist appointment on Friday. After Max filled him in on his Las Vegas trip, we talked about Max's progress. It was good to hear the doctor say he thought Max was getting easier to understand when he spoke. I brought up my concerns about the homework. We talked about schools' expectations of students with intellectual disability.

The doctor reminded me how educational experiences can be. Sure, Max could get homework about Colonial America—but it would be even more helpful to the way he learns to visit a local colonial fair or, someday, Williamsburg, VA. Sure, he could study the galaxy, or we could go to a planetarium. It would all tap into Max's love for travel and trying new activities.

I left there feeling a bit more reassured. But I'm still going to explore homework options for Max with his school; one possibility is doing more on IXL, a schoolwork practice site he enjoys.

Once again, I hope I'm doing right by him.

As parents of children with disabilities, we 're often aware that we need to let go of preconceived ideas of how classwork, homework and learning should happen. We're aware that our children need to learn many things that other children don't need to be taught. But we're also acutely aware that we don't want to underestimate our children—and that it's up to us to make sure people in their lives max out their potential.

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