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 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. Plus...it’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.

Friday, September 29, 2017

The Disability Blogger Weekend Link-up: Nice to see you again

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: 5 ways to get an appointment with a doctor who has no openings

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, September 28, 2017

5 ways to get appointment with a doctor who has no openings: Ability Hacks

Juggling our children's various medical appointments can be a full-time job, but it's not exactly something you can pay someone on TaskRabbit to do. So then, there's us parents...and hacks that help you get in to see a doctor who's booked up for months. These are a few tactics that have worked for me. Remember, there's no such thing as being too pushy when it comes to getting our children the care they need. You're not doing this for your health, after all—only theirs. 

1. If at first you don't succeed, try, try, try, try, try, try, try, try, try, try, try, try again. 
When I'm told that there are no immediate appointments to see a doctor, I have been known to check in every single morning. Or I'll ask the staffer to call me about cancellations—I've literally said, "Can you put up a post-it note on your computer with my name and number so if there are any cancellations, you'll call?" Be polite, but be that parent who doesn't let up. 

2. Appeal to the social worker.
If you're dealing with a team at a hospital, reach out to the social worker. This worked for me years ago, when I was trying to get Max in to a renowned developmental pediatrician at a hospital. He had no openings for six months. I got in touch the social worker. I told her about Max's stroke at birth and how anxious I was about his future. And just like that, we were in. Sometimes, hearing the story behind the patient on paper opens doors. 

3. Befriend a nurse and/or office manager. 
This works well for any doctor you regularly visit, like the pediatrician, especially if it's a pretty busy practice and it's hard to get a well visit appointment at a desirable time. Chat with the office manager, get to know one nurse in particular. Make any special needs known; since Max is at high risk for seizures when he has a fever, I always try to get him in for a flu shot ASAP. Have your child say hello and interact with them. Give a gift during the holidays. When you can't get an appointment or urgently need a form filled out, bypass the person who makes appointments, reach out to the manager/nurse and beg shamelessly.

4. Have your people call their people.
And by that I mean, if your child's regular doctor knows the specialist, ask him or the office manager to personally put in a request for an appointment.

5. Last resort: email the doctor
Recently, I needed to get Max in to see an endocrinologist he's seen before, but all her after-school appointments were booked till January. I only pull Max out of school for doctor visits as a last resort. So I emailed the doc to ask what she could do, and she agreed to open up a spot 15 minutes before her appointments started one afternoon. I'm not saying every doctor will do this, but it is worth a shot. If this is the first time you're contacting a doctor, consider including a photo of your child in your email. Like I said: #shameless

Ability Hacks appears occasionally on the blog; the last one was about self-feeding tips for kids with disabilities. Got something you need help with? Email lovethatmax[at]gmail[dot]com.

Wednesday, September 27, 2017

Letting our children learn from their mistakes: not always easy, but worth it

This excerpt is from the new memoir Loving Lindsey: Raising a Daughter with Special Needs by Linda Atwell. For years I've read about Lindsey, now 37, on Linda's blogLindsey has a tremendous spirit, a strong well, and intellectual disability, and her mom writes lovingly about her while telling it like it is. The book is the same, a beautiful coming-of-age story. 

When Linda first mentioned the book to Lindsey, Linda recounts,"she asked me if I was going to tell the good, the bad and the ugly. I told her that, yes, I would do just that. She said, 'Well, I am pretty funny. As long as you tell the truth, it's OK by me!'" Linda did not disappoint.

"It’s a cashless system on the ship," I explained to my kids, during lunch on the Lido Deck. I showed them the cruise-ship charge cards they would use over the week. "Whenever you want something, like a soda or a souvenir, you give them this card." I handed one to Lindsey, and her eyes grew wide. "At the end of the week, we’ll get a bill."

"I get my very own charge card?" my thirteen-year-old asked, holding the rectangle tightly between two fingers.

"It’s like money," my husband said between bites of pepperoni pizza. "Don’t spend more than you can afford."

"And don’t spend it all at one time," I added. "Budget so your thirty dollars will last the entire week."

Lindsey opened a pocket on her Hello Kitty wallet and slipped the card inside. "Now I’m ready to explore. Do you think I’ll get lost?"

"Nah," her little brother said, acting as if he were captain of the SS Minnow. "You can’t get lost."

That wasn’t totally true. John and I had become disoriented on past cruises, believing we were aft when we were actually forward, but being confined to the boundaries of a floating resort helped. "Stick together," we told the kids.

"But she’ll cramp my style!" Michael waved his hands in the air, rejecting our suggestion. What style? He was only ten.

"Whatever, Michael," John said, wiping his mouth with a napkin. "You need to keep an eye on Lindsey." Michael shrugged and rolled his eyes.

"I don’t wanna do what Michael’s doing," said Lindsey, picking fry salt off her fingers. For all of her challenges, she possessed a keen sense of direction. "I don’t wanna be rushed. I wanna explore on my own."

"Okay, then," I said, though I worried this might not be such a good idea. "As soon as we finish eating, we’re going to the Sun Deck for the sail-away party. When you’re done, come find us. If you get lost, ask a crew member for help."

*      *      *

"To a week of fun in the sun!" I clinked my glass against John’s, then sipped my slushy margarita.

"I have some for Michael, too," Lindsey said, appearing out of nowhere and handing me a silver-and-gold key chain and a blue-and-gold pen, both imprinted with the Princess Cruise Line logo, as well as a bag of chocolate candies. "They were free." She distributed identical trinkets to John.

"Where did you get these, Linds?" I asked. I knew they weren’t free.

"In the gift shop. They wouldn’t take my money. The lady gave them to me." Her huge smile exposed the small gap between her two upper front teeth. I mentally calculated the value of the items and realized she had spent most of her thirty dollars in one shopping spree, and we’d just set sail. I turned the souvenirs over in my hand.

"Lindsey, don’t you remember? We talked about how the ship doesn’t take cash...." I started to say.

"Yes, but these were free."

"Did they ask for your card?"

"Yeah, but the lady said I don’t need to worry ’bout paying."

"That doesn’t mean they’re free," I noted. "She meant you didn’t need to pay right now."

I explained and reexplained the cashless system, like I’d explained and reexplained millions of other things her mind didn’t digest on the first or second or third attempt. It wasn’t her fault the short in her brain messed her up, but boy, it sure could be aggravating. For both of us. Lindsey crossed her arms and stared at me as if I were speaking French instead of English. "Is this really how you want to spend your money?"

"All the stuff was free." Lindsey’s arms and head tremored. She clenched her jaw. We were at an impasse. "Don’t you like your presents?" she asked, her voice tinged with hurt.

"It’s not that," I said, her sadness tugging on my heart. "You can keep all these treasures"—I paused—"if you want. But let’s go back to the room and add everything up." Lindsey scowled.

"Let Mom help you," John said.

She followed me down the steps, and through the long corridor to stateroom 2112. I pulled a calculator from my purse and added all the prices. "You spent twenty-six dollars and thirty-five cents. If you keep all this stuff, you’ll have less than four dollars for the rest of the week. Is that what you want?"

"It’s not free?"

"Did the salesperson take your card?" I asked again. Lindsey nodded, fury evident on her face. "If she scanned your card, you’ll pay when the bill comes."

"You don’t know what you’re talkin’ ’bout, Mom!" Lindsey’s hands flew around in the air. She was verging on a meltdown, and I didn’t want to start our vacation that way.

"Stop!" I held out my hand like a school crossing guard. Lindsey froze in place, like a child playing freeze tag. It was as if she had an invisible barrier around her. "Listen!" I wished I’d thought to use this counselor-suggested technique earlier. Before I’d finished the final command, my girl started counting. Loudly. Once she reached ten, I offered a new solution.

"Let’s go to the front desk and talk to the purser," I said, hoping she’d be more receptive if a neutral party confirmed the news. Lindsey shoved the gifts into a plastic bag and followed me out of the room, along the corridor, and up the stairs.

"Twenty-six dollars and thirty-five cents," Alex at the purser’s desk said. He handed my daughter a printout.

"I have to pay this?" Lindsey turned away from me and leaned closer to the purser.

"Yes, ma’am," he said. "At the end of the cruise."

"What do you want to do, Lindsey?" I asked. "Do you want to keep the items and give them away as gifts, or keep them for yourself?" I exhaled slowly. "Or do you want to return them?"

"Can I?" Lindsey asked, the anger snuffed from her voice.

"Let’s go see."

Lindsey retraced her steps and arrived at the gift shop doors without any detours. Guess she won’t have trouble finding her way around, I thought, seeing a young woman standing at the cash register, smiling.

"I tried to explain the process to your daughter," Greta said.

"I know." I nodded and inquired whether everything could be returned.

"Of course." Greta took Lindsey’s card and scanned a credit. Lindsey thanked her; I thanked her. Several times. We climbed the stairs toward the Sun Deck.

"It’s nice you wanted to bring us gifts." I wrapped one arm around my girl’s shoulders and squeezed. "You’re a very considerate young lady."

"I thought they were free."

"We all make mistakes. Now, let’s go have some fun."

Excerpted with permission from  Loving Lindsey: Raising a Daughter with Special Needs by Linda Atwell. Photos by Kristine Thomas. 

Tuesday, September 26, 2017

The obsessions don't go away—they just get more mature

For years, we have lived through Max's various phases and obsessions. Endured, some might say. Recently, they've taken a turn for the better. Less annoying, some might say.

The purple phase, which started seven years ago, was welcome at first—I was thrilled Max was expressing a definitive like. Purple! Everything needed to be purple! But then: EVERYTHING. NEEDED. TO. BE. PURPLE. The clothes he wore, the plates he ate off, his bed sheets, his band aids: purple, purple, purple. People started mailing Max purple presents and emailing photos of purple homes.

His fascination with car washes and spaghetti overlapped the purple phase, hence the reason he wanted to be known as Purple Car Wash Spaghetti Max (trademark pending). During this period, Max ate lots of carbs. Our car was very, very clean, especially since he liked going through the car wash twice in a row. One year, I made him a portable car wash for Halloween.

Next, the movie Cars came out, and Max got really into Lightning McQueen. Then Cars 2 came out, and he needed All The Merchandise.

Three years ago, Max decided he wanted to be a firefighter when he grew up. He began calling himself Fireman Max. We visited our fire station at least once a week, along with others. We amassed all sorts of toy fire trucks. In March 2016, Max did a fire safety presentation for his bar mitzvah's good deed project, and both of us were so proud.

Now, he had career aspirations. And the interests kept maturing: Max got into traveling places, starting with a Chicago trip he planned; he wrote guest posts about it before and after. These days, the wanderlust continues. He's got his sites set on Las Vegas, the next boys' trip he's going on with Dave (and, this time around, Grandpa Michael). Max tells everyone he knows or meets that they're headed to Las Vegas, and repeatedly talks about his schedule—leaving for the airport at 6:45 a.m., birthday dinner at 6:30 p.m. at Benihana's, a Dairy Queen ice-cream cake, visiting a fire station, yada yada.

When Max was an infant, the pediatric neurologist told us to expose him to as much as possible to help expand his mind. At first it was next to impossible, because he had sensory issues that made him fear crowds and noise. But now, all he wants to do is explore the world. Throughout the week he keeps asking what we're doing on the weekend to make sure he's fully booked.

Recently, Max got it into his head that he'd like to take the train to school instead of the bus. Last Friday morning, Dave and he headed off to the station. As luck would have it, there had been an accident and the trains weren't running. Max took it completely in stride. They'll be going tomorrow morning instead, just a dad and his son headed to school, anywhere and everywhere.

Monday, September 25, 2017

"It's disgusting!" he said: Everyone's got an opinion

None of my children hesitate to make their opinions known, they just have various ways of doing it. Ben likes to shriek in excitement or disappointment (both at the same extreme decibel levels). Sabrina tends to cock her head to one side, look you in the eye and speak her mind. Max, he likes to repeat himself again and again and again.

It happened Saturday night, when we went out for sushi. We visited a restaurant we've been to before that Max has always liked. He ordered his usual: miso soup and two avocado rolls, no seaweed (that's hard for him to chew). "Sixteen pieces!" he informed the server, verifying that each roll came with eight.

At some point into the meal, though, Max decided he wasn't into it.

"It's disgusting!" he announced.

I almost spit out my spicy tuna roll, because I started laughing. I couldn't help it.

"What's disgusting?" I asked.

"This!" he said, pointing to his mishmash of soup and sushi.

"That's how you always eat it!" I said.

"I know!" he answered. And then: "It's disgusting!"

I'd never even heard him say that word before.

Max wasn't noting this very quietly, either, and the tables were close together. For once, I was grateful that his words aren't always intelligible, because he kept saying "It's disgusting!" every few minutes. He had a grin on his face the whole time.

The sushi at this place is actually really good, so I didn't get why Max had taken a dislike to it.

"Please, don't say that in front of our server, it's not nice," I cautioned him, and he refrained. But the second she was out of earshot: "It's disgusting!"

Dave and Sabrina were too busy stuffing their faces to notice. Meanwhile, Ben was putting his hands into his bowl of ramen noodles then running noodles through his hair. Disgusting!

I picked up a piece of salmon sushi and popped it into my mouth as Ben combed more noodles through his hair and Max chanted "It's disgusting! It's disgusting!" We've come a long way from those days when Max had issues with noise and crowds and going out to restaurants was like an episode of Survivor. Max is alarmed now only by eating weekend dinners at home (he looooves to go out)—and sushi he is over.

Max does have a tendency to perseverate. It's comforting to him. But I think part of what happened Saturday night was Max's pride in asserting his opinion. That meal was not up to his standards, and he wanted to make quite sure we all knew it.

He didn't stop till we left the restaurant, then let it go. But when it came time to write his weekend recap for Monday homeroom, there it was, right at the top of his list:

"I went out to sushi. It was disgusting. On Saturday."

Friday, September 22, 2017

The Disability Blogger Weekend Link-up: You are here

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: A return to Early Intervention, and it's all good

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, September 21, 2017

When your child knows his strengths

I went to Max's back-to-school night last week. Students had written up profiles of themselves that the homeroom teacher tacked up on a bulletin board outside the classroom. Max's read:

"I like to eat sushi and miso soup and 8 avocado rolls" (He meant 8 pieces)

"I like to read books"

"I like books about fire trucks."

"My birthday is December 10"

And most impressive of all: "Something I do very well is...make friends."

For years, I've helped Max see his strengths. That's a basic part of any parent's job description, but it's seemed extra important with a child who has physical and cognitive challenges—I don't want him to ever feel like he's lacking in any way. While we don't go overboard, because that defeats the validity of praise, we do regularly dole it out.  Dave and I rave about Max's keen sense of direction when he tells us which way to drive if we go the wrong way. We give him props for being an awesome big brother to Ben when he helps Ben out or warns him not to climb up on the kitchen chair. We praise him for knowing the answers on his homework worksheet. I tell him that he a good hair day every day.

Max's teachers have been instrumental in building up his confidence, especially his former one, Linda. "You're a smart guy!" she said to him one day years ago, and the phrase stuck. "I'm a smart guy!" Max would tell me, beaming, and he believed it.

Thing is, I rarely otherwise hear Max tooting his own horn. While Sabrina will come home gushing about acing a test or running for several miles during cross-country practice, Max doesn't yet do that. Which is why it was so heartening to stand there in the hallway of his school and read that line on the bulletin board. Yes, he really is good at making friends—Max is exceptionally personable and charming. And I was glad to know he knows it.

I was equally happy to read about his plans for the school year:

Wednesday, September 20, 2017

I will gladly eat that plastic hot dog for dinner

After I put Ben to sleep the other night, I came downstairs and heard clanking in our dining room. I walked in to find Max playing with Ben's toy barbecue set. He flashed me a big grin.

Max used to have one of these when he was little. I can still hear its voice: "Let's fire up the grill!" Except Max couldn't grasp the tools or play food. He also wasn't into pretend play.

"Hey, Max, I'm hungry—want to make me dinner?" I asked.

"YES!" he said, enthusiastically.

I headed off to the living room to catch up on email.

Max walked in a little later carrying a pan with two hot dogs, then accidentally tipped them over. It took a lot of doing for him to pick up the franks—they're on the small slide, the plastic is slippery and he insisted on using his left hand alone (his "good" one). Finally, he managed to plop them back into the pan.

I took a bite.

"I don't know, Max, I think they need to be hotter!" I said.

"OK!" he said, and off he went.

I had a pang of "Is he too old for this?" But he was having fun flexing his imagination. He was working on his grasp. And I was relishing something that I hadn't gotten to enjoy when he was little.

I heard more stuff fall on the floor. "Ohhhhhhhhh!" said Max, frustrated. He walked back in carefully carrying the pan. Once again those hot dogs fell out and whenever he managed to grab one it slipped away. I got up to help. (In retrospect, I realize I should have slapped some on some Model Magic, this Crayola putty that helps Max grip stuff.)

"They're hot!" he cautioned me.

I blew on one and he laughed. Then I pretended to nibble it as Max walked off, likely to check on the lemon meringue pie he was whipping up for me. (My sweet tooth has a fantasy life all its own.)

"OK, Max, how much do I owe you?" I asked when he came back, sans lemon meringue pie.

He held up ten fingers.

"Ten dollars?!" I said. "Don't you think that's a lot?"

Max pondered that. "Five dollars!" he announced. So I went to my wallet and gave him five bucks. Then we headed upstairs to his room and put the money in his wallet. He's saving up for his boys' trip to Las Vegas in December. He says it's for food. (See: Mom of the Year.) (See also: What happens in Vegas stays in Vegas.)

To be sure, I can encourage more actual cooking, which would be more age-appropriate for Max and beneficial for our entire family, given the fact that I'm not much of a cook. Still, there is no statute of limitations on pretend play, just as there's no statute of limitations on anything developmental. It's not like Max is pretending to make scrambled eggs at his desk at high school; he realizes this is something to do at home, with me.

But if you'd like for Max to cook you a plastic hot dog, I'm sure he'd be happy to.

Tuesday, September 19, 2017

A return to Early Intervention, and it's all good

"He's eligible," the Early Intervention coordinator told me. We were seated in our living room along with Ben, a speech therapist and an occupational therapist. Ben had qualified for Early Intervention.

"That's good!" I responded. She seemed a bit taken aback by my enthusiastic reaction. "I have an older son who was in Early Intervention, and I'm glad to get Ben any extra support that could help him," I explained.

I meant every word.

Ben's speech has been coming along, but not at the pace it should. I knew it back last spring, and I didn't hesitate to get an EI evaluation. He didn't make it—he was just on the cusp. They told me to call back in a few months, and I did. This time, they decided he could use a weekly speech therapy session plus a separate one with a developmental interventionist, essentially a teacher.

We met with the teacher, Susan, last Friday. As is typical of EI, it consisted of play. Ben did an admirable job putting puzzle pieces in the right spot, making choices and asserting his needs ("Bubbles! NOW!"). The teacher kept remarking that he was doing an admirable job and had nice communication, along with how cute he was which makes him off-the-charts adorbs.

I was so calm and optimistic about Ben as we sat there, the opposite of how I'd felt years ago when Max entered Early Intervention at the ripe old age of two months. "Anxious mess" pretty much described my state back then, because I knew Max was at risk for not being able to do many things. "Get him as much therapy as possible," a renowned pediatric neurologist had advised us, and we did. Within the first year of his life, he had ten therapy sessions a week including speech therapy, occupational therapy and physical therapy. On weekends and after work, Dave and I took him to craniosacral therapy and hyperbaric oxygen treatment. We were driven by equal parts love and fear.

As the months passed, I grew to accept that Max was on his own timeline. I was still so worried about whether he'd walk and talk, and what the state of his cognition would be, but I took heart in the progress. When he started commando crawling at 15 months old, Dave and I rejoiced. It didn't matter that the other kids his age were walking or on the verge of it; Max was getting around, pulling his body forward with his arms because his limbs and torso weren't yet strong enough for him to crawl on all fours.

Max's physical therapist, Mindy, ultimately helped him walk, first with a walker and then independently. His speech came along, and then God and Steve Jobs (some believe them to be one and the same) invented the iPad, which opened up a whole new world of communication. When Max aged out of Early Intervention at three, I assembled a team of private therapists and got his EI occupational therapist to stick with us for a few more years. They've rotated in and out over the years, except for Jeri, who has been seeing Max since he was two years old.

I know there are parents out there who are hesitant to enroll their children in Early Intervention; one recent study I wrote about here found a big gap between the number of young children with disabilities and the number getting EI. Sometimes, parents worry about a perceived stigma. Sometimes, they just don't want to face up to the fact of a child's delays.

I have only gratitude to the legions of therapists who've seen Max through Early Intervention, at school and in our home, and who've helped him reach his capabilities and beyond. I am grateful to them for showing me and Dave how to better enable Max. I am excited to have two new OTs in his life who are helping Max figure out ways to be more independent, especially with personal care.

And now, I am genuinely happy to have therapists giving Ben a boost early on his life, when it can make a particularly big difference.

Toward the end of Ben's first therapy session, Max's bus showed up. Max headed into the living room and asked, "Who's that?" I explained that Susan was there to help Ben with his words. "Oh!" he said, and proceeded to plop down on the couch and watch and encourage Ben. "Good job!" he said when Ben put Mr. Potato Head's eyes on his face. A few minutes later, Sabrina walked in the door and she joined in as as well.

I watched my three children sitting together, and I felt so, so lucky.

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