Friday, January 17, 2020

The Disability Blogger Weekend Link-up awaits you


What to do if you're new  

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

Like this: Love That Max: The "ock you!" milestone

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

Thursday, January 16, 2020

If American Girl made a Special Needs Mom doll


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


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

The doll would feature:

-- A slightly harried look on her face
-- Hair in ponytail
-- Phone glued to her ear 
-- Black yoga pants with slight hole in the crotch nobody would notice
-- A voice that, upon pressing a button on the doll's back, would utter several phrases:

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

Accessories will include:

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

Pre-order now!

Photo: American Girl

Wednesday, January 15, 2020

The ock you milestone


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

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

"Um, what was it?" I asked.

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

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

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

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

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

Ben, sensing some good drama was happening, joined the discussion.

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

OMG!!! WHERE HAD HE GOTTEN THAT FROM?

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

"Sabrina told me!" he announced.

OMG!!!

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

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

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

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

Still: "OCK YOU!!!"

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

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


Phew.

Also: Awesome.

Also: Proof we had done something right as parents.

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

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

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

"Which ones?" I asked.

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

"Really? I asked.

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

"What else?"

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

At that, I burst out laughing.

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

Tuesday, January 14, 2020

The evolution and non-evolution of the r-word


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

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

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

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

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

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

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

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

Monday, January 13, 2020

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


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

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

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

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

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

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


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


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

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

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

Amen. 

Friday, January 10, 2020

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


What to do if you're new  

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

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

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

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

Thursday, January 9, 2020

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


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

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

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

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

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

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

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

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

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

"You OK?" I asked Max.

"Yeah!" he said.

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

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

Wednesday, January 8, 2020

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


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

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

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

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

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

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

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

Tuesday, January 7, 2020

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


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


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

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

Monday, January 6, 2020

My trip to Los Angeles: a post by Max


I want to move to Los Angeles.

I went to Disneyland and Universal Studios.


I rode Lightning Mcqueen ride


I went to race track


I saw a show and parade


I went to a house in Los Angeles.

I want to live there in Los Angeles.


I went to my favorite restaurant called Joes cafe

I had amazing Mac & Cheese.

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



I had  amazing ice cream at ice cream stare

I had very so good Sushi

I really want to move there in Los Angeles

I really I like it there in Los Angeles

I will study hard for USC School in Los Angeles

I will work at Los Angeles fire Department Engine 27



I had a cheeseburger at in and out burger

I walked around Hollywood.


Los Angeles is very so good and I like it there

I Love Los Angeles

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


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