Friday, June 30, 2017

The Special Needs Blogger Weekend Link-up: Share 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: The best drinking cups for children and teens 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, June 29, 2017

A simple way to be happier as a special needs parent

Sorting through your feelings as the parent of a child with special needs doesn't often happen. I mean, who has the time? And do you ever really want to go there? Life can be hard enough as it is. Blogging or journaling can help—and Gabrielle Kaplan-Mayer, an educator, author, blogger and mom to a 13-year-old with autism, has made that easy. She recently self-published Reflection, Expression, Courage: A Journal For Parents On The Special Needs Journey ($10.99, Amazon).

The 46-page journal that's filled with thinking points and blank spaces for responses, she notes, "is about creating a space where you can write when you're hopeful or scared, when you're feeling motivated or discouraged. Every parent goest through all of these feelings—but when your child needs extra support, your journey demands more of you. It's essential to create space that is yours, where you can express whatever you are feeling, free of any judgement."

Basically, it's like DIY therapy. Here's a sampling from the journal, to get you started.

My Blessings

A moment when my child brought a smile to my face is...

I feel connected to my child when...

I am rich with...

My Support

When I am struggling, I can...

When it's hard to ask for support, I can...

There are people in my life who just "get it"...

My Strength

I never knew that I could...

My child is stronger than anyone thinks because...

My Challenges

I wish I could help my child with...

On dark days, I want to...

Even though my challenges can be really hard, I face them by...

My Hopes

I imagine that my child will...

My child will always feel loved because...

Excerpted with permission from Reflection, Expression, Courage: A Journal For Parents On The Special Needs Journey, available on Amazon.

Wednesday, June 28, 2017

The challenges of summer when you have autism: a teen explains

This post has been removed.

Tuesday, June 27, 2017

The best cups and water bottles for kids and teens with disabilities

Enabling Max to drink out of a cup has been a journey; finding one he could grasp and control took time, but he's doing well these days and happily guzzling lots of water, milk and bazillions of chocolate milkshakes. These are the cups and water bottles that come recommended by me, other parents of children with disabilities and adults with disabilities. It's a good idea to check in with with your child's speech or feeding therapist about which one will work best for your child's abilities. Cheers!


Sassy Grow Up Cup
"My child is 4.5-ish, and our favorite is the Sassy Grow Up cup," says Cassandra. "Even when you drop it, it doesn't leak like the Munchkin brand did. We tried several straw cups, but he's a chewer and demolished the straws!" It has a 360-design for drinking anywhere around the room, plus it's BPA-free and top-rack dishwasher safe. You can buy it here.

Nuby No Spill 360 Weighted Straw Grip 'N Sip Tritan Cup 
"This cup is awesome for kids can't or refuse to hold one, and who can't use a straw," says one mom. A soft silicone spout prevents drips, while the touch-flo features regulates fluid intake with a child's sucking action. When they stop sucking the spout closes, and voila—leak resistant. Buy it here.

Reusable juice boxes
"It's the only think my daughter drinks from easily that is good for lunches and school," says Maggie of the Drink in the Box Reusuable Drink and Juice Box Container by Percidio Designs. "Doesn't spill, straw top, she can see how much is left. Love it!" BPA- and phthalate-free. You can buy it here. "Our son has used this one for many years," says Pamela of Rubbermaid's Litterless Juiceboxes. Top-rack dishwasher safe. You can buy a six-pack here.

Lolla Cup
"Lolla Cup has been a godsend for us!" says Tamara. "They are expensive but have a weighted straw, so it's easy to drink at any angle and there's no valve so it doesn't require a strong suck." Free of BPH and phthalates, with all parts made in the USA. Available in several colors. You can buy it here.

Flexi Nosey Cut-Out Cup 
Available in small (holds 1 oz.) medium (2 oz) and large (8 oz), or a combo pack with all three sizes, these are what therapists first tried on Max to help him drink. The cut-out helps children avoid tilting their head back to drink. Made in the USA; BPA- and phthalate-free. 

Thinkbaby Straw Cup
"We recently discovered the Thinkbaby Straw Cup and it's been wonderful for our three-year-old with hemiplegia—lightweight, perfect handles, holds a decent amount, never leaks!" says Kelly. "I'm going to buy one in every color." Free of BPA and phthalates. You can buy it here.

Recessed Lid Cup
An alternative to a sippy cup, this one has two handles and a recessed lid to encourage tongue retraction and improved lip closure. "We like this one for teaching open-mouth drinking—our SLP recommended it," says Tina. BPA- and phthalate-free. You can buy it here.

Pigeon MagMag Spout Cup
"My son is about 20 months, and we've found the Pigeon MagMag Spout Cup a lifesaver," says Wendy. It's BPA-free, with angled handles for easier holding and a soft and flexible spout. You can buy it here. (Similar to this: The Munchkin LATCH transition cup, available here.)

The Reflo Smart Cup 
This is what Max uses these days. You plug the top of the cup with the clear disc, and only a little liquid flows out, not a gusher. "We've been using Reflo cups since my son started school at 3," says Nicole. "He likes that they look like a normal cup when he's at lunch at school, and it slows the flow so he doesn't get a face-full every time he tips it up. He's 9 and still uses it daily." Made in the USA. Available in blueclearred/violetbright green or a four-pack with all colors.

Wow Cups
"My almost 9-year-old loves them," says Sara. "He needs help to open and close them, but as along as they're sealed, they don't spill." Free of BPA and phthalates. Available in six colors; you can buy a single here, or a four-pack here.

B. Box Sippy Cup
"No matter how a child is positioned or holding the cup, the weighted straw is in the water," says Rhi. "My son struggled with valves, but was fine with this one." Dishwasher safe and free of BPA, phthalates and PVC. Available in blueberry, pomegranate ink, apple, and orange.

Talktools Honey Bear Drinking Cup with 2 Flexible Straws
This little guy is a speech therapist go-to for helping a child learn to drink from a straw. Max still isn't there yet, but hopefully one of these days he'll...suck. I was heartened by this comment from Janine: "I find it easiest to drink fro a straw. But it took me 21 years to figure that out!" You can buy it here; it comes with one replacement straw.


Boon Snug Spout
"We have had great success with Snug Spout covers for regular cups for my brother, who is 24 with cerebral palsy with fairly decent mobility in arms but difficult with fine-motor skills and gross-motor planning," says Christiana. These genius thingies are 100% silicone, spill-proof, and they stretch over most cup sizes (2.5"-3.75" diameter). You can get a pack with three spouts plus a cup here.

Bendy Straws
"I always have a few on me—I put them in a travel toothbrush holder in my purse!" says Jill. "As long as I have a Bendy straw, we are good to go," adds Christy. You can buy them here.


This lightweight bottle works for kids and adults with the dexterity to press a button that opens the drinking spout. It's top-rack dishwasher safe, and BPA-free. "It's easy for my daughter to open and close, and doesn't break if she drops it," says Billie. Addds Elias, "We use this one too, it's easier to clean than others. Plus it's a relatively soft spout and a wide enough aperture to allow for his thickened drinks." BPA-free, top-rack dishwasher safe. Available in 20 ounce, 24 ounces, 32 ounce and 40 ounce in various colors. You can buy it here.

Sistema Twist 'N Sip Bottle
"I use this bottle because you can open it with the palm of your hand, no super-fine finger movements needed," says Ricky. "The bottle itself is somewhat squeeze-y, so a super-strong suck isn't needed (this is a big deal for me). Because of the sports top, it doesn't leak much if tipped over, even while it's open." Made in New Zealand; free of BPA and phthalates; available in several colors. You can buy it here.

Hydro Flask 
"One-handed operation, doesn't leak if upright, stays cold," says Melissa. Made of 18/8 food-grade steel, with a double-wall vacuum; BPA- and phthalate-free. You can buy it here.

OXO Strive Propel
"This is the best one for us," says Theresea. "Flexible straw, built in handle to slip thumb into for self feeding, various sizes available, age-appropriate for a teen. We don't go anywhere without one." Dishwasher safe and BPA-free. You can buy it here.

The Dopper  Original
The genius of this 15.2 oz. water bottle is that it's also a cup. Unscrew the cap and your child can drink straight from the spout. Twist off the metal top and voila, a cup. BPA and phthalate free, and fully recyclable. Available in a variety of colors here.

Camelbak Eddy
"My kid loves the chewy valve straw so much that we take them everywhere we go, he even takes one to school every day," says Nichole. "You can replace the valves if your child chews it to shreds. It's great for oral-sensory kids." Says Amanda, "I have to second this, though I use the adult ones as an adult with a disability. I like the wide handle on the lid that's easy to hook with one hand out of a backpack, and the fact that you can change the mouthpiece is a godsend since I am a bit of an oral-sensory seeker. I also work with children and youth with physical disabilities in a summer camp and many have the same bottle and they do well." BPA- and BPS-free, with a steel and polypropylene lid. Available in a variety of cool patterns, you can buy the kid version here (14 ounces) and the adult version here (20 ounces).

Fleximug Hands-Free Drinking Mug
Designed for people with physical disabilities and paralysis, it has a patented air vent that makes it wasy to use with mild-to-moderate reduced lung function. "This has given my son a bit of independence," says Brian. Made of 18/8 food-grade stainless steel; available in various straw lengths. You can buy it here.

Monday, June 26, 2017

Accommodating children with disabilities: Anything can happen, if you let it

I took Max and Sabrina to see a sensory-friendly showing of Mary Poppins on Friday. The performance was great, but equally so was the overwhelming gratitude I felt that kids and teens could do their thing at their performance—make noises, run around, ask loud questions—and it was all good.

The Paper Mill Playhouse in Millburn, NJ, was the first professional theater in the country to offer performances for people with autism and other developmental disabilities. A couple of weeks ago, the National Endowment of Arts awarded its Theater for Everyone programming a $40,000 grant. (Yet another reminder to write your elected officials about supporting funding for the arts.) In recent years they've had autism-friendly shows for Elf, The Little Mermaid, The day before the performance, ticket holders were invited to "Meet Your Seat," a free open house to help soothe children who may be fearful about attending a performance.

I noticed sensory play stations and a Chill Out Zone as we walked to our seats on the mezzanine level. If the show got to be too much, a child could come out to the activity area, hang out and watch the show on a monitor. There were trained professionals and volunteers standing by to pitch in. Along with the playbill we were handed a paper with photos of the performers, plus a summary of the plot. (Parents can also check out a sequenced social story on the website prior to the performance, complete with photos of the grounds and theater interior, along with production photos.)

The lights stayed on low throughout the performance; the sound level was at a lower volume. Snacks were welcome. Kids made various noises throughout the performance, and it was OK. One boy stood by the side of the stage holding a glow stick. No problem. Another boy ran down the center aisle up to the stage; his mother was right behind him and escorted him back to his seat. No biggie.

"You should not be concerned that anyone's behavior will interrupt the show," reads Paper Mill's FAQ. "The actors have been prepared for a variety of sounds and movements."

How awesome is that? I'd say it's...

I usually have a low tolerance for musicals, and the movie version of Mary Poppins lulls me into a coma. But the Paper Mill production was amazing, and we all sat there enjoying the singing, sets and magic. I stole glances at Max and Sabrina to watch the joy on their faces. For once, unlike other times when I've taken Max to shows or movies, I didn't have to worry about him asking me questions during the performance—who's that? Where's she going? Why's he doing that?

I considered how lucky we are to be living in a time in which people recognize the needs of our children. I can't recall sensory-friendly anything when I was growing up, let alone shows on Broadway. These programs were not even around when Max was little.

We may have a ways to go in terms of people understanding what it means to have autism or cerebral palsy or Down syndrome, or to be afraid of loud noises and crowds, but there's a growing awareness that our children deserve accommodations that allow them to enjoy the same pleasures as their peers. And for that, I am seriously grateful.

One of the last songs in the play is "Anything Can Happen." The first few lines:

Anything can happen if you let it

Sometimes things are difficult
But you can bet it doesn't have to be so
Changes can be made
You can move a mountain if you use a larger spade

That is so true when it comes to accommodating people with disabilities. It's not that hard; mostly, it's a matter of people opening up their minds more than their wallets.

Anything can happen...if you let it.

Also see: 

8 ways to include kids with special needs in programs, events, classes, camp, wherever

Friday, June 23, 2017

The Special Needs Blogger Weekend Link-up: go!

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: If you think these t-shirts are funny, get a clue, a heart, a soul

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, June 22, 2017

If you think these t-shirts are funny, please get a clue, a heart, a soul

A lovely mom I know emailed me last night, distressed about t-shirts. She has a child with a rare genetic condition, tuberosis sclerosis complex (TSC), which causes tumors to grow in various organs including the brain, heart and eyes. It can also result in developmental delays and epilepsy, and it's the primary genetic cause of autism. A parent she knows in a TSC support group spotted an offensive t-shirt on Zazzle that states: "My mommy says I'm special (short bus special...)." A search revealed a number of "short bus" tees on the site.

"This is simply another way of mocking people in the vein of calling them 'retarded,' since bussing for special needs individuals and children is often on smaller buses nicknamed 'the short bus,'" she noted.

I had the most awful case of deja vu as I read her email. I found the post where I'd written about a short bus shirt nearly five years ago for sale at Hastings (now closed), and a t-shirt on Zazzle that read "Retards do it gooder." After much hell was raised on social media, both companies removed the shirts.

Sadly, they've continued to fester online. Zazzle has a Short Bus Clothing & Apparel section with doozies such as "Fresh off the short bus" and "I'm so special I drive the short bus" and a shirt proclaiming "Intellectually challenged" with a picture of a small bus. There's also a two-page Retards T-Shirts & Shirts section with tees that have a mix of negative and positives messages (an improvement over their eight pages of offensive "retard" shirts from five years ago). Several online sites, including Be Wild and RedBubble, sell the shirts too. Amazon also has a bunch, in clear violation of their examples of prohibited listings which include "Products that promote or glorify hatred."

Over the years, people bothered by those of us who've spoken out against the r-word" have claimed that our efforts are futile. "Another term will just take its place," they've said.

"Short bus" does seem to be gaining popularity as a slur for intellectual disability. It's a hashtag on Instagram and Twitter. Even as the usage of the r-word seems to be on the decline (thank you,, here we are again, parents speaking up to raise awareness and gain respect for the ones we love. "Short bus" is offensive and demeaning to people with intellectual disability. As a t-shirt message, it encourages people to view those with ID as lesser human beings. Why is that OK? Ridiculing people with intellectual disabilities is the last form of prejudice tolerated in this country.

My son sees nothing shameful or disgraceful about riding the short bus, or who he is, and I hope he never will. How dare people deride him, and others like him. I'll say it once again: My son with disabilities already has enough societal challenges to overcome in this world without names that make him out to be a joke.

When members of that parent group emailed Zazzle, my friend says, Zazzle responded with a generic message indicating that their community of designers could promote their own creations on Zazzle, and that parents could report shirts that violate the company's guidelines on the individual shirts' pages. Plenty of those shirts remain on the site.

Have your say: email or tweet @Zazzle, email and tweet at @RedBubbleHelp. Log into your Amazon account to reach out to customer service.


Once again, our voices made a difference—the sections for short bus and "retards" shirts are gone, hopefully to never return. Yesterday, Jay Ruderman—activist, philanthropist and president of the Ruderman Family Foundation, which focuses on the inclusion of people with disabilities—shared on Facebook the note he'd sent to Zazzle asking them to take down the offensive merchandise, and their response. Although it's heartening that these shirts been removed, more importantly, I hope that in speaking up we've raised awareness about respecting people of all abilities. A lack of respect and understanding is, ultimately, the underlying problems that need to be resolved. The more we speak up, the more we help people understand that our children are children, like any others, who don't deserve to be the butt of jokes.

Here's the response from Zazzle's content management team:

Zazzle provides and open marketplace where user-generated content can be used to create a wide variety of products and apparel. By its very nature, the platform thrives on creativity and the opportunity for people to share their designs with the world. When a product is brought to our attention that violates our terms of service, we take swift action to have the product removed. We've removed the items in question. Thank you for raising the issue. Zazzle is a marketplace so we rely on our community to maintain an open dialogue with us—than you again for alerting us to the offensive items.

Wednesday, June 21, 2017

Chill out, Mom, he reminded me

Summer starts today, and I didn't even realize it was upon us until Max reminded me last night. June has been the typical whirlwind of events and end-of-school-year-to-dos, with an extra dash of Max thrills given his recent graduation and various performances. Besides walking the runway in a fashion show and singing in a music recital, last week, his school had a fundraiser and he and some other students opened for Leslie Odom, Jr. (yeah, that guy from Hamilton). Yes: I. KNOW.

Last night, I was doing my evening circus juggling act; that particular performance consisted of getting Ben to bed, cleaning up the kitchen, de-cluttering the living room, packing for camp, figuring out with Dave who's handling various events this week, watering the plants outside, organizing Max's surgery in August (more on that another time) and munching on a peanut butter and jelly sandwich for dinner in between.

I sometimes wonder what my kids think of me, this whirling dervish of a woman who's always puttering around the house and who likely makes parenthood look like the most un-fun gig in the world. I try not to let my stress seep out, but inevitably it does in deep sighs. "You OK?" Max likes to ask, which always does make me OK.

Max walked over as I was shoving bedding inside Sabrina's gigantic duffel bag. He said something, I wasn't sure what. So I grabbed my phone and let him type in an email. Before he'd even finished the word, I knew what he was saying:

"Tomorrow is summer," he wanted me to know. Max smiled at me, expectantly, thinking that I would get giddy. But my mind was on packing and getting chores done. "Yes! It's summer!" I said, mustering up enthusiasm.

Max saw right through me.

"Summer is GOOD!" he reminded me.

And that made me laugh. Because of course summer is good, and maybe instead of waiting for June insanity to be over to kick back I should be doing more of that right now. I'm always trying to finish up stuff before I let myself relax, but the thing is, there is no finishing.

So I took a break and Max and I sat on the porch in the dusk, my favorite time of day, and we talked about ice-cream and going to the pool and camp and all things summer. Then we headed back in so he could go to sleep and after he went down, I proceeded to do eleventy billion things.

But yes: Today is summer. And so, happy summer to you, friends. I hope you get your chill on soon, even for just a bit.

Image source: Flickr/barnyz

Tuesday, June 20, 2017

The world's first accessible water park for disabled kids of all ages just opened: wheeeee!

All children deserve to have good, wet summer fun, but not everyone can; water parks can be tricky to navigate for those in wheelchairs, and the ride and attractions may not be accessible at all. A new water park geared toward people of all ages with disabilities has literally leveled the playing field. Morgan's Inspiration Island in San Antonio, Texas, which just opened this weekend, is billing itself as the world's first ultra-accessible water park for guests of all ages and abilities.

It's fun, it's free for guests with disabilities, and it's about time kids of all ages had a place like this.

The park has six major elements with a tropical theme. The River Boat Adventure ride twists and turns for a good five minutes through a jungle setting, with bird and animal sounds. Then there are five water play areas: Hang 10 Harbor, Rainbow Reef, Shipwreck Island, Harvey's Hideaway Bay and Calypso Grove—with raintrees, water falls, pools, geysers, jets, water cannons and tipping buckets. Water at the Rainbow Reef splash pad is warmed, for guests who are sensitive to cold. The park's in a nice setting; it overlooks an eight-acre lake. The centerpiece is a seven-story lighthouse with a rotating beacon on top. 

Every spot is wheelchair accessible. Even better, the park provides custom-made PneuChairs, lightweight wheelchairs propelled solely by compressed air—no heavy batteries, no electronics. There are two other waterproof models: a rigid-frame manual wheelchair and a push-type stroller. They're all complimentary. There are roomy private areas where guests can transfer from their own wheelchairs into Morgan's Inspiration Island waterproof ones. 

The park is accessible in multiple ways. Guests who get overwhelmed by noise can retreat to private, quiet areas (although attendance is capped so that it's generally a calmer experience than other theme parks). There are signs in Braille and a service-animal rest area. The giant bucket of water that fills then tips over onto guests at Shipwreck Island has a visual cue for guests who are deaf or hard of hearing. The park provides waterproof bags to prevent ventilators and O2 tanks from getting wet, as well as water-collar covers for guests who need to cover tracheas. 

Guests can get waterproof wristbands with RFID (radio-frequency identification) technology that enables parents to go to a Location Station and pinpoint where their children or other members of their party are. There are a couple of places to grab a bite and gifts, and private cabanas for rent. Oh, and the park was designed with conservation in mind; water is continuously filtered and recirculated, and will be stored in humongous underground tanks when the park is not in operation.

It's so cool that children and adults with disabilities will be able to experience a water park for the first time. I also love that a generation of children will grow up with this in their lives, a place where they'll feel welcome, included and like any other kid out having a good time. They'll take the fun for granted, just as they should.

Founder Gordon Hartman, a philanthropist and former housing developer, first created the theme park Morgan's Wonderland in 2010 (it's right next door to the water park). Both are named after his 23-year-old daughter with disabilities. As he said, "We decided to call it Morgan's Inspiration Island because Morgan truly has been the catalyst for every project we've pursued to help the special-needs community."

Hartman and Morgan designed the park with water-park consultants, local doctors, therapists who work with people with disabilities, special-education teachers, parents and caregivers, along with people with disabilities. He doesn't consider it a "special-needs park," he's said: "It's a park of inclusion...designed with special-needs individuals in mind and built for everyone's enjoyment."

The park is open daily through the summer until mid-August, then on weekends in August and September; it's best to book online at Morgan's Inspiration Island.

Photos: Morgan's Inspiration Island

Monday, June 19, 2017

When you compare your child with disabilities to his peers with disabilities

I tried not to stare, but I couldn't help it. I was at an event with Max this weekend, and two young people with disabilities were talking with each other. Their conversation had gone on for a good 15 minutes, and I kept looking over as they smiled, laughed and nodded. I wondered what they were chatting about. I wondered when Max would reach that level of engagement with a friend.

I've been having all the feels these past couple of weeks, with Max graduating from middle school. He's growing up, fast. But the reality of him going to high school (HIGH SCHOOL) has me pondering his progress.

When Max was a tot I used to regularly compare him to typically-developing kids his age, a habit that caused serious anxiety and pain. Would Max ever walk like the other children? Talk like the other children? Play with toys like the other children? Spoon birthday cake into his mouth like the other children? Climb up the jungle gym at the playground like other children? Ride a trike like the other children? Be anything like the other children?

Sometimes, I'd reach out to other parents of babies who'd had strokes and ply them with questions: At what age did their child pull to stand? At what age did their child sit up, crawl, walk, babble, talk? Hold a cup? Hold a spoon? Hold a toy?

Eventually, the compare-a-thons stopped as I grew to accept Max for who he was, and embrace that he was on his own timeline and nobody else's. There wasn't one particular thing that helped me to do that; it was the passage of time and Max's continued well as my own. I've often said that as Max has made my progress, so have I. It's been an evolution for both of us. I suspect that will always be true.

And so, I was surprised to find myself comparing Max to these other teens, and feeling both wistful and a little bummed. Max is plenty social and chatty. "How are you?" he regularly asks me and others, and he means it. He's just not at the point where he has extended conversations with peers, and it hurt to watch the other teens enjoying each others' company in a way that Max can't yet.

As self-aware as you may be as a special needs parent, it doesn't stop those old yearnings from resurfacing.

The hurt ebbed away after we left, only to be replaced by a reminder that Max loves life as he knows it, and that I need to quit projecting my wants onto him. This week, the parent of a student in Max's class had stopped by as they watched something on the whiteboard, and came upon Max holding her daughter's hand. "They held hands the whole time I was there," she said.

I welled up as I stared at the photo she sent.

He's content. He's got friends and relationships, even without conversation as I know it. He's happy.

And once again, I packed my feelings away and took heart in the reality of my beautiful boy.

Image: Flickr

Saturday, June 17, 2017

The Special Needs Blogger Weekend Link-up: One day late, just as great!

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: That time he walked a runway of dreams

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, June 15, 2017

He doesn't trust me to read food labels. Woo hoo!

I walked into the kitchen to find Max digging through the garbage.

"What are you doing?" I asked, a reasonable question.

Max continued to poke around, not saying a word. Then he pulled out a box for Trader Joe's baked ziti; the tray was heating up in the microwave.

"Uts?" Max asked.

He wanted to know if it had nuts, which he's allergic to. Usually, Max's pasta fix is TJ's mac and cheese but last night I'd planned on eating ziti for dinner and Max decided to have it as as a bedtime snack. He's eating like a teen boy these days.

"Nope, no nuts," I said.

Max proceeded to take the box to the table, sit down and stare at it. He needed to see that there were no nuts.

It was an exciting moment for me, even if he stole my dinner.

As Max gets older, the thing I want most for him is independence—which starts with him caring about his well-being. For a while now, he's been making sure that new foods he tries do not have nuts. This was the first time he thought to look at the box. And it was the first time that he didn't just take my word for it; he wanted to see for himself.

Max is also on top of taking his anti-seizure meds, which come in compounded form. Last weekend, while we were out to dinner, he started shaking his hand up and down and gesturing toward my bag. Eventually I realized that he was mimicking shaking the powder into food—a reminder for us to give him his meds.

I showed him where the ingredients list was on the Trader Joe's package, and pointed to the bottom where allergens are called out.

"Does it say the word 'nuts?'" I asked.

"No!" he said.

"That means it has no nuts," I explained.

"That's good!" said Max.

And it so was.

Wednesday, June 14, 2017

He's going to Las Vegas and I'm Mom of the Year

"I like pina coladas!" Max informed the two women. We were at the Runway of Dreams Gala last Thursday, and they had recognized him from the blog. Turns out they live in Las Vegas, the city Max is planning on visiting in December. Why? Because he saw some Las Vegas fire trucks in a video and decided it would be a good place to go. Max was telling them all about his plans, which evidently includes tropical drinks.

Lately, Max has been telling everyone he meets about his trip to Las Vegas. (Dave will cash in some air miles and they'll go around Max's birthday in December.) A new occupational therapist came over to the house yesterday to meet Max. She wanted to talk about life skills; Max wanted to discuss his dining plans for Las Vegas.

Last weekend, Max attended a recital for a group of kids and teens who get music therapy through Jammin Jenn. (And yes, it was quite the week between his graduation and walking the runway.) Participants sang Over the Rainbow, Imagine and Don't Stop Believin'. One played bells, another the steel drums. But my Max? He sang a song he and his amazing music therapist, Amanda, made up called—wait for it—Las Vegas! Where Max will drink pina coladas, see the Beatles show (I'm afraid to look up whether it's topless) and have good luck.

It was rather awesome. Yes, I've been proud of him for singing standards like Let It Go, but crooning about a joy trip to Las Vegas involving pina coladas is a whole other level of music therapy. 

The lyrics are below, in case you'd like your child to sing this at a recital or impress relatives at your next family gathering. 

I want to go to Las Vegas
It's a six-hour flight
Las Vegas is new to me
It will be a delight
I will stay at my cousin's house
We'll go out to eat
The weather will be very hot
I'll eat mac and cheese...and meat!
I want to see the fire house
And see the fire trucks
I want to stay for two weeks
And have good luck
I want to swim at a hotel
And wear goggles too
I'll drink a pina colada
And have so much fun with you
I want to see the Beatles show
And sing "Yellow Submarine"
I will go with my cusin
And then we'll go to Dairy Queen
Las Vegas, Las Vegas
It's a six-hour flight
Las Vegas is new to me
It will be a delight!

Image source: Flickr/Tim Shields BC

Tuesday, June 13, 2017

That time he walked a runway of dreams

Max modeled in the Runway of Dreams Gala last Thursday. I signed him up because I wanted to support the organization, and because I thought he'd enjoy it; when I asked, he said he wanted to do it. As is often the case with Max, I couldn't have imagined how things would play out.

Dave and Max drove over from school early that afternoon. I met them at Cipriani 25 Broadway in New York and there was Max, standing in front of the building and wailing. "They didn't call him Fireman Max," Dave explained. I calmed him down, and Dave went off to find some restorative mac 'n cheese. Max ate it as the crew set up and immediately cheered up.

Mindy Scheier, a designer who's mom to a son with muscular dystrophy, started the Runway of Dreams Foundation. Oliver's her inspiration; when he wanted to wear jeans like every other kid, she created a pair with magnetic closures, then went on to found Runway of Dreams to promote diversity in the fashion industry and advance adaptive design. Mindy accomplished something else extraordinary: She partnered with Tommy Hilfiger to create the first designer line of clothing for children of all abilities. Max was finally able to close a shirt on his own, a thrill for both of us. 

Max hesitated to line up for the rehearsal, but I coaxed him into it. There were 24 other children, teens and adults of all abilities including ones with limb differences, Down syndrome, cerebral palsy and autism, along with others in wheelchairs. 

When it was Max's turn, he wanted company out there and a staffer walked with him. "Hey, Max, would you like to try it yourself?" I asked after he came back. "Yes!" said he, and off he went. I'd wondered whether he would do the butt wiggle he'd been practicing at home, but he did a foot slide. He seemed pretty pleased with himself.

We had a lot of time to kill until the runway show started at 8:45. Max and I chatted with a mom I knew from online, Shellie, who'd flown in from Illinois with her son, Jayden. Max made me message our cousin in Las Vegas to tell him all about his plans for his fantasy trip there. Guests arrived for cocktail hour. Max peeked in. Dave snagged wine. Finally, it was time to get dressed.

Max looked great in his outfit—a red tee, a color-blocked jacket in navy, white and red and coordinating navy joggers—but he was getting tired and in the waiting area, he plopped down next to a teen boy in an armchair (personal space: still working on that). Max perked up when he got his hair done, although he resisted the flat-iron. "It's for girls," he pointed out.

Max kept saying he wanted to leave. Some evenings he crashes at 6:30, and so it was definitely a late night for him. The extremely friendly and patient Runway of Dreams staff (shout out to Debbie!) were likely a little dubious about whether the temperamental model known as Fireman Max would lose his mojo, because they offered to have him walk the runway with someone else. I said no thanks. I had a feeling that if he could wait it out, he'd be into it. He ended up stalking Mindy and staring at her adoringly—she did look dazzling!  

Max wanted to watch the evening unfold, and stood on the side watching. Several awards were handed out. Matthew Walzer—who famously wrote a letter to Nike in 2012 about his desire to tie his own shoelaces—presented to Nike Senior Director of Athletic Innovations and Explorations Tobie Hatfield, for developing more accessible footwear including FlyEase (Max wore a pair). A young woman named Sarah Steger won a $5000 scholarship to continue her pursuits in adaptive design and innovation. 

Kyle Maynard also received an award. He's the motivational speaker, author, entrepreneur and award-winning mixed martial arts athlete who's known for becoming the first quadruple amputee to reach the summit of Mount Kilimanjaro and Mount Aconcagua without the age of prosthetics. Kyle spoke about the challenges of dressing when he was growing up, including the time when he wanted to hang out with friends one afternoon and called his mom at work to ask for assistance getting dressed and she couldn't be there for him. Kyle noted the adaptive techniques he developed, including bending a paperclip to form a hook that would help him get on a sock. Max watched, mesmerized, as Kyle demonstrated how he pulls on a sock. 

Finally, it was time to walk the runway. Darnell, the very cool Tommy Hilfiger styling coordinator, straightened Max up as Max watched the video monitor. There were several interns on hand and a cute girl named Macie from Tommy Hilfiger offered to be Max's buddy and make sure he got in line. Max liked that.

I crouched down at the end of the runway, taking in the show and loving that the walkway had become a roll-way, a walker-way, and a celebration of being comfortable in your own skin—and stylish—every which way.

And then, it was Max's turn. Only, no Max. You know that moment in The Sound of Music where it's announced that the von Trapp family (spoiler alert!) has won the festival and the spotlight pans to where they're supposed to enter only they never show up and then a Nazi guard steps out and announces "They're gone!"? It was like that, minus the guard. Just a big old pause, with all eyes on the runway entry. 

I figured Max had backed out. But suddenly, there he was...with Mindy by his side. And yes, that was a butt wiggle he did mid-walk. And yes, that is me laughing-crying in the background. 

I'd told the staff we wouldn't be around for the finale, as it would be too late for Max. Only wouldn't you know it, he insisted on staying. And out he came with everyone else, smiling and dancing and celebrating a stellar night and a runway of dreams come true. 

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