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 words "retard" and "retarded" 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 word "retard" seems to be on the decline (thank you, r-word.org), 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 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 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 support@zazzle.com or tweet @Zazzle, email support@bewild.com and tweet at @RedBubbleHelp. Log into your Amazon account to reach out to customer service.

After seeing a number of these offensive shirts, a dad of a child with cerebral palsy had his own response: He came up with alternatives for his son, available on Zazzle.

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 development...as 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. "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. Only 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. 

Monday, June 12, 2017

The only better thing than being proud of your child is....


The only thing better...


...than feeling so incredibly proud...


...as you watch your child graduate from middle school...


...is seeing the pride...


...he takes in himself.

Friday, June 9, 2017

The Special Needs Blogger Weekend Link-up: The water's warm, come on in!


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: Wonders never cease when you have a 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, June 8, 2017

Wonders never cease when you have a child with disabilities


I was upstairs changing Ben's diaper when I looked out the window and saw the most amazing thing: Sabrina was teaching Max how to play lacrosse.

It's not that I didn't think Max was capable of trying his hand at lacrosse—I knew he was. His dexterity and grasp have improved. He can play catch using both hands. He enjoys being competitive, as was very apparent at The Special Olympics last year.

It's that every single new thing he pulls off is a thrill, because I know just how far he's come.

I've often said that I don't look at Max and see a child with cerebral palsy—I see Max, a son as perfect and imperfect as any of my children. But whenever he scores an achievement, I also see his past.

I'm not just seeing a boy standing and playing with his sister on the street; I'm seeing a boy who for so many years could not play on his own because he didn't understand how.

I'm not just seeing a boy listening to his sister give him instructions; I'm seeing a boy who took a long time to understand spoken sentences.

I'm not just seeing a boy maneuvering a lacrosse stick; I'm seeing a boy who worked so hard at ages three, four, five, six, seven, eight, nine to learn to grasp a drumstick, a spoon, a pencil.

I'm not just seeing a boy tossing a lacrosse ball. I am seeing a boy who, as a three-year-old, had an occupational therapist who used to wrap her hands over his and teach him how to hold a ball. I'm seeing a boy who, years later, would finally learn to throw a ball.

I'm not just seeing a handsome, cheerful, good-humored boy focused and engaged. I am seeing the boy who has turned out like anything but the dreadful, gloomy predictions of the NICU doctors.

I'm seeing this boy's past struggles, his progress, and his awesome present. And even though he is just a boy learning lacrosse, he is not just a boy learning lacrosse. He is a wonder, and they never will cease. 

Wednesday, June 7, 2017

There is no shame in enrolling a child in early intervention


Recently, Max's physical therapist from early intervention stopped by to pick up a baby car mirror I was passing along to her grandson. Max didn't remember her, but I get emotional every time I've seen her around our neighborhood. She's the one who helped Max learn to crawl on all fours, building up his limb and trunk strength. And she's the one who got him walking, first in a walker and then on his own. I owe her a debt of gratitude I can never pay off.

If you have a child with disabilities, you know just how vital early intervention (EI) can be for giving tots a jump-start with cognitive, behavioral, and/or physical skills. I found out about EI from a hospital social worker a few days after Max had a stroke at birth. As soon as we got home, I called for an assessment and begged to make it happen fast. Within a couple of weeks, Max was enrolled in EI and soon after, he started getting physical therapy.

In the face of black-and-white proof of my baby's brain damage, those awful x-rays, I was driven to find him all the help I could. Yet a lot of children don't get the support they need. "There is a bag gap between the number of children with disabilities or delays and the number of children enrolled in early intervention services," says Megan MacDonald, an assistant professor at Oregon State University's College of Public Health and Services, and the coauthor of a recent study on EI. One reason the research, published in the Journal of Early Intervention, found: when a healthcare entity (such as a pediatrician) is involved in recommending EI, a child is more likely to get enrolled than when the referring agency is education-focused.

Ultimately, though, the stigma associated with early intervention can get in the way. I've heard it voiced over the years by parents of children with delays who were concerned that their kid's education could be haunted by the therapies he received. I've known parents who worried about letting family and friends know their child was getting early intervention, fearful of labels. And then there's the fact that some parents don't want to acknowledge that something is "wrong" with their perfect child.

Living in denial and believing that a kid will eventually come along is far less scary than recognizing that a child is not developmentally where he should be.

Yet the sooner children get help, the better. Research has conclusively found that early intervention is highly effective for young children who have—or at risk for—developmental delays. It can boost their language and communication, cognitive development and social/emotional development. One review of studies published in the journal Pediatrics found that early intervention helped toddlers with autism improve their IQ, language ability and social interaction.

Ultimately, that alone should prod a parent into seeking help. As for whether or not a child's participation in EI would end up on a permanent school record, the short answer is no. "The only information a school district receives is what the parent shares in the transition process," notes Jaime Silberman Bassman, an occupational therapist who works in the birth to three early intervention system in Pennsylvania. "Parents worry that a teacher will have preconceived notions about a child if they know he was in early intervention, but the truth is, the more the teacher knows, the more helpful she can be.

"There's so much I can say about how EI helps many kids who improve rapidly, get discharged and may never need services again," she continues. "For others, it can be the first in a long line of steps as parents start to figure out there might be a diagnosis or a longer-lasting disability." Yet getting your kids support early on could mean they'll need less of it later.

One of the many things you learn as the parent of a child with disabilities is to care less about what others think and to focus your energies on what matters most in this world: your child. You also realize that you are his most important champion. Picking up the phone to get an early intervention assessment may be a hard call to make but you're doing your job as a parent—and you're doing right by your child.

Tuesday, June 6, 2017

He's got places to go and people and couches to climb


At 19 months old, Ben has discovered the joys of climbing—on the couch, up the steps, all over Sabrina. Sometimes, Max falls asleep before Ben does and when I walk into Max's bedroom to tuck him in Ben will clamber onto his bed and poke at his face. Max thinks this is really funny. Ben squawks when I scoop him up and carry him out.

It's been a good ten years since I've had a kid climbing over stuff, and I don't much remember Sabrina being that rambunctious although I do recall that she liked to open the refrigerator and perch on the bottom ledge (Ben can't do that because we have a bottom freezer now). She also loved to tear up newspapers (Ben got the same gene). Dave and I are a little bit nervous (WATCH HIM!) and a lot amazed at this bundle of energy. Also: We are tired.

At Ben's age, Max was just getting into commando crawling, pulling himself along on his arms like a soldier. Watching him move around was as awe-inspiring as Ben's feats of climbing.

Sabrina's taken to calling Ben Monkey Boy. My favorite move of all is when Ben climbs into the space beneath his high chair and hangs. The other day, he sat there for a few minutes and played with a ring stacker, just a small moment that felt large. Mostly I'm chasing Ben around, holding his hand as he attempts to rock-climb up an armchair, or trying to hold him down on the changing room table as he does a back handspring. It's rare to catch sight of him staying put, let alone pondering and developing an inner life.

Two minutes later, he was climbing onto the couch again, flopping down and giggling as I held out an arm to keep him safe and laughed along with him.


Monday, June 5, 2017

Meltdowns take five years off your life


OK, technically your children's meltdowns don't take five years off your life because I would have been dead a long time ago. But they sure feel that way. I have still not totally recovered from one on Memorial Day Weekend.

Max's sensory issues have dwindled over the years, so that noise and crowds don't set him off like they used to. Still, Max is a boy who likes to have things work out just so. And life doesn't always work out just so. This means that the Memorial Day parade we attended last weekend in Stone Harbor, NJ, wasn't as big as the ones in years past. There were just a handful of fire trucks and rescue vehicles. Also, Max had gotten it into his head that he was going to ride on one of the trucks, but he hadn't told us. So there was disappointment on two levels. Max is usually an even-tempered, cheerful type but not when you get in the way of him and his fire truck dreams.

We were at the starting area right as the parade began, and we followed along on the sidewalk as Max stomped his feet and wailed. I didn't have any tissues on me (bad mom incident no. 802,549!) so I ducked into a restaurant, got some napkins and mopped his wet face.

Stomp stomp stomp. Sob. Screeeeeeeeech. Nothing I said placated him; he was in the meltdown zone. People stared. I don't really care at this point what others think, I just wanted peace and to enjoy our outing. We proceeded on the sidewalk, our own display of family dysfunction.

As we stood in the intersection where the parade turned onto Main Street,  I caught the eye of a police officer standing nearby. "Officer, the parade this year isn't that big because of the weather, but next year it should be longer again, right?" I said. And he came over, looked at Max and said, "Yes, it's smaller and yes, young man, don't worry next year it should be bigger again!"

Max wasn't buying it. He wailed some more. The officer wisely walked away to direct traffic.

A little boy nearby asked me, "What's wrong with him?"

"He's not happy," I said, stating the obvious.

I wanted Dave to take him back to the car, as I didn't want Max to think he could get away with behaving this way when he's upset. Dave thought we should calm him down by walking to the fire station. Disagreeing with your spouse as your child loses it only makes things more fun. I gave in. We started to trudge the two blocks to the fire station. The streets were filled but, like the biblical Red Sea, the crowds parted to let Max through.

When Max gets irrational in this way and wails and yells, it is completely draining. I felt bad for Sabrina, who at 12 years old is already embarrassed by everything, and Ben, just a little guy at his first Memorial Day parade. I felt bad for Dave and me, two parents just trying to show our kids a good time. And I was distraught with Max for ruining the event for us all, even as I understood where he was coming from.

At the fire station, Max continued to cry. A firefighter walked over to us; she remembered Max from a visit two years ago. She took Max and Dave into the station to use the restroom. Later, Dave told me what had happened. She had reiterated to Max that this year the parade was smaller because of the weather, but next year it would bigger.

"Not true!" Max told her. (See: "irrational.")

She also told me and Dave that we could call ahead of time next year and see if maybe Max could ride in a truck. We'll be making that call.

By the time we walked away, Max had calmed down. I didn't. We got in the car and headed home. When I spoke with him about his behavior, he grunted and said "No!"

This weekend was relatively calm. Still, a week later I am still thinking about what happened and wondering what we could have done differently. We talk events through with Max ahead of time, but unexpected situations happen. Maybe we should have taken him back to the car. Maybe there is some technique we have yet to figure out. Maybe this behavior, too, will recede over time as Max matures.

Maybe.

Friday, June 2, 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: I don't have special needs, he said

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 1, 2017

I don't have special needs, he said


Max started shuffling his feet as we walked around Mariner's Pier this weekend in Wildwood, NJ. He tends to do that when he's tired, and by late afternoon, he often is. We decided to hit one more ride before leaving, and headed over to The Flying Galleon. After Max walked up the flight of stairs slowly (there was no elevator), we came upon a long line. 

Because Max doesn't get wigged out by crowds as much as he used to, we sometimes have him wait on lines at amusement parks. I'd gotten us the alternate-access wristbands just in case and when he sighed and his body listed to one side as we stood there, I grabbed his hand and we headed over to the accessible entrance (aka the exit). 

"Why?" Max asked as we stood at the gate by ourselves.

"Because you're tired and if you have special needs you can go in this way," I explained. It's a term I've used since Max was a tot, the one most people understand, although I've never been a real fan. I mean, don't we all have special needs?! Actress Lauren Potter recently summed it up in the "Not Special Needs" video she made for World Down Syndrome Day, noting that people with Down syndrome have the same basic needs as everyone else: education, jobs, opps, friends and love. (Choice quote: "If people with Down syndrome needed to eat dinosaur eggs, that would be special!") As Max gets older, "special needs" is also seeing immature. I've been making an effort to say "disability" when labels are required or straight up say he has cerebral palsy. Still, sometimes I automatically revert to "special needs."

Turns out, Max isn't so into the term, either. 

"I don't have special needs," he informed me. 

Wow. 

Just then, the guy showed up to let us onto the ride. Once we were settled, I brought it up again. 

"Max, sometimes people use the words 'special needs' to describe a disability," I said. 

He looked perplexed.

"Max, it basically means that you have cerebral palsy," I offered.

"Yes!" he said, and we left it at that so we could relax and take in the scenery.

Max seemed to be taking this in a literal way: He doesn't have "special needs," he has "cerebral palsy." But as I sat there processing what he'd meant, I wondered if he'd been telling me he didn't want to be treated in a special way. Either way, this was another step toward owning his disability.

When we're out and Dave explains to, say, the waitress at a restaurant why Max is wailing, he'll note, "He's special needs" in front of Max, which drives me bonkers. Obviously, Dave means no harm and I am an editor/writer who cares deeply about word choice. Still, I dislike that it's describing the whole of Max versus one aspect of him ("he has special needs" isn't as encompassing). "He's disabled" seemingly has the same issue: It describes a person's entire being instead of one part of him ("he has a disability"). 

Ultimately, I am merely the parent of a person with disability, and whatever Max decides on will be fine with me. For now, he's still piecing together what it means to have CP. During the car ride home, I told Dave the story about going on the ride and again Max said, "I don't have special needs!"

I said, "I get it. You have cerebral palsy."

Max looked at me. He pointed to Ben. 

"Will he get cerebral palsy?" he asked. 

To be continued, as always. 


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