Tuesday, December 31, 2019

The Love That Max disability year in review: viral posts, mortal sins and lots of wins


In January, I pondered what to say when a stranger blesses your child with disabilitiesoutsourced parenting to Max and got seriously excited when Max opened a car door by himself for the first time.


In February, I admired parents who were building a home for their adult children with disabilities (they broke ground on December 13!) and officers who calmed a man with autism at the hospital, listened up when Max told me it's "easy" to have cerebral palsy, ranted about a person with intellectual disability denied an organ transplant and felt grateful for technology that enables Max and others with disability.


In March, a restaurant had this strong response to intolerance of people with disabilities, a trainer with autism opened a gym for people with autism and Dr. Phil caused a social media tsunami when he dismissed interabled couples on his show. I debated whether it's wrong to force a child to have fun and celebrated the texts Max started sending me and the time he took a walk around our neighborhood, alone, for the first time.


In April, I pondered whether kids who are nice to those with disabilities deserve to be called "superheroes" and celebrated the best words I ever heard at an IEP,  Also, Peppa Pig debuted a character in a wheelchair and pro wheelchair dancer Cheryl Anglelli killed it in this Dirty Dancing video.


In May, the #inaccessibility hashtag went viral, the author of Hiya Moriah shared a post on how kids can talk to children with disabilities, a viral story showed that accessibility is not the same as acceptance, I shared 30 things special needs moms do (is this you?) and Getty Images released stock images of people with disabilities in association with the National Disability Leadership Alliance.


In June, Max drove his little bro around in a bike trailer and my heart still hasn't recovered, a staffer at Universal Orlando Florida lay down next to an autistic boy to calm him and the world cheered, Max was his own best date at prom and it was awesome, an off-duty police officer murdered a nonverbal man at Costco, tragic and so troubling, and a boy down the block shot hoops with Max and it was just the best.


In July, Max brought steak sauce to campa Goodwill in Illinois tried to not pay a dozen workers with disabilities, Target announced costumes for kids in wheelchairs and a pizza place staffed by people with disabilities took off after dealing with hate.


In August, this beautiful photo celebrated babies of all kindsa school in Wisconsin got a facility dog to help students with disabilities and Max dealt with some regression.


In September, we realized that Max looks like Keanu Reeves, an autistic man used his iPad to speak at the 9/11 memorial service and I pondered what I would have missed out on in life if I'd never had a child with disabilities.


In October, I urged parents to take a selfie of themselves helping their child with disabilities, a gym cancelled a birthday party for a child with disabilities and got sued, writer/disability advocate Melissa Blake's selfies showed everyone and my look back at Halloween through the years made me realize how far Max has come.


In November, the film Intelligent Lives aired and many of learned about a Circle of SupportMax pranked his speech therapist and it was awesome and a speech therapist teaching her dog to talk won the Internet.


In December, a restaurant opened a sensory-friendly dining room, I ranted about people waiting for other people in handicap parking spots and debuted 'Twas The Night Before Christmas: Special Needs Edition and my big, handsome boy turned seventeen. SEVENTEEN!

Wishing you and your children a happy, healthy, progress-filled New Year.

xo

Ellen

Monday, December 30, 2019

This is how winter break feels for parents, in GIFs

Your child, on day one of break. Right after breakfast.

You, on day one of break. Right after breakfast. 

When your child finishes the art project you figured would take an hour—in approximately
four minutes.

When you leave your child to his own devices and you feel guilty because he played with the same toy for approximately eleventy billion hours.

When you let your children watch TV for approximately eleventy billion hours.

When you give in and let your kids have mac 'n cheese/cookies/spaghetti/Cheetos/whatever for breakfast because after a few days of winter break, you are weak. So weak. 

When you pick your partner's brain about activities and he can't come up with anything better than "Go to the mall!" either.

When the playdate gets cancelled because the other kid is sick. 

When you tell yourself that at least the iPad has educational games. (No matter that your child
is not playing any of them.)

When you start saying things like "Go have a dance contest with yourself!" out of desperation.''

When you fantasize about sitting in peace for just five minutes

When your child is about six days overdue for a nap and won't admit it.

When you feel like you're living through the longest days in the history of the world.

When your children finally go back to school.

Thursday, December 26, 2019

The Disability Blogger Weekend Link-up: holiday break reads


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: Kids with disabilities in ads really matter to kids 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.

Tuesday, December 24, 2019

From our family to yours

Monday, December 23, 2019

When Max didn't like a gift and I didn't take it personally


I've been hoarding holiday gifts for Max for a while now. They have a theme: stuff imprinted with the words "Los Angeles," the city where he'd love to live. Last evening, the first night of Chanukah, I couldn't wait to break out his first present, a water bottle.

Perhaps I was too cocky—"Max! I know you're going to like this!"—because when I pulled the bottle out of the bag for him, he gave it A Look.

"What's that?" he asked, pointing to the writing.

"It says Los Angeles," I explained.

"No it doesn't," he noted.

"Yes, it does, that's script writing," I explained.

"I don't like script!" Max said.

What?!

"But Max, it says Los Angeles," I insisted.

"No thank you!" he told me.

At this point, my choices were: Wonder where I'd gone wrong with Max that he could be so ungrateful (although at least he was polite about it!) or accept that Max sometimes has a fixed mindset about how things should and shouldn't be and let it go. It tends to take him a while to come around to new ideas and concepts, and script evidently wasn't something he'd considered before.

Friday, December 20, 2019

The Disability Blogger Weekend Linkup: The cheer is right here


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: 'Twas The Night Before Christmas: Special Needs Edition

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, December 19, 2019

Dealing with the naysayers in your child's life


This guest post is by Jane Kim. A writer and mom of a seven-year-old with autism, she works in the field of immigration and lives with family in the Philadelphia suburbs. Find Jane on Twitter @JKimRites

My friend Anne recently told me about something that happened after she gave birth to her daughter with Down syndrome. She was emotionally raw and struggling to process the impact it would have on her baby's future. Her doctor rattled off a list of “nots”: her daughter would not be able to talk, read or ride a bike. He then assured her there were jobs for “these types of kids, and with hard work and a whole lot of luck they can go on to greet at Walmart.” She felt a mix of disgust at his ignorance and determination that she would do whatever it took to prove him wrong.

I’ve heard countless stories from parents who were told all kinds of “nots” from those they trusted, during their most vulnerable times. Your child “will not/cannot/most likely won’t be able to______.” My son is on the autism spectrum and seven years ago, his developmental pediatrician told me it was likely he would never speak. I remember sobbing during that appointment, shocked by the careless manner in which she offered that statement, the bright future I had envisioned for him quickly fading away.

Today, my son is a charming, quirky and funny first grader. Thirteen years later, Anne’s daughter is on the school cross country team and shares her sass, opinions and love with anyone willing to receive it. Both her mom and I are grateful that we’re no longer in that “not-filled” period of our lives. Challenges still remain, but the future is just as it should be: not yet written and filled with hope, a place where dreams can be achieved.

Looking back, it took me a great deal of courage and a conscious commitment to think differently amidst the naysayers. Those of us who care for children with disabilities shouldn’t be subject to this crystal-ball negativity. Many kids defy these outcomes, but the emotional scars remain for their parents and caregivers. On the tougher days, I recall the “nots” and begin to question my choices, if my efforts matter and if they make a difference in my son’s life. Doctors, therapists, grandparents, teachers and school administrators need to help frame a parent’s perception of their child’s future by empowering them—and the messages they speak matter.

A couple of months ago, the institution where I work provided real inspiration for my son’s future. October was National Disability Employment Awareness Month and through employee spotlights on the company intranet, they raised awareness and further educated employees about disability. Staffers with disabilities in various positions—Physician Practice Manager, Family Relations Coordinator and Occupational Therapist—shared their unique stories discussing their strengths, challenges and words of wisdom.

The candor and celebration of their experiences were important on many levels. It told me that in a supportive environment, people are less inclined to hide or minimize their disability/disabilities. It told me that at the right workplace, there can be regular and open communication about appropriate accommodations to ensure that employees are successful in their respective positions. It told me it’s possible for my son to find and maintain fulfilling employment when it’s time for him to enter the workforce.

Being part of an organization that champions all abilities has lifted my outlook and provided me with much-needed reassurance on the tough days. Although not all of us work at a place that champions people of all abilities, it’s still possible to find ways to get the “nots” out of your head. A few things that have worked for me: for starters, there’s no need to give the naysayers an audience. Seek out those who are willing to get to know your child as an individual, and not a diagnosis. I’ve found that recommendations from others are incredibly beneficial. Ensure that those on your team know your child’s strengths, not only the challenges. Understand that your team can only perform at its best if you are an equal partner. Find others with similar experiences who can relate and offer support, real-life tips and advice. If you happen to be looking for a new job for your adult child or yourself, check out the top-scoring companies ranked on the Disability Equality Index.

There is a deck of cards by Culture Coach International that I got at work last year; one includes tips for fostering inclusion. I carry this card in my wallet. It has helped me better understand what it means to be inclusive, and has enabled me to communicate and advocate for my son more effectively. In the meantime, I’ll continue to challenge and eliminate those careless and harmful “nots.”


Wednesday, December 18, 2019

The best shoes and sneakers for kids who wear AFOs, DAFOs and SMOs


I am not a person who considers it Scrooge-like to get your kids practical stuff for the holidays. Especially when there's an abundance of cool sneakers and shoes for kids who wear AFOs, DAFOs and SMOs out there. Here's a list of ones that come recommended by parents and orthotists.


Converse Kids Chuck Taylor All Star Easy Slip
Max loves his new UCBL shoe inserts, which he's been wearing with red Chucks. They are Converse Kids Chuck Taylor All Star Easy Slip and have Velcro'd heels to easily sleep feet in and out. While they are not very supportive, they work well with shoe inserts.


New Balance
The orthotist recommended we get Max a pair of New Balance to interchange with the Chucks, since they have more support. They've actually long been our our go-to sneakers—they're super supportive and come in extra-wide sizes to fit orthotics. We usually take out the insole. If you have a Nordstrom near you, they are usually willing to order a pair in different sizes if your kid has different size feet. (Also, check out the Facebook group CHASA Shoe Exchange to find your solemate).


Billy Footwear
The hottest shoes for kids and adults who wear orthotics are from Billy. They're the brainchild of Billy Price, who became paralyzed after an accident. He used universal design to create a shoe that's fashionable and functional. The shoes have zippers that start on the sides and go around the toe, so that the upper part of the shoe opens and folds over completely and makes it easier to get the foot in. Right now the shoes are all size M, and the company notes that there is no guarantee they will fit AFOs though plenty of parents say they do, and they plan to debut one soon geared toward orthotics.


Plae Adaptive-Friendly Sneakers
Plea's Adaptive Friendly sneakers have stretch uppers, higher ankle support, a wide tongue opening and a removable insert. Also: They are just so cool.


Ikki Shoes
Ikiki shoes for toddlers are made to fit AFOs and SMOs, and right shoes and left shoes can be ordered individually. Parents say they are easy to put on, lightweight and durable.


Payless SmartFit Sneakers
For years, we used Payless SmartFit sneakers in extra-wide, taking out the insoles to fit Max's orthotics. They were a real bargain! The brick-and-mortar stores are gone but the company still sells via Amazon, here are the SmartFit shoes.



Nike Flyease
Nike Flyease unzip from the side so feet can slide right in, and come in a C width. Max has had a couple of pair, and they've been comfy and supportive.


Target Lucian Double Zip Sneakers
Heads up: Target now sells sneakers with zippers on both sides, the Lucian Double Zip Sneakers


Tsukihoshi
Tuskihoshi shoes can be a great fit for a child who wears AFOs or SMOs. They're lightweight, not bulky, machine washable and seriously stylish.


SureStep
SureStep, a company that makes AFOs, also offers sneakers for toddlers that fit orthotics. They're durable and really cute. 


Tomcat Twisters
Tomcat Twisters, designed for children and adults who wear AFOs and DAFOs, has a devoted following. This is a British company and the shoes are super quality but not cheap.


Hatchback Elites
Max also wore Hatchback Elites for years, and while they aren't the most stylish theyhave classic good looks and hinged backs to accommodate AFOs. Some insurance plans cover them, so check with yours. (Some parents report getting a prescription that will cover New Balance sneakers, too—also worth looking into.)


Skater shoes
Some parents swear by skater shoes, because they're wide. Brands include DC Kids (adult sizes also available), Osiris and Vans.

AND FYI!

Zappos' Adaptive has a section for Easy On/Off Shoes worth checking out.

If your child's foot braces are not covered or fully covered by insurance, you can apply for a CHASA Orthotic Grant.

And if you would like to donate your child's old orthotics, you can donate them directly to children in need in Uganda and Papau New Guinea, here's information on that.

Tuesday, December 17, 2019

Kids with disabilities in ads really matter to kids with disabilities


This photo was posted in a Reddit group last week with the caption "My Son Seeing Someone In His Shoes." It has since been deleted by the poster (who knows why; some users got suspicious because he tagged Target and Reddit doesn't do hashtags). Whatever! It's awesome. The adorable model is Finley Smallwood, of Eastvale, California, who has cerebral palsy and is an Instagram star.

When Max was a little boy, there were no kids who looked like him in the media. While we have a ways to go with TV and movies, I am happy that today's kids with disabilities are growing up seeing more kids like them in ads and the occasional in-store promotional poster. (You might remember the recent viral photo of a girl in a wheelchair staring at an Ulta ad of a model in a wheelchair.)  This also sends a message to others about our children: yes, they are ad-worthy. To be sure, these promos don't exist to better humanity; they are there to sell stuff. But what young children see is someone who looks like them—or in this case, uses a walker like them—and that can mean everything. 

Children with disabilities get the message that disability is something to proudly display in a giant poster, in a newspaper flyer or wherever the ad is. They get the message of inclusion—just like any other beautiful child, they deserve to be in ads. And they get the message that they matter.

Monday, December 16, 2019

The choking scare and the responsibility we parents shoulder


I took Max and Ben to a diner for dinner the other night. Sabrina was out with a friend and Dave was away on business, so it was just me and the boys. We settled into a booth and by that I mean, Max and may sat down and Ben crawled under the table to play with his cars. Max wanted to do Thanksgiving in December, so he got turkey and gravy, with a French Onion soup for starters, his fave.

While Dave still tends to help feed Max at mealtimes, I won't because Max is capable of doing it. When the soup arrived, I asked for a steak knife. After I cut up the gloppy cheese on top, Max dug in. Ben darted to another booth—the restaurant was pretty empty—and I got distracted asking him to quit jumping on the cushions. Suddenly, Max started gagging and coughing. It looked like he was choking.

I started whacking his back. "Max, are you OK?" I asked. "Tell me you're OK." If a person is able to talk when they are choking, or laugh or cry, it means the situation is mild and they should be able to clear out the blockage on their own. If not, their airway is completely blocked and you need to act quickly.

"Max! Max! Tell me you're OK!" I begged. 

Ben started crying: "Maaaaaax," he said. 

I was about to open Max's mouth to see if I could extract whatever the obstruction was when Max eked out "I'm OK!" With a few last coughs and big swallows, he calmed down. We talked more when he was able to and he said he had swallowed a big piece of cheese. Usually Max is pretty good about assessing this sort of thing, but it dawned on me that melted cheese can be deceptive—it may look mushy but there's a real danger of it getting stuck in your trachea. I know this applies to string cheese, but I'd never thought about melted cheese on soup.

I grabbed the soup bowl to make sure there were no other large chunks of cheese and Max continued to happily eat. I was shaken to the core. Parenthood is a whole lot of responsibility on your shoulders, but at times, the job of keeping Max safe weighs on me. While we are the parents of a child who is not medically fragile, it is all relative. Making sure that Max doesn't choke (cerebral palsy can cause isues with chewing and swallowing); stays well rested and gets a one-two punch of ibuprofen ASAP when he has fever (fatigue and fever can trigger seizures); takes his anti-seizure meds twice a day; doesn't tumble down stairs; and watches out for himself  and cars when he takes the occasional walk alone around our neighborhood are tremendous responsibilities. Ditto for making sure people in his life are aware of all this.

While Max's maturity has meant that he, too, can play a role in his safety (he will remind us when he needs his meds, for example), at times we have to keep an eye on him in ways that parents of young children do. Now that Max is seventeen, I sometimes forget that.

If I think too much about the care and attention Max needs, it's overwhelming. And so, as I've always done, I take life day by day. That doesn't mean I'm never pondering the future, like what sort of job might work well for Max or where he might live. It means focusing on doing the best to enable him and empower him in the moment—and feeling good about the effort, even if it isn't always a success. Sometimes, not pondering the big picture is a good thing. 

When Dave and I were catching up last night, he mentioned that when he and Max had gone out to eat that day,  Max had French onion soup again.  

"Did you feed him?" I asked Dave.

"Yeah," he said. 

For sure, spoon-feeding Max is one way to make sure he stays safe from choking. But that also impacts his independence, something Dave and I continue to navigate. Max's fondness for French onion soup isn't going away anytime soon. We'll just have to keep an eye on the cheese and keep right on taking life, day by day. 

Image: Flickr/sousvideguy

Friday, December 13, 2019

The Disability Blogger Weekend Link-up: let's toast your 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: 'Twas The Night Before Christmas: Special Needs Edition

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.

Wednesday, December 11, 2019

Good times at the pediatrician's office


Max was excited for his annual checkup at the other day because he wanted to tell our longtime pediatrician, Dr. G., about his plans to move to Los Angeles. Max sure has come a loooong way from those days he'd melt down in the waiting room.

After taking Max's vitals (he is exceptionally vital!), the nurse handed me a form about well-being that typically teens fill out on their own. After she left the room, Max and I decided to do it together. You had to reply not at all/several days/more than half the days/nearly every day to a series of problems.

Problem: Little interest or little pleasure in doing things.
Reality: It's impossible to keep Max at home on weekends—he wants to be out there constantly, "galavanting" as Dave likes to say. 
Me: "Max, do you enjoy doing different things?
Max, enthusiastically: "YEAH!"

Problem: Feeling down / depressed / hopeless
Reality: Max is one of the happier people on this planet.
Me: "Max, do you ever feel sad?"
Max: "Yes!"
Me: "When?"
Max: "Because I can't move to Los Angeles!"
He cracks up.

Problem: Troubling falling sleep / staying asleep / sleeping
Reality: Max falls asleep basically as soon as his head hits the pillow and doesn't wake up till about nine hours later.
Me: "Max, do you sleep OK?"
Max: "OHHHHHH YES!"

Problem: Poor appetite / overeating
Reality: Max is a skinny boy who counts eating among his favorite activities. 
Me: "Max, do you love to eat?"
Max: "STEAK!"

Problem: Feeling bad about yourself / feeling that you are a failure
Reality: I honestly wasn't totally sure about this one. I mean, Max has told me that he doesn't find having CP challenging. And he's generally pretty confident and not easily put off when he can't do stuff. Still, Max has an inner life I am not fully privy to.
Me: "Max, are you happy with who you are?"
Max: "Huh?"
Me: "Are you happy with being Max?"
Max: "Fireman Max! Yes!"

Problem: Do you have trouble concentrating on things such as reading the newspaper or watching television
Reality: HA HA HA HA HA. Max could sit on our couch and watch YouTube videos of fire trucks all day long.
Me: "Max, do you watch a lot of fire truck videos?"
Max: "YES!"

Problem: Moving or speaking so slowly that other people could have noticed
Reality: Um, cerebral palsy?
Skip.

Problem: Thinking that you would be better off dead / thinking that you want to hurt yourself in some way.
Reality: Um, Max? But I tried:
Me: "Max, are you happy to be alive?"
Max: "I want to live in Los Angeles!"
Skip!

We moved on to the flip side of the form, which turned out to be even more LOL-y.

"During the past 12 months, did you drink any alcohol?"
Reality: Dave gave Max a sip of beer this summer and Max was all, "Ewwwww!" 
Me: "Max, do you drink wine or beer?"
Max: [Laughs uproariously.]

"Have you smoked any marijuana or hashish?"
Reality: Max does not know what this stuff is.
Me: "Max do you do drugs?"
Max: Cocks his head to one side and gives me a look.

Now we are both cracking up. This screening test is not exactly geared toward a teen like Max, who lives a rather innocent existence. A more appropriate question for him would be: Do you ever drink milk to excess? Yes, he does.

After we finished the form and were waiting around for the doctor, I found the video of Last Christmas on YouTube. Max is obsessed with that song, which he is performing at his school's holiday show this Friday. So I put it on and we both sang along at the top of our lungs and that's exactly what we were doing when the doctor walked in.

The exam went well, making it pretty much the best doctor's appointment I'd ever been to. Probably Max, too.

Tuesday, December 10, 2019

This is seventeen


Seventeen is loving adventures, big and small—going to new restaurants, visiting new cities, seeing shows, whatever. You used to fear going to the mall, and now we can't keep you at home.

Seventeen is being responsible about doing your homework and taking your meds but not so much about going to sleep at a reasonable hour.

Seventeen is mastering your own version of the eye roll: head cocked to one side, chin out, one arm tapping a leg.

Seventeen is being a caring and doting brother, but also racing with Ben to be the first to walk in the door anytime we go somewhere together.

Seventeen is announcing "Bad driver!" when someone makes dubious moves on the road, including your own parents.

Seventeen is getting excited about school dances, programs, sports and everything social.

Seventeen is feeling firmly about moving to Los Angeles, so much so that you refuse to call your actual house your home.

Seventeen is wearing a Los Angeles baseball cap everywhere, turned to the side.

Seventeen is the freedom of being able to send text messages from your watch.


Seventeen is getting up by yourself in the morning, walking down the stairs, turning on the TV and chilling by yourself.

Seventeen is being a great reader and proud of it.

Seventeen is advocating for yourself, like when you decided a few months ago that you didn't want the knee-high orthotics, and loving the new shoe inserts.

Seventeen is telling your parents they look nice when they get dressed up but also pointing out when wear the same shirt two days in a row.

Seventeen is being obsessed with eating, especially steak. We never appreciated how cheaply we got off during your mac 'n cheese phase.

Seventeen is texting your parents when they're out to dinner to see how the food is.


Seventeen is having a conversation in the car ride with your mom about your hopes and dreams. (Especially: Los Angeles.)

Seventeen is knowing when you need a hand and asking for it.

Seventeen is making sure your sister gets out the door on time in the morning: "GO! NOW!"

Seventeen is taking walks by yourself around the neighborhood.

Seventeen is remembering stuff your mom spaced out on—say, your evening basketball event—and being pretty darn triumphant about it.


Seventeen is still loving fire stations and insisting on being called "Fireman Max" but no longer demanding that nurses at doctors' offices call you that when they summons you into the exam room.

Seventeen is insisting on going to movies by yourself although on occasion letting Daddy or me accompany you.

Seventeen is getting very excited when someone mentions London or other trips you've taken and happily talking about stuff you did there, like visiting fire stations and eating steak.

Seventeen is telling us that you want to learn to drive and we will find a way because we always do.

Seventeen is proving those gloomy, doom-y NICU doctors wrong every single day.

Seventeen is you, today. Happy Birthday to a young man full of smarts, personality, curiosity, sweetness and sunshine. We love you so, so much, Max.



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