Friday, August 17, 2018

You're cordially invited to The Disability Blogger Weekend Link-up


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 amazing thing the mom at the other table did

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, August 16, 2018

What I Did This Summer. By: A special needs mom


What I did this summer:

• Went to work
• Went to the town pool
• Washed all the pool towels and bathing suits, including the towel that was abandoned under the third row of the minivan and whose moldy odor was a total mystery ("WHAT'S THAT SMELL?!!!") until we finally discovered it three weeks later
• Called the insurance company to find out about the status of reimbursement for various therapies for my child
• Told child "No, you can't move to Disney World" approximately eleventy billion times
• Drank iced tea and even had time to add a slice of lemon!
• Got the school forms in early July and tried to ignore them
• Grumbled about having to fill out school forms
• Filled out the school forms
• Went to the beach
• Called the insurance company to ask why they had reimbursed my child's therapists instead of us, even though I had noted on the forms that the bills were paid
• Cleaned the house/shopped for groceries/did more laundry/picked up after everyone/continued to ensure our family could exist
• Went on a couple of weekend getaways
• Observed that all the other families on Facebook were going on way more exotic vacations than we were and came down with a bad case of summer vacation envy
• Called the pharmacy to ask why child's automatic renewal prescription didn't automatically renew
• Saw Incredibles 2 three times because child wanted to
• Preemptively called our district's transportation coordinator to ensure that this year's bus ride to school would not again be one hour and twenty minutes for a ride that should take maybe twenty minutes
• Ate ice-cream
• Booked various specialist appointments for the coming year
• Called the insurance company to find out why a bill sent in three months ago was never reimbursed
• Ate corn and barbecued burgers
• Enjoyed the fireflies at dusk
• Preemptively called child's bus transportation company yet again and what?! How could you not remember me? We spoke for twenty minutes a couple of weeks ago about my son's transportation needs and the fact that he had an hour and twenty minute bus ride this year and...yadayadayada
• Stress-ate ice-cream at 11:30 p.m. while trying to figure out schedule for fall therapies
• Continued to tell child that he could not move to Orlando
• Stared longingly at the lounge chair in the backyard

Wednesday, August 15, 2018

Thank you and you and you and you


Some of Facebook's flaws may have been revealed in recent months, but I'm a diehard fan girl. The community I've found there, especially on my blog page, is a regular source of guidance, inspiration, comfort and laughs, too. Same goes for this blog. So, greetings! I'm so glad you're here.

I've got community on the brain because of a podcast I recently did with Elizabeth Aquino and Jason Lehmbeck, two smart, voicey parents of children with special needs. They recently launched Who Lives Like This, which is all about caregivers of children with disabilities. Elizabeth and I know each other through the blogosphere; a gifted writer, she blogs at a moon, worn as if it had been a shell. I connected with Jason, a tech entrepreneur, through a mutual friend last year.

I swiped this photo from their podcast page to show you how cool they are. Hopefully they won't sue me.

The focus of I the episode I was on was community, but we chatted about lots of things—sibling relationships, iPad innovation and that scandal from years ago, ridiculously priced adaptive equipment, ableism and the Starbucks straw controversy. I'd be remiss if I didn't get Elizabeth a shout out for singing what could be the new anthem of parents like us everywhere.

In the course of our conversation, I mentioned the amazing feedback I got when I went on Facebook last spring and ranted about Max's hour and twenty minute bus ride to school. A bunch of other parents had experienced the same. That's where I learned that I could have a shorter bus ride written into his IEP—and that's exactly what happened. Thanks to this community, Max's mornings will be significantly improved this school year.

This is all to say: at the risk of sounding like a cheesy greeting card, I so appreciate you. Er, except the ones who leave rude comments. I am grateful for your insights, the info you share and your cyber shoulders to cry on. I am heartened that we are spreading the good word about our children in every form of social media, and changing perceptions every day. And I am so, so grateful for the reality checks and support that enable us to be stronger parents and to better enable our children. Rock on, Elizabeth and Jason.

Listen to episodes of Who Lives Like This here.

Tuesday, August 14, 2018

The amazing thing the mom at the other table did


This weekend, we went out for ice-cream to celebrate Max's homecoming from camp. (As if we needed an excuse for ice-cream.) I figured Max would get his usual, chocolate and vanilla swirl, but he wanted cookie dough, too—clear proof that camp had broadened his perspective and letting him miss summer school was worth it. 

There was a family with two little boys seated at the table next to us. Suddenly, I heard the mom say, "Everyone talks in their own unique way." Instantly, I knew what was going on: one of her boys had asked about Max's speech.

I still feel a twinge in my heart when I overhear anyone talking about Max. Part of me wishes that his differences did not make him the subject of conversation. But part of me also understands that when children are around people with disabilities, the encounters can serve as springboards for discussion. This time, Max was the springboard. He is not yet aware of the stares, whispers or remarks about him. That's another double-edged sword: If Max did realize it, then he could be his own advocate...but he'd know. For now, I'm the one who notices.

As the parent of a boy with disabilities, I ache for kids and adults to see what I do: my child, i.e., a person. It's not unexpected that the disabilities are what people tend to notice first. But sometimes, they are all that people can see.

Parents can play a major role in shaping children's views of those with disabilities. Often, I hear ones go "Shhhh!" when their children ask about Max. Not this mom. I tried to hear what else she said but couldn't. A few minutes later, she said hi to Ben and Max. Max said hi back and Ben ducked his head (he's shy). When we left, I flashed her a smile. "Enjoy your beautiful family!" I said. "Same to you!" she answered.

It was the most simple thing in the world. This woman's child asked about Max, and she gave him the very answer I give children when they've asked about Max: Everyone talks in their own way.

Everyone moves in their own way, thinks in their own way, behaves in their own way. Sometimes people need help getting their words out or getting around. We all share basic needs: to be loved, give love and feel respected.

While I'd like to think this mom and son's discussion will continue, it was so heartening to hear just that one sentence.

Monday, August 13, 2018

Is it teen 'tude? Disability? Wha?


"I have a video he made for you but it's mostly him telling his counselor he hates him because he told him he wasn't going to family camp," the camp director wrote me last week. Evidently, Max wasn't happy that following his stint at camp, he wouldn't be attending the five-day family camp that started a few days later. We'd been to it a few times, but couldn't make it this year.

I immediately apologized to her for his obnoxiousness, and explained that when he's said that at home, we tell him that saying that makes people feel bad. Her response: "Don't worry! When he tells us we tell him we love him."

A teen telling his mom "I hate you!" is nothing new. I've got two teens throwing that shade on me. But Max has said it to a couple of his therapists when he wasn't in the mood for therapy. And then he said it to a counselor he actually really likes. And I've had that same conversation with him, but I'm not sure if he's just ignoring me or he doesn't get it.

In general, Max's has a good emotional IQ—he's always readily sensed when Dave or I are upset, and he's eager to make people happy. But his sense of empathy is still coming along, along with his internal filter of what's OK to say and what's not. That has to do with his level of cognition, I think. Yet I'm not sure—maybe he's just being an obnoxious teen.

I hate blaming stuff on his intellectual disability when it could just be a personality thing. Sabrina, who's 13, may not tell people who aren't me that she hates them, but that doesn't mean another teen who's typically developing wouldn't. Either way, we'll keep calling Max on it.

Max came home from camp yesterday and we went out to dinner. He is hell bent on going to Disney World, and he asked Dave to help him look up flights in September. That's not going to happen, but Dave let him scroll through upcoming flights anyway.

"Max, you have school!" Dave reminded him.

"I hate you!" Max said.

"Max, that isn't OK to say, Daddy loves you," I said.

"Guess you'll be going to Disney by yourself!" Dave answered.

"You won't be going anywhere if you keep saying that!" I said.

Max just sort of smirked.

I. Wonder.

Friday, August 10, 2018

The Disability Blogger Weekend Link-up: sharing for the win!


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: What it's like to star in a Target ad: scoop from the mom of a kid 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.

Wednesday, August 8, 2018

What it's like to star in a Target ad: scoop from the mom of a child with disabilities


This guest post is from longtime online friend Natalie Hammer Noblitt, a mom of three based in Los Angeles's San Fernando Valley. Her oldest, 10-year-old Nicolas, is "positive, friendly and curious" she says. He's also one of the first children with disabilities—Nic has cerebral palsy—to star in Target back-to-school ads, currently running on major TV networks, cable and at movie theaters, too. Here, Natalie gives the backstory.

Five years ago, we moved from Chicago to L.A. for my husband's job, and I discovered that there are quite a few families here who have kids in the entertainment business. I joked about getting the kids into modeling and acting. Nic has always enjoyed being in front of the camera—he's taken dance, baseball and swim therapy at California State University, where he’d often get chosen or volunteer to speak about his experiences. He became very comfortable using a microphone and speaking to the group.

Nic with siblings Eliza, 5, and Nathaniel, 6

Inclusion has been our family motto for a long time. One of the reasons we were excited about moving to California is the state’s reputation for being very accessible to wheelchair users, something we struggled with as Nicolas neared school age in Illinois. But accessible doesn’t always mean inclusive. We’ve experienced many challenges getting Nic the support he needed at a general education public school. His neighborhood school told us up front they’d never dealt with a child in a wheelchair or walker before. Other families at school sometimes didn’t understand why he was mainstream and wondered if the expense of his supportive services him might take away from their children’s resources. Even in a very open minded and well-funded school, misconceptions persisted.

We wanted this for Nic—and other children like him—because we haven't seen many images in the media that represented them. That has begun to change in the last couple of years, but when Nic was small we would get so excited any time we saw a child with a wheelchair in a commercial or on a TV show. As a family we loved the idea of letting Nic pursue his talents, and also show others that kids with disabilities want to be social and involved. We knew if he could be embraced by the media it might also help other kids feel they are visible, too. Social challenges also exist when your child is the only one at his school with a visible disability.

We started asking around about agencies Although there are agencies in LA that are known for working with kids with disabilities, we ended up approaching DDO Kids because we’d heard great things about their agents from other families. A traditional kids talent agency seemed to make sense so Nic would be considered for roles that both called for children with disabilities and ones who weren't asking for those characteristics. I’m not aware of other children who have a visible disability among the roster of children they represent.

The agency signed Nic in the summer of 2017. Next we got headshots taken, signed up for all the casting sites where actors and models need to be listed (which all require monthly or yearly fees), and got a work permit from the state of California. Grades and attendance are important factors in getting approved for a minor’s work permit. When you are a child with complex medical issues — needing to take time off to see specialists and have procedures done during the school year — your attendance doesn’t always look perfect. We had to work with the permitting agency and show them Nic's IEP before we could get his work permit approved. (We go through that process again every six months to keep it legal for him to work.) These are some of his professional shots, taken by photographer Kendra Kabasele.




Nic started auditioning for commercial and theatrical parts right away. He enrolled in acting classes for children wanting to act in commercials, TV and movies. He had a blast and wanted to keep going, so we felt we were on the right path. The classes led to meeting his manager, April Baker of Stagecoach Entertainment, who joined his agents as part of his representation. She's helped us build relationships in the industry, and also happens to be the manager of one of the other kids in the Target commercial.

The first commercial Nic booked was a Burger King spot that ran in Mexico and Turkey. At the beginning of 2018, he booked a role in a print campaign for a major sports brand (yet we still haven’t seen the results of that work). Later he landed a Nickelodeon summer promotion role, but the final cuts only show him very briefly. DDO Kids submits him for all kinds of roles appropriate for his age. He’s auditioned for TV shows, movies, commercials, print jobs and online content.

You never know how a project is going to turn out, or if you child will be cut altogether, so we all have to be patient and not be disappointed if something doesn’t turn out the way we think. We’ve explained to Nic that while he can have a lot of fun doing these auditions and projects, it is a job and professionalism and hard work are expected if you want to keep getting roles. It’s taught him about saving money, paying taxes and a lot of other really practical skills that will be good for him later in life. (Because we live in California, child actors working in the industry are subject to special laws that protect kids on the amount they can work and where the money goes—money put into a special account can't be accessed by anyone except the child when they turn 18.) Nic also really enjoys seeing all the behind the scenes work that goes into putting together a commercial or film project.

We’re a Target household, and Nic’s entire outfit the days he auditioned for Target came from the store. We were so excited when we got the call from his agent that he got the gig—he popped a wheelie in his wheelchair! He’d been doing this for a year and sometimes auditioned for projects 5-7 times a week. I reminded him how much work he’d put in to get to this point.

The crew and director were all so accommodating and kind when we filmed at the end of June. The director wanted to take Nic’s wheelchair use into consideration: He’d have Nic show how fast he could get from one point to another, and learned some of the nuances of wheelchair use. He realized Nic needed to take time to put on his wheelchair brakes if they wanted him to stay still. Nic was proud to show off his speed and spinning ability. He was supported and cheered on for motivation just like all the other kids were. The two outfits Nic wore in the spot were tailored to fit him just right. I went out and bought them at the store’s as soon as they were in stock because they had become so meaningful to us.


Nic's favorite thing on set was getting to meet the other child actors—and of course the food from craft services. Who doesn’t love a good buffet and plentiful snacks?! I really enjoyed meeting the parents on set or at auditions, sharing tips and just connecting.

Nic and friends on the Target ad set

Being the parent of a child with a disability can be isolating, but I’ve experienced so many warm, open parents of other child actors. We’ve connected on social media and everyone is so supportive. Still, we’ve also gotten some reminders about why it’s important to show that kids with disabilities can do this. Some people have made it clear they think the commercial was a “pity hire,” or questioned Nic’s ability to perform and memorize lines. That’s truly not the case.

Nic works very memorizing lines when needed and has learned to be incredibly professional. He goes in to all the auditions by himself, without my help, answers questions from the casting directors and has a real sense of why he wants to do this. Our family juggles a lot to make the auditions happens, and I help promote him online because many casting directors now want to see kids with a social media following, or use it as a visual resume to see what kid actors do in their free time.

We will only work with projects that we feel have the right message and motivation. And we love to see directors putting disability-specific roles into projects to make the cast better represent all families. Another cool thing is Nic has inspired his younger brother and sister to try acting. We’ll see if his siblings enjoy it as much as he does!

Nic first saw the Target commercial at the end of July, when we were visiting with my sister in Colorado. He was so excited. "It turned out a lot cooler than I imagined," he said.

I've asked Nic what he enjoyed about the experience. "It's very fun and exciting to be on TV and know that people might recognize me," he said. "Even if you look different than everybody else, it's good for all those different types of people to be seen on TV. If people see kids in wheelchairs it might be good for them. Sometimes I know kids make fun of others who are different."

Yesterday we had a meeting with Nic's agents and without my asking him to, he thanked them for helping him get some really fun jobs. They asked how he thought he looked in the Target commercial. He said, "I think I did awesome."

Images of Nicolas alone and with siblings by Kendra Kabasele

Tuesday, August 7, 2018

Flowers that make you really happy


There is a hoya plant on a wooden stand in my room that's pretty ordinary looking for most of the year, with medium-sized green leaves. Then a magenta shoot will suddenly appear at the tip of a leaf, and a week or so later a single flower blooms. It is always glorious, with pink star-shaped flowers that resemble a burst of fireworks.

The bloom only sticks around for a week and a half before it falls apart, but it blisses me out whenever I lay eyes on it. This year, I got to enjoy it for two whole days until I came home from work and pieces were everywhere, likely the handiwork of Ben.

My wedding bouquet had chocolate roses. Other flower faves: ranunculus, Gerbera daisies, blue hydrangea and the $3.99 bunches of alstroemeria from Trader Joe's that come in gorgeous colors and last for two whole weeks. I got into the habit of buying them after Max was born and I needed a pick-me-up.

Thanks, TJ's!

Unlike my no-frills mom, who has always been all "Oh, please don't waste your money on flowers for Mother's Day!" I love me a nice bouquet any time of the year. Given my $3.99 Trader Joe's fixation, I'm not very high maintenance. What are your faves?

Monday, August 6, 2018

How to enjoy life: lessons from a toddler


Ben likes those cornhole toss games—the ones where you throw a beanbag throw a hole in a tilted board. But he's not just interested in getting the bag in; he wants to know where it goes. Whenever we come upon one of these games, he sticks his little face right in the hole to check out what's below.

Toddlers can run you ragged. But they also have a way of making you stop and marvel at rocks. Or wonder at blinking red stop lights. Or find new delight in a boat ride. Or get seriously gleeful about singing the ABC's at the top of your lungs in the car. I'd forgotten this about little kids. Ben's been regularly reminding us.

"LOOKIT! A helicopter!" he'll exclaim, and we all stop, stare and laugh. 

Max didn't go through this phase. I think he was so focused on the big physical movements—crawling, taking steps, using his hands to pick up things—that he didn't much notice the small things. We were similarly focused on him achieving the big things, and we didn't take time to savor, either. Some part of me is probably making up for lost time. 

Ben's not much into being still these days, but he loves having his feet rubbed. If he's upset, all I have to do is take off his shoe and massage a foot. Automatically, his thumb goes into his mouth and he's pacified. There are times when I'm not doing anything except at all sitting on the couch and rubbing his foot, and it's kind of great. I'm not much good at slowing down. 

Now we just need to teach him how to give a good foot rub. 

Friday, August 3, 2018

The Disability Blogger Weekend Link-up awaits you


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: Would you consider divorce to help your child with disabilities? Some couples are

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, August 2, 2018

One day you might find the Lightning McQueen sneakers


When people who don't know our family see me with Ben, they sometimes tell me to enjoy his toddlerhood because the years fly by. Oh, I know. Some days, I can't believe I have two teens. And yet, the early years with Max actually didn't zoom by—they seemed to pass in slow motion, because I was so focused on the lack of progress.

I was thinking about this because I cleaned out Max's closet last week and found his old Lightning McQueen sneakers. Although I didn’t remember saving them for posterity, I did recall mourning that he was about to outgrow them when he turned 11. There they were, glorious red relics of his McQueen phase. Almost worthy of The Smithsonian. It didn't seem that long ago that he was loving them.

When you have a child with disabilities, the infancy and toddler years can be particularly anxiety-ridden. You are acutely aware that your child likely won't hit the typical milestones on time, but you can't stop yourself from wondering when they will happen...if ever. When would he sit, unsupported? When would he be able to crawl? Pull to stand? Take a step? Babble? Pick up a toy? Color with a crayon? Understand letters and numbers? Form words? Form sentences? Toilet train?

When you're so focused on reaching a goal, the journey there may seem to take forever, especially when doctors have told you dire things about your child.

Would he? Would he? Would he? Would he?

Whenwhenwhenwhenwhen?

And then, suddenly, you have a 15-year-old and one day you find his Lightning McQueen sneakers in the closet and it won't seem all that long ago that he was going through his Cars 2 obsession. Or his car wash phase. Or his purple phase. Or the spaghetti one. Or any of them. It won't feel that long ago that he was zooming around your house in his walker on wheels or taking to the street in the last walker he had before he took his first steps alone. You can still vividly picture him in his room, tentatively leaving your arms to totter into your husband's, at age 3. You will remember his fascination with chocolate pudding, pushing him on the swing in the park and the glee on his face, when he learned to say "Ohmmmy," the way he looked in his velvet blue sailor suit someone got him as a gift when he was born and how the craniosacral therapist you took him to see at age two months old held him in her arms and called him a "little package" because he was so chubby-sweet.

So many memories will flood your head as you sit there on the floor of your child's room, holding those sneakers close to your chest and feeling all the feels. And you will be sad that his childhood passed so fast, even though you know very well it felt like just the opposite at the time. But now he is bona fide teen with all that teen spirit and 'tude and you wouldn't be surprised if he returned from camp as tall as you are.

And while you know there is nothing that could have prevented all that anxiety and worry back then, you will wish that you could go back to your younger mother self and tell her to cherish the time. And maybe that would have sounded like crazy talk to you then because as adorable as your child may have been, the freakouts about the future and the juggling of the therapies and the medical appointments and dealing with the sensory meltdowns and battling the insurance company and the sadness and the grief and the why-him and the why-us hardly seemed like anything to cherish.

But I would tell my younger mother self—and I am telling you—to find a way to cherish and adore. To block all the worries out of your head when you're playing with your child or enjoying a walk or doing whatever family thing. To try so hard, as much as you can, to appreciate the beautiful child in front of you. To forget about what he or she isn't. To cnsider what he or she is.

I can't tell you what the future will hold or what your child will be capable of or answer any of those whens, but I'll bet that someday you will be going through your grown child's closet and you will find an old pair of sneakers or an old sweatshirt or an old toy he used for therapy, and you will desperately wish you had cherished more.

Wednesday, August 1, 2018

9 amazing things about this photo


The other day I got this photo of Max at camp, and it gave me all the feels.

Because Max is away at sleepaway camp, once again, and loving his independence.

Because he looks so, so happy.

Because he is playing with a fellow camper, the two of them clearly connecting.

Because he seems totally and utterly immersed in the activity.

Because, OMG OMG, he is grasping a ball with both hands and raising his arms over his head, not movements that come easily to him—but that look effortless here.

Because he is also balancing so well.

Because he looks like any teen boy at any teen camp having a good time. And I’m so grateful to have found a camp that treats him like any teen boy who deserves to have a good time.

Because after a hiatus, he is back to being his Fireman Max self, complete with hat, and I appreciate that he chooses to ID in that distinctive way. (Also: #careergoals.) The other night, I emailed with the mom of the young woman in the photo to get their permission to share it. At first, I mentioned I was Max's mom. And then, it dawned on her: "Is your son Fireman Max?"

Because I miss this boy so much, but he does not seem to be missing us at all. Parents? What parents?

Monday, July 30, 2018

Would you consider a divorce to help your child with disabilities? Some couples are


It's commonly thought that parents of children with disabilities are at higher risk for divorce. One study from 2015 found, however, that parents of kids with developmental disabilities were no more likely to split up than other moms and dads, especially as they had more children. But now there's a troubling new divorce reality: Some couples are considering breakups solely so their children with disability can get benefits.

Expenses for caring for a child with disabilities can be high, yet if a family earns too much, they are ineligible for Medicaid benefits to help pay for care. It's a different story for a single parent, who would report far less earnings. An article in the Dallas News featured interviews with several couples in Texas. One set of parents, who have a daughter with cerebral palsy, had considered divorcing but decided against it for religious reasons. Another couple, married for nine years, had gone public with the news that they were considering divorce so their six-year-old with a genetic disorder would qualify for Medicaid. A third couple ditched Texas and moved to Arizona to get benefits for their son.

It seems that, unofficially, caseworkers occasionally recommend divorce as a way to get benefits. The article notes that while it isn't legal to file for divorce under the pretense of a spousal conflict when what you really need is benefits, Texas has no record of prosecuting these cases. Meanwhile, Medicaid in Texas is stretched tight, with lists for equipment, home care and other services running as long as 93,000 names.

I doubt this phenomenon is limited to Texas. While I don't know of parents of children with disabilities who've divorced for this reason, I do know of families who have moved to other states so they could get better benefits.

What this points to is failure at the state and federal level to provide for the needs and sustenance of children with disabilities. The cuts to Medicaid in the proposed 2019 budget could make the situation even more dire. Adults with disabilities face additional challenges; three states—Kentucky, Indiana and Arkansas—now have waivers with work requirements for Medicaid recipients, which can pose a tremendous obstacle.

To be sure, the stress of caring for a child with disabilities can strain a marriage. But the stress of dealing with a government that doesn't help—and not being able to give your child what they need and deserve—is even worse. While it's awful to think that couples would go to the length of legally divorcing to resolve their benefits situation, it points to a basic truth of being a parent of a child with disabilities: We try to do whatever is within our powers to help our children, and enable our families to exist.

For more info

Here's a look at Medicaid requirements state by state

A good piece on the issues with block grants for people with disabilities

Want to contact your elected officials? Click here.

Where's my Moscato and other important things in life


A year ago, the impossible happened: I went on a girls' getaway with my two best friends. We were all "Hey, let's do it next year!" This weekend, the impossible repeated itself: We managed to go away together again, and once more I felt like someone hit my reset button. 

We were in Delaware's Brandywine Valley, a historic area filled with mansions, museums, wineries and great restaurants. The DuPont family settled here in the early 19th century, opening the gun powder company that would lead to their fortune. We stayed at the beautiful DuPont hotel. We wondered why we are not DuPonts. 

My friend Wendy reminded me that someday I am going to miss having Ben crash in our bed, but I'll just say I did not miss having someone kicking me in the middle of the night.  

Scandal occurred during high tea (Wendy's on the left, Hedy's in the middle), when I accidentally ate one of Wendy's scones.

We went to the spectacular...

...Longwood Gardens...

...and I could not stop...

...taking pictures of flowers.  

We saw a show there at night, Music Man, followed by a fountain display. 

We toured the Winterthur mansion mansion and wondered what you'd do if you had 175 rooms in your house. 

We wondered why we did not have a small room to hold all our candlesticks and candelabras.

I actually had time to stand somewhere and just look up.

We did did a wine tasting, then hit another winery and had some more. I like sweet—Moscato's my fave. You?

We toured the Nemours mansion...

...(a mere 77 rooms)...

...and gaped at this view. #notapostcard

We got spa treatments. We played mini golf. We checked out the Wilmington Riverfront and a crafts fair. We learned fun facts!

Yes, I missed the kids. I got a video from Max at camp and one of Ben saying "I love you, Mommy" and I could not stop watching them. But I so needed this time to relax, enjoy, wander, wonder, reboot and not pick up anyone's towels or tackle any of the kajillion chores or to-dos on my list. 

I know getaways aren't easy to plan. But if you haven't done anything like this in a while or ever, DO IT, in whatever way you can make it happen. You deserve it.  

Friday, July 27, 2018

The Disability Blogger Weekend Link-up: your weekly read-a-thon


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: Be yourself, everyone else is taken

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, July 25, 2018

Treatments for children with cerebral palsy: Sometimes you win, sometimes...


Next month, it will be nine years since Max got his stem cell infusion (there he is at 6, above). And it will be one year since Max had surgeries to straighten his right foot and reduce the flow of saliva. We are not sure the stem cell transplant was a success, but we're glad we did it. We know for a fact that the surgery to control drool was a fail, and I have some guilt about having gone through with it.

We knew last year that we needed to do something about Max's right foot, which was turning in. A surgery called Selective Percutaneous Myofascial Lengthening (SPML) can help by basically releasing tight tendons. During a consultation, the doctor recommended a colleague who does a procedure called a tympanic neurectomy; it involves severing nerves that feed into the salivary gland, which would be accessed through Max's ears. It could be done right after the foot surgery, so Max would only go under anesthesia once. The doctor said that while he'd mostly operated on younger patients, he thought Max would get good results, and there were small studies that showed it could be effective. I checked in with Max's other doctors, who thought the surgery was worth a try.

Something weird happened with the saliva surgery: the doctor came into the waiting room and told us everything was fine, but he had not been able to find one of the nerves he needed to sever. Yes, could not find. He said it could have melded to the bone. Otherwise, Max was doing well. He'd sustained a small puncture in his ear drum, but it would heal, he reassured us (and it did). He offered to revisit the surgery, but we never did. We weren't game to have Max go under anesthesia and let the doctor invade his ears and glands for a procedure that could very well fail again.

Dave and I had known about behind-the-ear patches, scopolamine, that could help. They're the same ones used to treat sea sickness; one of their side effects is that they dry up your mouth. But we'd thought it would be for the best if we could find a permanent way to alleviate the drooling, why we went for the surgery.

The patches are doing their job—not completely, but enough. Still, I have a guilt hangover that the surgery didn't work, and that we put Max through an unnecessary procedure. The drooling doesn't bother him—he doesn't much notice it—but it's going to become more an issue when he gets into the work world. Already, it's one of the things that makes other people stare although he doesn't notice that, either.

Being the parent of a child with disabilities means shouldering heavy responsibilities, including making medical decisions for your child. We've always been of the mindset that if it couldn't hurt and it might help, we'd try it, and we forged ahead in that same spirit. For the first time in my life, though, I've felt dubious about a decision.

I don't feel that way at all about Max's stem cell therapy. We had the cells, which we'd banked at birth just in case. The procedure, done at Duke University by the wonderful Joanne Kurtzberg, went seamlessly. We didn't see any major changes in Max afterward, but he just kept progressing. We will never know how those stem cells helped him, if any, although a couple of promising studies have subsequently emerged, including one last year that showed brain connectivity and motor function improved in children with CP one year after a stem cell infusion.

I guess that's the way it goes. You use your best judgment. You hope you are doing right by your child. But you won't always be so sure.

Ice-cube painting and other summer fun for kids with disabilities


Want your children to have fun this summer and work on their fine-motor skills, while they're at it? Sure you do! These five ideas I've shared before on the blog, courtesy of Southern California OT Abby Brayton-Chung, are so enjoyable kids will have no clue they're therapeutic, too.  

Paint with ice cubes. Mix watercolor paint with water, fill an ice-cube tray, freeze overnight, and voila, ice-cube paints—great for grasping and sensory exploration. Run them over paper or fabric.


Play with wet sponges. Set out a bucket of water and some oversize sponges. Done! Kids can squeeze water out, throw them at a target, or walk barefoot on a bunch you've laid out in a path (a good way to work on balance, too).  


Toss around pool toys. Water makes it so much easier for children to move their arms and legs. Big pool, kiddie pool, doesn't matter! Hold a pool noodle or ball away from your child and encourage them to reach out and grab it. Play catch. Encourage them to dunk the object underwater, then let it pop up.  


Build a sandcastle. The classic! Bring along plastic measuring cups with big handles and spoons so it'll be easy for children to scoop up sand. Search for seashells and rocks they can pick up to decorate their design. If you're not in a beach area, any container that holds sand can be used to build castles right in your backyard.


Squeeze it. Condiment containers from the dollar store are excellent for squeezing and spraying word. It helps with hand strength and coordination, as well as visual motor skills if you aim for a target (or a person)! Try using them for creating sandcastles too.

Images: Flickr/hartwhereluv2photo20, tomo_moko, mayorgreg

Tuesday, July 24, 2018

Profile of a toddler


Name: Ben, age 2 years and 9 months

Also goes by: Benny, Benjy, Mushy, Yummy Boy, "STOPPPPPP OR YOU'LL GET HURT!!!"

Favorite activities: Playing with toy trains and trucks, flushing the toilet, not eating vegetables, driving through tunnels in our minivan, locking the bathroom door from the inside, playing with sand, playing with the water faucet, pushing his ride-on car around the neighborhood instead of actually riding in it, throwing anything he can get his hands on over the railing of our porch, not napping, riding his backyard roller coaster, leaving trails of graham cracker crumbs.

Favorite book: All the train books


Favorite foods: Bananas, pizza, broccoli, crackers, peas, cookies, ice-cream, chocolate and everything else that has lots of sugar

Favorite drink: "A smoothme"

Notable talents: Saying the ABCs, counting to 10, knowing exactly when Mommy could use a kiss (all the time), giving the side-eye



Especially awesome stuff he says: "lookit!" (as in, "Lookit! Bug!"); "onish" (ocean/lotion); "oh my gosh!"; "Sorry, Charlie"; "hold you!" (he means, "hold me"); "8:40!" (whenever you ask him what time it is).

Favorite drink: Milk. Warm, not cold. Shaken, not stirred.

Favorite place to be: The playground or our bed at 2:00 a.m.


Most puzzling thing he says: "I like soda!" (He's never had it.)

Favorite song: "Twinkle, Twinkle Little Star" sung at the top of his lungs

Favorite TV show: Sesame Street or any football game

Particularly interesting habit: Randomly starting to dance, like when he's sitting at breakfast and eating pancakes.


Worst habit: See: "Our bed at 2:00 a.m."

Other worst habit: Gleefully swiping piles of papers off counters. Although he always says "Sorry!" first before he does it. 

Best accessory: Sun hat


Favorite way to chill: Foot rub

Celeb he's obsessed with: Cookie Monster

Most likely to grow up to be: An engineer—he's fascinated by how toys work. Or a lawyer, as he's always negotiating ("Two more minutes!").

Monday, July 23, 2018

Be yourself, everyone else is taken


"Be yourself, everyone else is already taken," Oscar Wilde once said. I heard during a performance of Kinky Boots I recently saw on Broadway. The show was all sorts of memorable, but that quote stood out. Not long before, I'd seen Won't You Be My Neighbor?—the documentary about Mr. Rogers, and I had individuality on the brain. 

Max started wearing his Fireman Max firefighter again. We're not sure why he'd stopped, but we think he got back into it because he was going to camp and wanted to make a statement. I got this pic of him yesterday and there he was in all his red hat glory, painting.

Max has no qualms about being a 15-year-old who walks around in a plastic firefighter hat that says "Hello, my name is Fireman Max." It does draw attention to him, although even when he is not wearing it, people stare. Little kids sometimes ask "Why can't he talk?" and "Why is he drooling"? I usually tell them, "He does talk—he is talking in his own way" and "Because sometimes his mouth doesn't swallow fast enough." m

Max's physical and cognitive differences are a part of who he is, not all of him, although sometimes they are all anyone can see. Max could care less, partially because he is not aware of the stares, and partially because he doesn't see himself as very different from others. He is content with who he is.

"It's you I like" is Mr. Rogers' theme song. The documentary had a clip of him singing it to Jeff Erlanger, a boy in a wheelchair, and I sort of lost it. I wasn't sad—I just ached. Ached for people to be more welcoming to our children with disabilities and treat them less like wholly other human beings. It starts with parents talking with their children—encouraging them to say hello, discussing their questions, explaining what's more alike than different (see: How parents can talk to kids about ones with special needs).

Maybe it's hard for people who don't have loved ones with disabilities to understand, but I don't wish for a different Max. I wish for people to respect, embrace and appreciate him for who he is. All of him.

It's you I like
It's not the things you wear
It's not the way you do your hair
But it's you I like
The way you are right now
The way deep down inside you
Not the things that you
Not your toys—
They're just beside you.

But it's you I like
Every part of you
Your skin, your eyes, your feelings
Whether old or new
I hope that you'll remember
Even when you're feeling blue
That it's you I like
It's you yourself
It's you, it's you I like



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