Friday, July 31, 2015

The Special Needs Blogger Weekend Link-up: Ready!

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: Loving the little things: the gift Max has

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, July 30, 2015

5 great yoga poses for kids with special needs

This guest post is from a former colleague, Jensen Wheeler Wolfe, a certified yoga instructor in New York City. Jensen is the creator and owner of The Little Yoga Mat, a compact, eco-friendly mat for kids under age 4—used by, among others, Memorial Sloan Kettering Cancer Center in their children's ward. Jensen's a lovely, smart lady who has a lot of great insights into yoga, including poses that can benefit kids with special needs. Max is a fan—he's done yoga at school for years. Check out her suggestions:

Children's yoga is a growing trend worldwide. Yoga is beneficial for all kids, but has enormous therapeutic benefits for special needs children. 
For example, a 2012 New York University study at an elementary school in the Bronx compared two groups of autistic kids for sixteen weeks. One group did a daily 17-minute yoga program, the other group didn’t. The students who did yoga displayed a reduction in aggressive behavior, social withdrawal and hyperactivity—likely because the activity played to the strengths of kids with autism while also reducing stress. Said study leader Kristie Patten Koenig, NYU associate professor of occupational therapy, “Anxiety can fuel negative behavior, and a yoga program gives them a strategy to cope with it.”

For kids with physical disabilities, yoga can encourage stretching, posture and body awareness. Motor skills can improve. Most kids love yoga because it's fun and non-competitive. For all children, it can help with focus, listening skills, confidence and peace of mind. Moms love it because kids get calm and are less reactive. 

Try any of these poses with your child, gradually evolving into the full sequence of five. Yoga can be done anywhere but it helps to have a quiet space and a mat. Wear comfortable clothes, no socks. Gently talk your child through each pose and if necessary guide their body to the position—or stand behind them, holding their hips for support as together you go through the motion. The sequence below works in order, but after a few sessions kids can feel free to mix it up. Om on!

Mountain pose
Stand tall and straight like a mountain. Press your feet into the earth and your palms in front of your chest. Take five deep breaths through your nose. Feel your mountain power and strength!

Singing star pose
Create a star with your body by separating your feet as wide as you can and stretch your arms out. Sing or hum one stanza of “Twinkle Twinkle Little Star” while slowly rocking back and forth from one foot to the other. One foot may lift off the floor. Keep the arms wide for balance. Imagine you are up in the night sky dancing with your star friends. 

Butterfly pose
Sit on your mat and put the soles of your feet together, knees wide. Hold your toes and gently flap your knees like butterfly wings. Can you touch your nose to your toes?

Kissy knees pose
Sit on your mat with legs out front, hands next to you. Bend knees slightly and bend forward kissing each kneecap a few times.

Resting pose
Lie on your back so your whole body is resting on the mat. Now tighten up your entire body including your face and make your body as tense as possible. Hold for a few seconds. Release with an exhale. Relax, close your eyes and rest for a few minutes. 

Jensen's got a Little Yoga Mat Kickstarter going on; she's raised close to $20,000 so far to create The Little Yoga Tree Mat for kids ages five to ten, and plans to donate half of the first production run to children's hospitals because she is awesome that way. She hopes to hit her goal of $35,000 by August 7. 

Image: Flickr/Pioneer Library System 

Wednesday, July 29, 2015

A boy who happens to have cerebral palsy does a triathlon: the viral video

Bailey Matthews, an 8-year-old from Nottinghamshire, England, completed his first triathlon this weekend. Check out the video, which is going viral worldwide:


Oh, how I love that look of pure ebullience on Bailey's face as he nears the finish line. As the parent of a child with cerebral palsy, I appreciate the effort that went into this triumph. Mostly, though, I am impressed with Bailey's athleticism; he completed a 100-meter swim, 4,000 meter bike ride and 1,300 meter run. How many of us could pull that off?! So it makes me wince when I see people largely focused on the idea of Bailey completing a triathlon despite his disability.

Bailey's prowess is impressive, period; same goes for athletes competing in the 2015 Special Olympic World Games. Their physical and mental strength is something to celebrate, but that wasn't the angle some of the news coverage took with Bailey. "This story will melt your heart," read the blurb on YouTube from BBC News. Bailey "shows bravery," proclaimed a BBC headline. I won't even get into the unfortunate British way of referring to someone with CP as a "cerebral palsy sufferer."

Bailey isn't brave—he did what he set out do do. That's known as "determination" and "drive." Calling his accomplishment heartwarming or courageous (typically used to define doing something scary) detracts from this boy's athletic abilities.

As Bailey's father, Jonathan (himself a triathlete) told the Yorkshire Post, "The majority of what he does is self-propelled. He sets his own goals when he is swimming and says, 'I am going to do x amount of meters today.'" Said his mother, Julie, "We knew he would do it but I didn't expect the reaction from everyone else. The difficult thing is that for us it is normal. We know how amazing he is."

Tuesday, July 28, 2015

Loving the little things: the gift Max has

Max stood on the train platform this weekend, eyes fixated on the horizon as a train approached. He had a gigantic smile on his face as it pulled into the station. Later, I shared a photo on Facebook. "I love how he loves life," someone commented. That's it exactly: Max has this unbridled joy for things big and small.

Given that events like going on a Disney Cruise or riding a fire truck to your birthday party don't exactly happen every day, it's mostly the little pleasures he relishes, and he has lots of them.

He shouts "YEAH!" when I agree to drive him to the fire station for a visit.

He excitedly points when he finds mac 'n cheese on a restaurant menu.

His face lights up when we're driving around and we see a sign with his name—say, "Max speed 55."

He giggles in anticipation when he sees a guest pulling up to our house for a visit.

He claps along delightedly to music he likes.

He cackles when he rides his bike down the street faster than he should.

He grins broadly when Sabrina draws him a picture of a fire truck or prints him out a picture of his favorite local fire truck.

He literally does a happy dance at the bowling alley when he knocks pins downs.

He gives me a big, happy high-five after I finish reading him a favorite book at bedtime.

When he's sitting on the porch and he sees me coming down the street, home from work, he squeals. That squeal is one of my favorite sounds, ever.

As kids get older, their unfettered enthusiasm tends to subside. I see it happening with Sabrina. At 10 years old, she still has some of that wonder and excitement—for science projects, for crafting‚ for baking, for catching fireflies—although she's maturing and getting less gushy. Max's exuberance hasn't changed over the years.

So, yes, perhaps his behavior is more typical of younger kids. Who cares? If this boy derives such bliss from everyday stuff, it's a gift—for him and for me. It's constant infusions of joy throughout my day. Heck, we'd all be happier if we savored life's little pleasures the way Max does.

Monday, July 27, 2015

With gratitude to the Americans with Disabilities Act...and still wanting more

Before I had a kid with disabilities, if you asked me what "discrimination" meant I would have mentioned prejudicial treatment of someone due to race, gender or sexual preference. Then I had a kid with disabilities and it became very apparent just how discrimination affects them, too, along with adults with disabilities.

This is on my mind because yesterday marked the 25th anniversary of the creation of the Americans with Disabilities Act (ADA), which says that persons with disabilities cannot be discriminated against in employment, public services, government, transportation and communication. The ADA applies to public programs as well as private ones that operate in a place of public accommodation, including recreational programs, camps, hotels, zoos, parks, gymnasiums and other places of health or recreation.

The ADA is the reason why a growing number of cities have made the areas and services children utilize—including playgrounds and public pools—more universally accessible. It is the reason workplaces have increasingly hired people with disabilities, although per the most recent Bureau of Labor statistics, in 2014 the unemployment rate for people with a disability was 12.5 percent and the rate for those without a disability was 5.9 percent.

In many ways, in countless ways, the ADA has been a game-changer. A powerful Washington Post  by disability rights scholar and legal activist Robert L. Burgdorf Jr, Why I wrote the Americans with Disabilities Act, clearly lays out the appalling conditions that existed pre-ADA. He notes, however, that the "ADA is not a panacea for people with disabilities," and that we cannot ignore the fact that there are major gaps in enforcement of the law—including some entities "I-won't-do-anything-until-I'm-sued attitude."

As a parent and a blogger, I am well aware that ADA is not a foolproof guarantee of accommodations. I think back to stories in the news, including the gym that at first refused to host a birthday party for a boy with Down syndrome. Or this story about a four-year-old girl with spina bifida in Missouri who uses a stander; little Izzy couldn't attend a local pageant because the stage was inaccessible. Or the one about a teen with cerebral palsy who took the DIY route for getting automatic doors installed at his high school (school buildings built before 1990 do not have to retrofit facilities if it results in undue financial burdens).

You might recall these stories. If you have a kid with special needs, you've probably lived some versions of these stories. We've mostly run into challenges due to toileting matters. The ADA guidelines expect child care providers to make "reasonable accommodations" for toileting. Depending on circumstances they may or may not have to diaper an older child who is not toilet trained because of his disabilities. We had a disturbing run-in last summer at a hotel's Parents' Night Out program because Max wasn't able to independently use the bathroom. Over the years, Max has been turned away from other programs and camps for the same reason.

Could we have taken legal action? Of course. Did I have the time that would have entailed, time that would have taken me away from my responsibilities for Max? Not so much. Would we have won? Who knows but my guess is, no.

What the ADA can't resolve is the persistent prejudice in people's hearts and minds that kids and adults with special needs are fundamentally very different from the so-called typical population, and that accommodating them is a burden and a beast. Kids require care, period. Some need more help than others. It's not so challenging or, necessarily, costly; it starts with having an open mind.

With social media, parents have a chance to speak out, raise a ruckus about injustice and help the world see our children's abilities. With the discussion raised around the ADA's 25th anniversary, I hope yet more awareness is raised—especially in the conscience of our country to do not just what's fair but what's right.

Also check out:

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

Image source: Flickr/Zach Frailey

Friday, July 24, 2015

The Special Needs Blogger Weekend Link-up: Come one, come all!

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 most amazing words in the history of words

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, July 23, 2015

Hello there, baby

One of the things about being pregnant when you're already busy with two kids plus work, a house, and other assorted responsibilities is that you don't actually have much time to obsess over your pregnancy. I'm lucky; I tend to have pretty good ones, indigestion and uncontrollable cravings for potato salad aside. And yes, I feel him moving around throughout the day and that's a thrill but otherwise, I forget I'm pregnant. Unless I have to run to catch a bus or train at which point I realize that I am not so fast on my feet.

Yet doctor appointments are magical, a time to focus on my body and this baby. I get an ultrasound each visit. Lying there in the dark, watching the baby toss and turn, seeing the blue/red flashes of blood flow and hearing the heartbeat bring me both peace (at 26 weeks, he's doing well) and bliss. 

During my last pregnancy—ten years ago—3D ultrasound was just beginning to be common in ob-gyn offices, and some charged extra for it. I got one of Sabrina for free, but it didn't come easy. I had to get a neurological scan because of what had happened to Max. The doctor clearly hadn't read my chart because when I was talking about Max having a stroke he said, "What did the autopsy reveal?" I sobbed so hard I could barely talk. "He didn't die," I finally got out. The doctor felt badly. "Here, you can punch me," he said, offering a shoulder. I didn't take him up on it. Afterward, the nurse did 3D imaging, which was almost worth the trauma. 

Now, I get to see the baby in 3D every time I go for a visit (I ask for it). This time around, I got a good glimpse of his face and I was all: "He has my husband's mouth!" I'm deluded, though, given that little dude is pretty smooshed in there and not yet at his most photogenic. 

He's growing at a good pace. I'm not worried about him; I'm at a high-risk practice and in good hands. Same with Sabrina. I wasn't nervous about her until C-section day. We were late for the appointment due to traffic, and then we kept getting bumped for emergency C-sections. As the day dragged on, I got increasingly anxious. Being in the hospital was stirring up traumatic memories. I wanted her OUT. I needed to see that she was OK. Late afternoon, I lost it. "I'M LEAVING!" I told Dave. "Where are you going?" he asked. "I'M GOING TO SEE A MOVIE!" I declared. (I didn't.)

When I showed Max the ultrasound photo, he thought the baby looked like him.

Wednesday, July 22, 2015

10 emoticons for special needs parents

I haven't had a good night's sleep in approximately 10 years

Child did something for the first time and HOLY COW HE JUST DID THAT

I didn't do any of the therapeutic exercises with my kid that I was supposed to today/this week/this month/this year/in his entire lifetime

Had to deal with insurance company incompetency, once again

Made the mistake of checking a child development book and now I'm feeling kind of nauseous

Child won't stop repeating same phrase/watching same movie/watching same YouTube video/singing same song/playing same video game/reading same book/same etc. etc. etc.

Therapist/teacher/doctor/relative/mailman/lady at dry cleaner counter gushed about how well child is doing
Having one of those grief spurts

I had eleventy billion things to do today and only one got done 
Too burned out to feel any emotion whatsoever 

Tuesday, July 21, 2015

Rage against distracted drivers (and some self-blame)

The other night, I jumped into a cab in New York City, told the driver where I needed to go, then started checking email. A couple minutes later, I glanced up to see the driver repeatedly glancing down at the console beside him as he drove. I realized he was looking at a navigator on his phone.

"IT IS NOT OK TO LOOK AT YOUR PHONE WHILE YOU'RE DRIVING," I said, heatedly and anxiously. Granted, sometimes it's the pregnancy hormones talking these days but people who continuously glance at their navigators as they drive is an ongoing pet peeve.

"I'm using my phone to navigate," he explained.

"That's really not safe—your eyes should be on the road," I said. "I'm pregnant, this scares me and I'm going to get out if you don't stop."

He did.

In my mind, the greatest threat to the safety of my family isn't crime, terrorism or some natural disaster. It's the very real terror on the roads: people who use their smartphones as they drive.

There's a major campaign against distracted driving, AT&T's It Can Wait, which I recently learned more about when I attended a presentation sponsored by the company. A new poll of 2067 people in the U.S. finds that seven in ten engage in smartphone activities while driving, mostly texting and emailing—but a fair number of people on the road are checking Facebook and Twitter, too. Three in ten people surf the web. And seventeen percent of those polled 'fessed up to taking a selfie while driving. Yikes.

I haven't been hearing much backlash against navigation distraction, which is likely even more rampant with the advent of Waze, the community-based traffic and navigation app. As useful as I find Waze, the issue of drivers looking at it worries me. Adding to the distractions: Drivers can tap a thumbs-up or "Not there" when alerts crop up that police, stopped vehicles, accidents or other obstacles lie ahead.

I never use social media or text while driving; the kids are usually with me and I don't want to risk their safety or set a bad example. We got a smartphone car mount for our windshield so my iPhone is at eye level, and I try my best to just listen to the navigator voice when the car is moving and look at directions only when stopped. On occasion, I lapse. After Googling around, I've discovered that taking my eyes off the road (no matter how quickly I do it) qualifies me as a "distracted driver," per the Centers for Disease Control and Prevention—putting me squarely in the same category as that cabbie.

Checking a navigator might seem acceptable because you're using tech for a definitive purpose—finding your way as opposed to, say, chatting with a friend. It's not. The bottom line is,
you're not looking at the road. I think back to what I learned in Driver's Ed, and how peripheral vision comes into play during driving; eyeballing a smartphone or car navigator messes that up.

When you consider everything that can go wrong when you're driving, you realize that glancing away from the road for even a split-second can be dangerous to your car's occupants, other drivers and pedestrians. According to the most recent stats available, in 2012 3,328 people were killed in crashes involving a distracted driver, and an additional 421,000 were injured.

Currently, 14 states prohibit drivers from using hand-held cell phones while driving; 37 states ban all cell phone use by novice or teen drivers; and 46 states ban text messaging for all drivers, per the National Conference of State Legislatures. That includes when they're not moving; I recently spotted a cop giving a ticket to a young woman texting in her car while at a stoplight. I turn off my phone's sound while driving, so I'm not tempted by the siren call of that Facebook Messenger "Ding!" and other alerts.

AT&T has a new commercial out, Close To Home, about one of the most seemingly innocent forms of distracted driving. Be warned, it's disturbing.

As the It Can Wait campaign notes:

No text is worth a life.
No photo is worth a life.
No email is worth a life.
No post is worth a life.
No search is worth a life.
No video is worth a life.

And, I might add:

No directions are worth a life. This mom is going to stop looking at the navigation app when the car is moving.

Image source: Flickr/Jeepers Media

Monday, July 20, 2015

The most amazing words in the history of words

"It's amazing you can understand him," people sometimes say to me. Well, yes, I can, often because Max likes to repeat a lot of the same phrases. He uses the speech app on his iPad to communicate and he knows that's critical for people at school, friends and others to understand him.

At home, though, he prefers to speak words and say them again and again until we get it. This can be tricky, since the majority of consonants are not yet his thing (yay for the letters "m" and "n"). But he wants to talk so badly, one reason I took a hard stand when his speech therapist at school said articulation would no longer be a focus of therapy sessions.

Sabrina is particularly good at translating Max-ese, and when I am not sure what he's trying to tell me, she often is. Sometimes, we have a good laugh. (See: Want to buy a monkey?)

What's most amazing of all is that this boy is talking. Those doctors in the NICU sure can do a number on you, and when we were told he might never talk, that stuck in my head. Once, years ago, someone laughingly said to me that when Max did speak one day I'd get tired of hearing him. "When he talks, I will never, ever get tired of hearing him," I informed her, and it's true.

Every single day, I am grateful for the words. For the rest of my life, I will be grateful for the words.

"Hi, ohmmmy!"
["Hi, Mommy!"]

"I ahn ooo eee a ire-ahn ehh I owe uh!"
["I want to be a fireman when I grow up!"]

"Are ooo oh ahh-eee?"
["Are you so happy?"]

"Oh-eeen eeeesh my ay-or-ih or!"
["Bowling is my favorite sport!"]

"Ayn oooh!"
["Thank you!"]

"Oooh ire-ouse!"
["I'd like to visit a new firehouse. Now, please."]

"I ahn ooo eee inion ooh-eee!"]
["I want to see the Minions movie!"]

"Ah oooh oh-ay?"
["Are you OK?"]

"I ahn oooh-eeee!"]
["I want sushi!"]

Oh, and the best words of all, the ones I have always seen in his eyes and in his kisses but that he has only started saying in the last year:

"I uh ooooh, Ohmmmy!"
["I love you, Mommy!"]

Friday, July 17, 2015

The Special Needs Blogger Weekend Link-up: Post now!

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: She wants to make sure the baby is healthy

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, July 16, 2015

She wants to make sure the baby is healthy

"Mommy, did you know when Max was in your belly that something was wrong?" Sabrina asked the other morning as we talked about how big the baby was getting (he's cantaloupe or rutabaga size, depending on the source). My heart twinged.

I've been waiting for that question; I suspected it's been on her mind. Particularly because she regularly asks if the baby is healthy, her little brow knit with concern. If I happen to mention within her earshot that my stomach is bothering me (thanks, indigestion), she'll ask if the baby is healthy (and she uses that word). When she knows I have a doctor appointment, she asks if the baby is healthy. If someone accidentally bumps into my belly, she asks if the baby is healthy.

I thought she was asking because of Max and sure enough, that's what it was. I haven't wanted to outright ask her if that was a concern because, just in case, I didn't want to plant the idea in her head. Although I've explained to her that something happened to Max at birth that caused the cerebral palsy, we hadn't ever discussed my pregnancy with him. It was normal, uneventful and happy, and I told her that.

"Honey, I had a great pregnancy with Max and a great one with you!" I said. I explained that I was going to special doctors who were going to make sure this baby is totally OK when he's born. We checked BabyCenter to see what the little guy is up to this week: He's beginning to get some baby fat, growing more hair, and generally starting to look more like a newborn. She was excited to read that.

Sabrina loves Max so deeply, and clearly sees the abilities he has. She would not want any other brother. Yet she also knows the challenges he faces and the help he needs, and she does not want the baby to contend with the same—what she's getting at when asks, "Is the baby healthy?" She doesn't mean physical health.

That twinge I felt in my heart when she asked if I knew something was up during my Max pregnancy was for him, too. I think Sabrina's concern is totally normal and yet, I can't but help feel badly when she worries about having another child with disabilities. The reality is, Max is one awesome child.

Maybe there's some guilt mixed in there, too. Because back when I was pregnant with Max, I wouldn't have wanted him to have disabilities, either. Only now, I honestly can't imagine him being any other kid.

Wednesday, July 15, 2015

8 chores for kids with special needs they'll actually do

Summer break is a good opportunity to get a kid with special needs into the swing of doing chores. If your child is anything like Max, it takes some doing for him or her to adapt to new habits. And of course, you always can bribe them with ice-cream. Ha, ha.

"Chores provide the opportunity for parents to provide creative meaningful opportunities for children," notes Bob Cunningham, MA, EdM, the in-house advisor on learning and attention issues for and head of school at the Robert Louis Stevenson School in New York City. Check out his top tips on getting children to do chores that they'll want to keep on doing.

If your child struggles with focus...

Assign a chore that is important to them, which makes it easier to remember. Of course, getting the chores done may ultimately help you, but first and foremost you want to make your child feel invested in them.

• Do activity prep. If your child plays sports or attends a dance or art class, give them a chore that impacts their ability to attend. For example, ask them to pack their supplies and materials the night before. This teaches preparation and provides extra incentive for focus.
• Try electronic engagement. If your kid is into technology, ask her to make sure everyone's electronic devices are plugged in and charged before bedtime (a highly motivating task that involves moving around the house). Or if she likes video games, have her organize her gaming space several times a week.

If your child has balance and coordination issues...

These children needs tasks that are safe and make them feel confident. Focus on ones that do not involve extra steps or movements—think sitting in one place and organizing things.

•  Do desktop cleanup. Assign a child the task of organizing the family’s computer each week. Ask them to help arrange files and delete excess images saved to the desktop. Carrying over skills learned in school, including using the mouse or track pad, can reinforce their learning.
• Create a weekly schedule. This can be dedicated to the child or the entire family. It's something that a child of any age can help with, and keeps things organized while providing a task your child can excel at performing.

If your child is hypersensitive...

Parents of children who are hypersensitive may get frustrated when a child doesn't complete the task.  In reality, your child’s strong resistance or reaction to the chore is likely a reaction to loud noises, strong smells or other sensory issues that make him or her uncomfortable. Try these ideas instead:

•  Maintain a grocery list. Help your child come up with a list of important household items to check on a regular basis, such as looking through cabinets to see which groceries the family needs. Younger kids can work from a printed chart. 
•  Try pick-up duty. Have your child remove items from the floor so that someone else can vacuum. If your therapist or school is teaching your child desensitizing strategies, you can also try easing them into vacuuming by doing it in short bursts, then gradually increasing the area or number of rooms they complete.

If your child has lots of extra energy...

Put it to good use with meaningful household contributions! Look for tasks that involve bending, moving and lifting and try to pair them so that your child moves from one to the another and then back. 

• Create laundry time. Have your child pick up his own clothes; carry hampers or laundry bags from rooms to the washing machine; and sort, wash and fold the clothes. Finally, they can return hampers and clean clothes. Pick and choose your child’s laundry responsibilities depending on their age and stage of development.
• Do dish clean-up. This is a multi-step task, perfect for kids with lots of energy—especially if dishes are washed by hand. For dishwashers, your child can rinse, load and unload.

Take time to demonstrate the value of your child's chores; for example, point out how what he or she has done makes something easier or better for you or the family. If your child sees that his chore helps loved ones, they will be more engaged—and more likely to excel at chores. is a new, comprehensive online resource for access to experts, personalized recommendations, interactive tools, and a social community for connecting and sharing tips with parents from around the country.

Image source: Flickr/donnierayjones

Tuesday, July 14, 2015

One thing this mom refuses to worry about

"I worry about him going down the stairs," our babysitter said as she watched Max making his way to our first floor the other day. Max goes slowly, taking it one step at a time. Doing it alone is a new skill for him. He first walked upstairs alone three years ago, but heading down takes more coordination and balance.

Could I worry about Max tumbling down the stairs? Oh, yes. Because it's very possible. Even on flat ground, he's been known to trip, and he's got the scrapes and bruises to prove it. But I can't always be there to stand guard when he goes down, and I refuse to get anxious about it.  Besides, Max wants to do it himself, and he is proud of it. 

In the mornings, Max comes in to kiss me good morning and then I hear the clomp, clomp, clomp of him moving down the stairs. I do feel a little rush of relief when he reaches the landing. In general, it's pretty amazing that he is self-sufficient in the a.m., able to entertain himself for a while (hello, iPad). 

There are just so many things I could worry about with Max and his safety, and if I chose to engage I'd be a walking ball of anxiety—not good for me or the kids. I could worry about him choking on food or aspirating liquid, because of his chewing and swallowing issues. I could worry that he will really injure himself if his bike tips over when he rides the inclined sides of the street, which he has done. I could worry that he will close a door on his fingers because of his coordination challenges, accidentally walk barefoot on our hot deck, fall out of bed at night.

As it is, I regularly wrestle The Dread of the Seizures to the ground, reassuring myself that his labs for the new levels of medication were good. But otherwise, I repress, compartmentalize and distract myself from worries. I try to be there for Max as best I can and safeguard the house as best I can, but I know that I cannot humanly protect him from all the potential dangers at home—or elsewhere. Nor can I live life putting that pressure on myself. You can babyproof a house, but there's only so much you can do to special-needs-proof a house (or a kid).

I also want Max to gain confidence in his abilities. I want him to feel secure in what he can do and in the possibilities of mastering new skills. I'd like him to understand that if he practices something (the physical therapists at his school have long been working on going down the stairs), he can pull it off. If I'm always there to cushion his falls—physically and psychologically—he will remain codependent on me.

It would be ever so lovely if Max became self-sufficient at vacuuming and dusting, too. Also: Making brownies. With icing.

"He's been doing a good job but you should hold his hand if it makes you feel more comfortable," I told the sitter. Obviously, my being OK with Max going downstairs on his own as his parent is very different than a sitter feeling that way. As for me, though, I'm going to continue to let this boy go it alone.

Monday, July 13, 2015

The safest sunscreens for kids: what to use, what to avoid

What are the safest sunscreens for kids? For starters, it's good to know what not to use, and my friend Paola recently referred me to a 2015 list of the worst sunscreens for kids from the Environmental Working Group (EWG). After reading it, I promptly tossed a few sunscreens we had and returned some to the store.

What makes for the worst sunscreen for kids? As determined by the EWG Sunscreen Hall of Shame, they contain retinyl palmitate (a potential carcinogenic) and oxybenzone (which can mess with the hormone system).

The 11 worst sunscreens for kids:

Banana Boat Clear Ultramist Kids Max Protect & Play Continuous Spray Sunscreen, SPF 110
Coppertone Kids Sunscreen Lotion, SPF 70
Coppertone Kids Sunscreen Stick, SPF 55
Coppertone Kids Wacky Foam Foaming Lotion Sunscreen, SPF 70+
Coppertone Water Babies Sunscreen Lotion, SPF 70+
Coppertone Water Babies Sunscreen Stick, SPF 55
Equate Kids Sunscreen Stick, SPF 55
Kroger Baby Sunscreen Stick, SPF 70
Kroger Kids Sunscreen Lotion, SPF 70
Neutrogena Wet Skin Kids Beach & Pool Sunblock Spray, SPF 70+
Up & Up Kid's Sunscreen Stick, SPF 55

Check out the full report, which also lists the worst spray sunscreens and the worst sunscreen lotions for adults. Some of my favorite healthy sunscreens for kids are from AlbaMustela, Badger, The Honest Company and California Baby. If your kid has sensory issues, note that mineral sunscreen lotions tend to be thicker and take longer to rub in. Check out EWG's complete list of the best beach and sport sunscreens.

Friday, July 10, 2015

The Special Needs Blogger Weekend Link-up has arrived

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 power of special needs parents: a video reminder

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, July 9, 2015

The fantasy about the parade

Morning time. I am getting ready for work and Max says something I don't understand. His iPad is downstairs, so I grab my phone and ask him to type out the words.

He types, "Pard" and stops.

Oh. What he is is telling me is, "I want to ride a fire truck in a parade in 2016." I know, because this fantasy started a few weeks ago and he's been reminding me about it every so often. I'm not quite sure where he got the idea, but my guess is he saw a YouTube video and he was all, WOW, WHY HAVEN'T I DONE THAT YET? LIFE IS JUST PASSING ME BY.

I am not one to crush Max's fantasies. We all need them and this one's just a little more exciting than the ones I tend to have, which fall along the lines of someone locks me in a room for a few days with a big bed topped by a giant fluffy white comforter and all I do is sleep.

I am flattered that Max thinks I could pull this off. And that he understands it's not going to happen, like, next week. I have till some undesignated time in 2016.

This seems doable. It's not like Max wants me to, say, buy him a fire truck (although a couple of you have kindly sent me links to used fire trucks for sale, thankyouverymuch). I think our local fire station might participate in a Memorial Day Parade somewhere. I've added it to my to-do list, along with planning for the baby (due first week of October), planning Max's fire-truck themed bar mitzvah (April) and redoing our kitchen (August).

Maybe I can outsource this? Actually, I'd rather outsource the C-section.

Image source: Flickr

Wednesday, July 8, 2015

The road not taken, special needs edition

This weekend, we were driving home en route from dinner when a couple of unexpected things happened.

Dave and I were listening to the second Grateful Dead Fare Thee Well concert and the kids were actually letting us. Miracle no. 1. Dave's the deadhead of the two of us, but this was history and I wasn't missing out on it.

Wait, was I hearing right? Were they doing an instrumental rendition of When You Wish Upon A Star? Yes, they were. Max's face lit up; he loves that song. All of us listened, lulled by the beautiful melody as Walt Disney rolled over in his grave.

Then we got to the big intersection in our neighborhood. And something else very unusual happened.

"Left!" said Max. He wanted to take a different way home.

Maybe not seemingly a big deal, but really, THIS WAS A BIG DEAL.

This is a kid who has always loved routine, who has liked nothing more than talking about the same things again and again, who used to dread change.

This past year, especially in recent months, his intellect, curiosity and sense of adventure are blooming. Max wants to make new selections from his bookshelf. All the books that have lay dormant for years, untouched, he's going through. He wants to try new restaurants and visit new places (for his next joy trip with Dave, he'd like to head to Montreal). He often asks "Why?" about stuff. Yesterday, for the first time, he asked me about where I work and if I could take photos of my office to show him.

He is interested, truly interested, in homework. This is partly thanks to IXL, a K-12 math and language arts practice site that rewards right answers with comments like "Awesome!" and "Fantastic!" and tracks progress. I mean, it makes Max downright gleeful about working on fractions. He's getting to be a faster reader. And he's got some fun new phrases in his word repertoire, including "There you go!" Recently, when we were driving around our neighborhood and kept getting rerouted by detours due to road work, I sighed a big sigh and Max said "OMG!"

Max's social skills are emerging, too. He's always been super-friendly but he's starting to truly get conversation, talking not just about his favorite things (although fire trucks and bowling are still a preferred topic) but asking what people's favorite movies and sports are. When kids from other schools visit his, he readily uses his Proloquo2Go app to chat with them.

Too bad the part of his brain that finds Disney Jr. appealing hasn't yet changed. It's not so much that I mind this for Max—what makes him happy makes him happy—it's that there's only so much Henry Hugglemonster and Handy Manny a parent can take. Not that Sabrina's fondness for Jessie is much

I obviously have no idea what is going on in that head of his, but it's incredibly exciting. In general, it's fascinating to see your children's minds flourishing. When you're talking about a child with brain damage who has a history of doomsaying doctors, though, it's especially awesome.

With all due respect to Robert Frost:

Two roads diverged in suburbia and Max and I
Took the one less traveled by
And that has made all the difference.

Image source: Fickr/Thomas Hawk

Tuesday, July 7, 2015

The power of special needs parents: A video reminder

OK, you know just how much you regularly achieve as a special needs parent, whether you're advocating for your kid to get more therapy sessions or better schooling, or just helping the people in your lives appreciate him for who he is. Sometimes, it's frustrating to think of how much more you could do, if you had the time. Often, it's maddening when roadblocks crop up in front of you.

I saw a video this weekend that reminded me of the importance of just asking for what you want. Yep, that's it: asking. Including seemingly big asks.

"It would mean so much to my daughter and children like her to be able to take part in a New York City Ballet workshop, and for one day, feel like they too could become ballerinas," mom Natalia Armoza wrote in an email to the New York City ballet. Her daughter, Pearl, has cerebral palsy. Natalia had heard about workshops there but, she noted, "I didn't want her to be the focus of other people's stares or comments."

The result: the NYC Ballet, with the help of the utterly awesome Dr. Joseph Dutkowsky, associate director of The Weinberg Family Cerebral Palsy Center (Max met him in February), set up four workshops at Lincoln Center for Pearl and kids like her. As mom Joanne Duff described the experience, "Freedom. Total freedom. She can let her body go, she can be the same as someone else." As her daughter Juliet said, "Just let it go, and feel the rhythm and yeah!"

There are other New York area programs that offer ballet for kids with disabilities, including Dancing Dreams and Feet in First (until recently, only offered in L.A.). But children learning moves at the world-renowned New York City Ballet is a first. Upworthy captured how it all played out for nineteen kids…all thanks to one mom's email.

Monday, July 6, 2015

And I think to myself what a wonderful world

One of the hazards of getting older—disease, death and wrinkles aside—is neglecting to savor the wonders in this world. The long weekend reminded me of that.

It started when Sabrina and I headed down a path to the beach and we came upon a ladybug convention. At least that's what it looked like; there were clusters of them everywhere. We stared in amazement for a while. "They're a kind of beetle!" Sabrina told me. I had no idea; this is the sort of thing that escapes you when you grow up in Brooklyn.

And then, the beach—perhaps one of the greatest reminders of the forces out there bigger than we are. For once, I actually got to sit and do nothing but stare at the waves coming in. I know, soon enough I will be busy entertaining a baby so I'd better enjoy it while I can.

And then, Fourth of July, a day packed full of wonders. First up: a town ice-cream eating contest. Sabrina eats way too politely, as it turns out.

I'm grateful that the kids still get gleeful about so many things. They're one of my best conduits to wonder, along with reading, traveling and meeting new people. I adored Sabrina's saucer-eyed appreciation of the baking contest. We didn't contribute, but she was no less enthusiastic than last year when we made a flag cake with strawberries and blueberries. Instead, we participated by standing poised with a plastic forks (we BYO'd) and making a mad dash for the sweet-laden table once the winners were announced and tasting was allowed. Blueberry cake! Snickerdoodles! Cream puffs, the eighth wonder of the world!

Afterward we settled down in our sugar coma to enjoy the dog show. I remain confident in our decision to have a baby instead of getting a dog, although I'm not sure Max felt the same.

And then at night, fireworks, which tend to instill awe in even the most jaded of adults. Max is very interested in fireworks but still fearful of the noise. Usually, Dave or I take Sabrina to see them and one of us stays home with Max but this year we all decided to have a pajama party. We hung out in bed and watched New York City's fireworks on TV.  Suddenly, we realized we could pretty much see our town's fireworks through a window.

We stood together, happily. And really, there is nothing more wondrous than being surrounded by your family and enjoying life in vivid color.

Friday, July 3, 2015

The Special Needs Blogger Weekend Link-up: Holiday weekend special

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: When it's hard to say no to your kid

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, July 2, 2015

Kids With Special Needs Around The World: Hungary

This is another guest post in the Kids With Special Needs Around The World series. Flóra Torok
is mom to David, 4, who has cerebral palsy; Hannah, 10; and Samu, 8. They live in Hungary, in downtown Budapest. In keeping with the country's joint family system, the grandparents live with the family. Torok works for an artist agency, and her husband is a company lawyer for a telecommunication company. She writes the blog Playgrounds For Allstop by and say hi!

Hungary is a small country in Central Eastern Europe with 10 million inhabitants. Our capital is Budapest with the river Danube splitting the city into two parts, the hilly Buda and the flat Pest. We don't share our language with any other nations in the world; we are the only ones speaking it. Our national anthem is like a funeral march, we don't have seashores or very high mountains but we see ourselves as one of the smartest and most talented nations in the world. We are extremely proud of our ranking at the Olympic Games and the number of inventions we gave to the world (check them out here while listening to a typical Hungarian folk song).

I only got involved with special needs children in 2011. After having two wonderful and healthy kids, the wonderful David was born. Due to a serious problem with his late twin brother, he had to be born two months earlier than the due date. It turned out that he suffered from an in-uterus hypoxia. He was really tiny (2.8 pounds) but he was said to be healthy.

The weeks in the Perinatal Intensive Care Unit were horrible. Back then, we were allowed to see our baby only three times a day for 30 minutes each time. Can you imagine that? The trends are better now. More and more hospital wards open up for the parents and deal with parents as team members. Unfortunately there are still serious problems in the Hungarian healthcare system. Due to the inadequate infrastructure and humiliating salaries of health professionals, a terrifyingly growing number of health workers are leaving Hungary for Western Europe. As a side effect, corruption is blooming in the state health institutions.

Early Intervention Centers and therapies are available only for those with good commute to the services, which is difficult in our Budapest-centralized country. These services are difficult to afford too, even with the state subsidizing them. Those living in small villages in very bad financial conditions can't even afford to take the public transport to the closest hospital or to an Early Intervention Center to find out what is wrong with their child's early development. I am sure all of you reading agree on the importance of the early years. Though the state provides extra benefits to the families with special needs children, high quality therapies cost twice or three times as much. We were lucky because my husband and I both have jobs, we live in downtown Budapest and we speak foreign languages so we can read about worldwide solutions for our child's disability. My heart breaks when I think of the families in rural Hungary.

As for improving physical and motor skills, our therapists and methods are quite famous in Europe. The Pető Method for physically disabled children is well known in many countries. There is also a unique method of manual therapy called DSGM which is really effective. Physical therapists can learn it in different countries within the European Union. We also use a playful Planned Senso-Motor Traning for kids called TsmT, as well as the well-known Bobath, TheraSuit and Pfeffenroth therapies.

Getting therapy at the hospital
There are only two problems with this wide range of therapy possibilities. As I said they are pretty exclusive as they are quite expensive. Also, the practitioners of these methods don't agree on what is best for an individual child. As a parent it is hard to find the right path to go on.

My English knowledge was very useful when we found out about the Single Dorsal Rhiztomy surgery available in St. Louis, and now available in Hungary, too! That surgery is planned for David in 2016.

The education for disabled kids can vary. Some institutions favor integration into groups of typical kids, but you can also find specialized schooling for autistic, visually or hearing impaired kids. For example, David goes to a special kindergarten where lots of kids have cerebral palsy. They play and are educated in very small groups, with a very good ratio of teachers and children (almost 1:1). Our special kindergarten has its own swimming pool, which is also unique here.

David's school organizes weekly field trips in Budapest, which is a huge challenge and requires a lot of effort. You know why? It is because despite that our law requires accessibility in all public places, it is almost impossible to use the public transport or reach a public building with a wheelchair. I remember my astonishment when I saw huge groups of wheelchair users in Vienna, Austria, which is not too far from Hungary. I was wondering: Are there more disabled people living there? I had to realize that they had simply better access to public services such as transport. They were able to access the streets so they were more visible to me.

David is a happy little guy who enjoys life a lot. He learns everything from his siblings—songs, poems, all the names of Spanish soccer players!—and enjoys being with them. he can now speak and sentences and tell stories, but is too shy to show this in front of outsiders. He also loves the Beatles. He is behind due to his spasticity; he can crawl around the house, and tries to stand up next to furniture. We help him with eating, but he can feed himself with simpler things like a tomato, although it is really squeezed until it gets to the mouth! He loves to play soccer...sitting on the shoulders of his Dad.

So far, he doesn't like going to the playground—he doesn't really do anything, just usually stays in my hands. Not that it would matter, because we don't have don't have many opportunities for outdoor activities. Accessible playgrounds are rare like the white crow; inclusive ones are nowhere in the country. Families often stay home, isolated, unless they have a suitable car and petrol to pay to go.

Hungary needs inclusive playgrounds!
Me and a small group of parents raising kids with special needs had enough of the bad experiences. We decided to find new ways to help our kids and change their environment and challenge our society's attitude towards disability. Two years ago we started the MagikMe Project and began to work on our first inclusive playground where disabled kids will be able to play with their able-bodied friends and siblings, even without their wheelchairs or walkers. We started a crowdfunding campaign to build the first special playground device. And I have to say our country proved to be exceptional again: within the first week our supporters contributed 60 percent of the required funds, and it is now fully funded. Not a bad result for a country that has little knowledge on crowdfunding.

Check out our campaign if you are interested and share it or support it otherwise if you like the idea. International interest would mean a lot to us. Most importantly, it would mean that we are not alone.

Previous Kids With Special Needs Around The World posts:

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