The Special Needs Blogger Weekend Link-up: Share time

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: Love That Max: On explaining your child's disability to him

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. 

Happy linking!

What's on your special needs parent gratitude list?

 

I have a little strategy to perk me up at times when I get bummed about something related to Max's progress: I browse my Max Gratitude List. It always makes me feel better.

I used to consider things I had to be grateful for mainly around Thanksgiving; otherwise, I'd get sucked into the chaos known as my life. Who has time to frequently be thankful? Who has time to even think on some days? After I wrote an article on gratitude for Health magazine, though, I found out that people who are regularly appreciative are happier and healthier, and I learned some simple ways to do it. That sparked the formation of my Max list.

The list is nothing fancy; actually, it's an email I keep in draft form. Even just starting the list was happy-making. I'm always adding to it, and referring back to it, for perspective. There's no particular order—it's all good: 

• Max's determination

• Max's smile, and how it lights up his entire face

• He walks

• He talks

• He's bright

• He's curious 

• He asks "Why?" about stuff a lot lately, he never used to

• He's learning to read

• Max's many laughs—the giggle, the squeal, the chuckle, the guffaw, the evil laugh when he does something wrong and we call him on it

• The seizures are under control

• His hair

• His pudgy fingers

• He's usually cheerful

• His sense of humor

• His incredible visual memory

• How concerned he gets when Sabrina is upset

• That he fights with her, so typical!

• The sound of him saying my name, Dave's and Sabrina's

• The way he says "There you go!" whenever you successfully do something

• He's eating and drinking independently

• He's really good at using his iPad and speech app

• We're lucky he has an iPad and apps, and that technology continues to improve

• He's super-charming

• He can ride a bike

• Potty-trained! Day and night!

• How cute he still looks when he's wrapped in a towel after a bath

• He's in a great school

• His teacher is wonderful

• He has great therapists in school and out 

• He has a good team of doctors

• The Friendship Circle programs he's in

• He can walk upstairs

• He can drive bumper cars!

• His sensory issues have improved

• He's gotten so into trying new foods  

• Even sushi!

• He loves to travel 

• Traveling with him has gotten so much easier

• The joy he gets from visiting the fire station

• He looks so cute in his firefighter hat

• The way he lifts his hands up and says "YAY!" when he's excited

• His kisses

• He can hug now, too

The other day, I was concerned about Max's grasp of math. It's not coming easy to him, and I've been asking his teacher for more worksheets to help reinforce what he's learning at school. We'd just finished doing some homework, and I'd gotten sucked into one of those mental tornados in which you start worrying about one thing (eeep, he's still having trouble getting addition) and suddenly you're caught up in all sorts of worries (what's going to happen if he doesn't get basic addition, is he going to fall really behind at school, what happens if he becomes an adult who can't do math, do you really need to know basic math to do OK in this world, will he be able to fully read, how is he going to function as an adult, why are you even thinking about this). I clicked opened my Max Gratitude List. I read down from the top. Bam! Perspective: Max has got a whole lot going for him. He'll deal. We'll deal. 

Oh, how I wish I'd had a list like this when Max was little. Maybe it would have been a lot shorter, and it definitely would have been different (back then, I was grateful he had lived). But when despair and anxiety consumed me, I think it would have really helped to have some irrefutable, concrete consolation. There's no denying a list. 

Start your own list. I'm telling you, it's like therapy.  

This post was sponsored by author T.A. Barron, inspired by his upcoming book The Wisdom of Merlin: 7 Magical Words for a Meaningful Life. It tackles that eternal question: What is the meaning of life? Gotta love that the answer has seven words, including "gratitude." You can preorder The Wisdom of Merlin now, and it'll be available wherever books are sold on March 23, 2015. 

Love that Sabrina: 10 years of awesome

Daddy said you looked like a pink marshmallow when we brought you home from the hospital in the bunting.

I used to nibble on your legs because I thought they were so delicious. Aren't you glad I stopped doing that?

I loved dressing you in hats. 

You called your pacifier a "habifier" and refused to give it up until we were going to Disney World, and I told you that they weren't allowed there. (Sorry.)

You liked to pretend to call and place orders for Chinese food.

 You wanted to feed this bird at the zoo popcorn and you got mad because I said no. I am glad you have learned that Moms are always right. RIGHT?

Like many kids, you went through a princess phase.

You also got over the princess phase.

 I thought you looked like a model in a clothes catalog in this photo.

You are always an amazing sister to Max.

You once met a celebrity, Jennifer Garner, at an event only you were too shy to talk to her. She thought you were super-cute. 

You sure aren't shy at home!

You and Daddy always have adventures.

First day of kindergarten. You didn't like to wear dresses back then. Once, I offered you twenty dollars to wear a dress to a party and you turned me down.

You quickly got better than me at figuring out computer stuff.

You can do things I never could as a kid, like hula hooping...

and skiing.

You used to ask me to count the freckles on your cheeks.

I thought you were gorgeous the day you were born, and then you just kept getting more gorgeous.

You're very good at making money, whether you're selling lemonade or Girl Scout cookies or trying to get me to give you extra allowance.

You're a wonderful violin player...

...you excel at lacrosse...

...and you're amazing at gymnastics and dancing, too. You make me so proud.

And you know I love how much you enjoy reading.

I am glad you thought I was cool enough to go to the Katy Perry concert with you last summer. Maybe that is because I am the one who got the tickets? Ha ha! 

Everyone who knows you thinks you're such a nice kid. It seems like the dolphins thought so, too.

You're a girl who's beautiful inside and out. Happy 10th Birthday, sweetheart. 

Love,

Mommy

On explaining your child's disability to him

A group of students are visiting Max's school next week, and Max had to fill out a form about himself. Next to "It is easy for me to..." he wrote "laugh." And next to "It is hard for me to..." he wrote "talk."

My heart twinged. Obviously, Max knows how much effort it takes to articulate words, it's just that he's never acknowledged it. I do—I regularly say "Honey, I know it's frustrating" when he's trying to say a word or a phrase that I can't understand and he's insistent on speaking it instead of using the speech app. Max tends to lean over and repeat himself loudly in my ear, because he thinks I have a hearing issue. It's me who has the problem, not him. Love that.

Max knows he has cerebral palsy, and is figuring out what that means. (A couple of years ago, he informed me that Lightning McQueen—his idol at the time—had cerebral palsy, which I figured was a good sign.) I try to bring up the CP in an organic way, like after he wrote that talking is hard. I explained that the muscles in his tongue sometimes don't do what he wants them to, because cerebral palsy can make it hard to move certain muscles. I showed him that his body has lots of muscles, from head to toe. I asked him to pick a leg up off the floor, and told him he did a good job using the muscles there.

Someday, I'll explain to Max that his brain can't always send signals to his muscles to tell them what to do, and we can talk about the kind of CP he has (spastic four quad), but we're not there yet. I'm not sure about the "right" way to talk about cerebral palsy. As often happens with parenting, you wing it and hope for the best. Who knows, maybe I'll be able to outsource it. He he.

So then Max grabbed his iPad and showed me photos of classmates. He was asking what was up with them.

"You know some kids have autism, right?" I asked.

"Yeah!" he said.

"And C. has Down syndrome," I said.

He nodded.

"Sabrina?" he asked.

He wanted to know what Sabrina has.

"Sometimes, she has an attitude," I said, cracking up. He didn't get it (perhaps a sign I really should outsource future conversations). Then I told him, "Sometimes people have challenges that you can see and sometimes you can't see them." Then he decided enough with the talking, he needed to go watch some fire truck videos.

To be continued.

What I will eat in Chicago: by Fireman Max

This is the second guest post from that world-renowned writer, Fireman Max, here to share more about his upcoming trip to Chicago. Like any growing boy, he gets very excited about FOOD. He figured out how to spell some words by looking at the items in our fridge, and he chose all the photos. 

I am going to eat at new fire house restaurant.

i will  eat mac and cheese with ketchup.

I will  drink  milk.

I will eat sushi roll.

I will eat Chicago pizza.

I will eat chocolate yogurt.

I will eat chocolate ice cream.

I am happy.

Images: Firehouse Grill, aka foodalogue, Blixt A., beautyredefined, Frank Gruber, Yoplait, Vegan Baking

The Special Needs Blogger Weekend Link-up: Post, she said

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: Parents of kids with special needs have a dream

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. 

Happy linking!

Group therapy: Having another kid after a child with special needs

"The big news is that M. is going to be a big sister," wrote an online friend whose child, like Max, had a stroke. "I'm due in spring and they're monitoring the baby closely. We're excited, but anxious, which leads me to my question: What are some good methods to make sure neither kid is being neglected? During the newborn phase, I don't want M. to feel left out. And as the new baby gets older and realizes how much extra help M. needs/gets, I'm scared of that child feeling shoved to the side. Any advice would be welcomed."

I get worrying about what the future holds (boy, do I get it). But as I told my friend, "You will figure it out as you go along, same as you've figured out parenting a kid with special needs." Besides, it's impossible to know what a kid's reactions will be to a new sibling—or how that sibling will ultimately feel about having a brother or sister with special needs.

When Sabrina was born, Max was 25 months old. He was never jealous of her, possibly because at first he thought she was a toy doll. He liked sitting beside me when I nursed her. He got his own special cuddle time, and I did my best to stick with his usual bedtime TLC. Keeping routines in place really helped Max through the newborn cry-eat-poop-nap-cry chaos, I think. Besides, given that Max still needed plenty of his own care at that age, one of us was always dressing him, playing with him, feeding, bathing him, changing him, you name it. He was the opposite of neglected! He also got lots of love from my mom and sister, who regularly visited. 

Eventually, Dave and I each started doing activities alone with Sabrina to give her extra attention. Last weekend, she and Dave went skiing for the day. In a couple of months, I'm taking her to an Alvin Ailey dance performance. And when Max has a weekend program, the three of us have brunch. We discuss Sabrina's feelings about Max; we want her to speak up if she's ever feeling resentful. (She's currently reading Out of My Mind, a book about a girl with cerebral palsy, and it's sparked a lot of good conversation.) Plus we've enrolled her in workshops for siblings of kids with special needs, including ones run by SibShops.

Honestly, juggling both kids' needs over the years has been relatively easy compared to what I went through after Max was born. I've often felt nothing will ever be as challenging as that time in my life. So, my friend, I'll say it again: You've got this.

Do you have suggestions to help allay this mom's concerns?

He still believes, and that's magic

Monday, I took the kids to a Disney on Ice show. Only I didn't much watch the skaters. I watched Max watching the skaters, enthralled by how completely and utterly enchanted he was (and admiring his still chub-alicious cheeks).

Max typically likes to sit in the back of venues but he grudgingly let me escort him to the fifth row of seats, a gift from The Friendship Circle. Wearing headphones helped—he gladly gave up the ever-present Fire Chief hat to put them on. The show started. Mickey and Minnie skated out. The tots sitting around us squealed. And suddenly, Max was mesmerized. Sabrina, too, which was heartening given that she's entered the eye-roll stage of life.

Max is 12 years old, an age when most kids no longer delight in watching the Disney Jr. channel, reading Little Critter books, playing with toy fire trucks or seeing Anna and Elsa skating around on ice. But Max sure does. When I surprised him with the tickets, he raised both arms up and literally said, "YAY!" When Olaf stood by the side of the rink and waved to the audience, Max enthusiastically waved back. Throughout the show, Max kept pointing to the ceiling and telling me there would be fireworks, which he knew from seeing Disney on Ice videos on YouTube. Sure enough, when fireworks went off, he gave me the most gleeful look. As we walked back to the car, he put his hands together, the symbol for "more."

It could get to me that developmentally, Max lags behind his peers. When he was little, I ached for him to catch up to other kids and tortured myself by reading the BabyCenter updates. But now I've accepted: Max is on his own timeline. What makes him happy makes him happy, "age-appropriate" be damned. I long ago stopped caring about the age recommendations on toy boxes and books. If Max is 30, 40 or 50 years old and still loving toy trucks and the whole Disney crew, then great: He will still love toy trucks and the whole Disney crew.

I'm glad to do whatever I can to cater to Max's interests, whether it's weekly visits to the local fire station, buying him lots of purple stuff (during his purple phase), going to countless car washes (during the car wash phase) or serving him a ton of spaghetti (during the spaghetti phase). I smiled yesterday when I read a story several friends shared about a Virginia 14-year-old with autism, Dylan, who is really into vacuums. His mom emailed the Kirby vacuum people (Dylan's fave brand) to see if someone would do a demo in their home for his birthday. A salesperson did. Dylan had the time of his life and he got a new vacuum, to boot. Also: Dylan knew more about the vacuum than the salesperson.

As special needs parents, we're not thinking "He's too old for that." Weird? Strange? Nah. What we're thinking is, let's try to give our kids what makes them happy. (Assuming your child is not requesting, say, that you buy him his own fire truck.)

Childhood zooms by, as moms of older kids will tell you. Those delicious days of wonder and joy are gone all too soon, times you only truly appreciate once they are history. But not for me, because Max still has that pure wonder and joy. And I'm happy to savor them for as long as I can.

Parents of kids with special needs have a dream

On Martin Luther King Day, at dusk, families around our neighborhood set out lit candles in paper bags on our walkways as a sign of unity and community. It was a beautiful sight. The kids and I talked about how he peacefully fought to change laws so black people would be treated equally.

I showed the kids the "I Have a Dream" speech King gave at the Lincoln Memorial on August 28, 1963, reading parts of it out loud, and as always I was struck by its power and eloquence. King's words resonated on another level: Parents of kids with special needs advocate for equality, rights and respect, too. We have dreams, so many dreams, about how people will treat our children and the adults they will become.

We have a dream that one day, the world will not be divided into people who are physically "able" and those who are not.

We have a dream that someday people will understand that those with physical or cognitive differences are not lesser human beings.

We have a dream that one day people will stop pitying kids with disabilities. Our children are not tragedies or "Oh, you poor things." We love and care for them not because we are angels but because they are our children, as worthy of our love and care as any.

We have a dream that people will look past the speech differences, the limp, the flapping, the screeching, the wheelchair, the walker, the cerebral palsy/autism/Down syndrome and judge our children by their personalities and character, not their disabilities.

We have a dream that people will comprehend—truly comprehend—that children with disabilities can have a rich and enjoyable existence.

We have a dream that people will no longer exclude children with disabilities from activities, programs, camp or life in general.

We have a dream that one day, more children will welcome ones with disabilities and consider them their peers, although that will not happen unless parents talk to their kids about ones with special needs.

We have a dream that our children will find meaningful jobs, even though the unemployment rate for people with disability is grim. We know we will most likely be their best hope for finding work but still, we dream of resources and opportunities.

We have a dream that inclusion will become the rule, not the exception. And not "rule" as in laws against discrimination, which already exist, but that it will happen in an organic way.

We have a dream that people with disabilities will be treated—and respected—as equals.

Parents of kids with special needs have a dream.

Better starts now, for real

Do you have the best of intentions about taking care of yourself, but somehow never really do? That would be me. I deal with biggies when forced to, like my frozen shoulder (which is now mostly defrosted). The small, everyday ways to treat myself right, though, fall by the wayside. I rarely take ten seconds in the morning to put on hand lotion. Instead of sitting down at our kitchen table and enjoying a nice lunch on a day off from work, I'll gobble something then scurry around the house doing chores. I'm more likely to be running myself ragged than going for a run. Sigh if this sounds familiar.

So when my friend Stephanie invited me to an event last week with the theme Better Starts Now, I thought: YES. Please. It's the new catchphrase for Citizen Watch, the idea that it's always possible to make something better and there's no time like the present. Ahem. A group of bloggers stood in the company's Times Square store, amidst glorious watches that run on Eco-Drive technology (as in, you never need a battery). The first watch I ever owned was a Citizen—my dad got me one for elementary-school graduation—so they tend to give me the warm fuzzies.

A string of guest experts gave better-starts-now tips. A trainer showed a few quickie exercises; a stylist demonstrated fast makeup tricks (liquid liner on your top lid is your friend); a nutritionist shared healthy snacks (Mary's Gone Crackers pretzels pack brown rice, quinoa and other good stuff and they're pretzels!); and an executive from Echo scarves showed how to tie one on. I loved the wristlet:

Scarves are exactly the sort of thing I never bother with, because a minute more in the morning tends to be one minute too much. But reality struck as I stood there and acknowledged that it takes all of 15 seconds to tie a scarf, and that life is too short to never do nice things for yourself.

This is not the part where I announce that my entire existence is going to change, AS IF, but that's exactly the point. Treating myself better is never going to happen if I think if it as something that I'll just going to start doing all at once. It's about little moves, something I should well know by know considering all the celebratory inchstones of Max's life.

I haven't done anything with a scarf yet but on Sunday morning, I dabbed some glow-you-up lotion on my face. I took a minute to twirl my curls so they looked more shaped and less like limp noodles. It took an extra three minutes and nobody keeled over because breakfast oatmeal was delayed. I didn't have anywhere particularly exciting to go, unless you consider hitting the supermarket a thrill, but I sure felt good.

Better. Starts. Now.

Disclosure: Attendees at the event received a Sunrise watch and a scarf, but the enthusiasm here is all my own.

The Special Needs Blogger Weekend Link-up: Post, read, relate!

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: Best guest post ever: It's from Fireman Max

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. 

Happy linking!

Dealing with kids' meltdowns: The mom time-out

Closing my bedroom door as Max is standing outside it, irrationally screeching about something, while knowing full well that Max can't grasp the handle to open it is: 1) Evil 2) Semi-evil 3) Necessary self-preservation.

I posted that on Facebook last weekend after Max and I had a stand-off. He'd been looking at YouTube Disney Cruise videos on his iPad. I'd set the timer for an hour and when it went off, I told him he had get off the iPad. This tactic is usually effective, but not this time.

"NO!" said Max.

"Yes, time's up!" I said, cheerfully. "An hour is a long time to look at videos."

"NO!" said Max.

So then we went back and forth for a bit. First he did The Defiancy Shuffle, a move in which he shuffles his feet and whimpers to express his disapproval. When I didn't budge, he screeched.

The screeching used to be more of an issue, particularly when we were in public places and Max was overstimulated. Now it happens once in a while when he vehemently objects to something. He knows he needs to use his words, but when he gets worked up he melts down. I think it's because he is not able to verbalize what's going through his head as quickly or as emphatically as he'd like to, which adds to his frustration. Also, because he's not getting his way.

The screeching is seriously unnerving, and causes my own meltdown. It makes my heart race, my ears ring and my blood pressure rise. So I did what I often do: I headed into my bedroom and shut the door. 

On the occasions I do this, I always feel a bit guilty. Not because I am taking a breather, which all moms regularly require, but because Max is physically unable to open door knobs. Although I realize this situation is no different than a mom of a child without fine motor skill issues physically turning the lock on a door, it always gives me pause when I hear him jiggling the knob, unable to manipulate it.

Still: I needed to decompress. STAT. And so did Max.

Max tried the knob, then he pounded on the door. And like the monsters in Where The Wild Things Are, my Max roared a terrible roar and gnashed his terrible teeth as I sat on my bed and took deep breaths.

I am evidently not alone here, because the vast majority of Facebook moms who saw my post agreed that moves like this are necessary for self-preservation.

"I've never spent so much time in the bathroom as I do now!" said Shannon F., who shared this pic of her kid hovering outside the potty door:

Deborah M. offered these wise words:

Other moms shared their own responses to dubious kid behavior. Said Jana W., "I ask my son (uses a wheelchair) if he wants to have his fits in his chair, on the floor, or on his bed then leave him to it!" Said Naomi S., "I walked out of my son's room tonight because I couldn't take the clapping and screaming stim. I just couldn't." Said Maggie M., "I've had to put Jaime in his bedroom and close the door because I couldn't take it anymore. Can't let yourself break or lose it on them!" And Erica Z., trying to assuage my concern that I was taking advantage of Max's inability to turn knobs, confessed, "I wait until my daughter turns to her one side (she's blind in one eye and visually impaired in the other) to walk past with something I'll know she wants, steal a bit of her snack, etc."

I usually only need five minutes in the bedroom to regroup. Meanwhile, Max typically walks away and when I open the door and go find him, he jabs a finger at me and gives a loud "UHHHHHH!" meaning "YOU JERK!" or whatever he is thinking, but then we're back to normal. Basically, we've both had a time out.

Jennifer H. offered this perspective: "Think of it as giving him more motivation to master that pesky doorknob! See, you are helping him, not avoiding him."

When Max is able to open doorknobs, I'll definitely be very excited...although it will mean I can no longer hide.


Image: Flickr/Andrea Marutti