Friday, August 28, 2015

The Special Needs Blogger Weekend Link-up: Check it out

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 people stare at your child

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 27, 2015

Fighting in front of the kids—and our in-house peacemaker

"He's nice!" Max informs me. He's talking about Dave.

It's morning, and I've just looked out the window and realized our car was parked on the street overnight. In our city, this is not allowed; cars have to be off the street between 2 am and 6 am unless you get special permission from the police department. Before I went sleep, I'd texted Dave—who was out late with some work colleagues—and reminded him to move the car. But, no.

"Dave, why didn't you move the car?" I ask.

"I couldn't find the keys," he says.

"Why didn't you grab the spare set?"

I shouldn't be peeved—we luckily escaped a ticket—but I am. Because it's not about the car. Are spats really ever about dealing with the car/taking out the garbage/picking up the socks off the floor/cleaning the crumbs? Nope. My irritation is rooted in division of responsibility. Occasionally, I have flare-ups of feeling the many burdens on my shoulders.

I clearly sound annoyed because Max gets an alarmed look on his face, as he always does anytime he senses I'm not pleased with Dave. His solution is to remind me how nice Dave is. Sometimes, he also asks me to say "I love you, Dave!" because he figures that'll dissolve the argument. Sabrina's tactic: whine and say "Stop!"

Dave and I have our more intense discussions about biggie issues when the kids aren't around, but we are parents of the human variety and there are times when we get irritated with each other in front of them. OK, mostly Dave gets on my nerves, because he is way more easygoing than I am.

Max, though, he wants to make sure everyone's calm and happy. And when he says, "He's nice!" it always makes me smile.

"Yes, he's nice," I have to agree. Because Dave honestly is the nicest guy I've ever known. Who neglects to move cars. And he's married someone who often neglects to cook dinner and never irons his shirts. And that's the way it is.

"Iss Ah-ee!" Max says. ["Kiss Daddy!"]

I give Dave a kiss. Max claps. And we get on with our day.

Wednesday, August 26, 2015

A new description of what Max has

"You know what I'm going to start telling people Max has when they ask?" Sabrina randomly said yesterday morning.

"What?" I asked.

"A sense of humor," she said.

"I love that," I told her. "It's a great description of him."


If only everyone could see past his disabilities—or accept them as being a part of who he is, not the whole.

Tuesday, August 25, 2015

A major deal made in the backseat of the minivan

"Maaaa-aaaaax, can I have your backpack?" Sabrina asks in the singsong voice she uses when she wants something from him.

"NO!" Max answers.

We're driving home from a program at the Friendship Circle. At the end of every summer they give participants a backpack filled with school supplies. It's yet another reason I'm eternally grateful for this organization. Max is happy with the contents but prefers to keep his good old fireman backpack, and Sabrina knows it.

He's generally a good-natured kid. But: sibling rivalry.

"What if I give you a dollar, Max?" asks Sabrina.

"Five!" says Max, and I grin.

Up until pretty recently, Max didn't care much about having money. He's been learning the different denominations at school, and now he gets allowance, but unlike Sabrina he has not gotten gleeful about collecting cold, hard cash.

Do I want Max to learn everything he possibly can? Of course I do. But there's a limit to what he can focus on at any given time and what I, as his parent, can focus on, too. At school, he's getting good instruction in reading, math, science, social studies. His homework is mostly about math, with the occasional social studies project and weekly current events and book reports.

We try to help Max better understand money when we're at stores and getting or giving change. Although like his sister, and probably many kids, Max thinks you can get everything through this magical piece of plastic known as a "credit card." (Sabrina is also in awe of Amazon one-click shopping, and it's all my fault.) In general, teaching Max about money hasn't been a priority. Which doesn't make me a lesser mom—it makes me sane.

Max is coming along, doing stuff when he's ready to. A lesson I had to learn the very hard way years ago when Max was a tot and I kept expecting to be able to make him progress if I pushed hard enough—with crawling, with walking, with talking, with everything. But, no. Max is on his own timeline, and nobody else's. It's the way it was back then, it's the way it is now.

Sabrina said, "Max, I'll give you ten dollars for the backpack just to be nice!"

Max responded, "No! Five!"

Sabrina: "Max! Why don't you want ten? It's more money!"

Me: "Max, are you just being nice?"

Max: "YEAH!"

OK, so maybe Max is too good-hearted to ever be a business mogul. But, wow, this boy wants money. Coming next: Max starts saving up for an actual fire truck.

Image source: Flickr/ota_photos

Monday, August 24, 2015

When people stare at your child

We walked into the sushi restaurant at around 5:00 p.m. We like to get to dinner before the crowds descend because it's more chill for Max. A group of waiters stood in the center of the room. I noticed one of them staring at Max. Blatantly. Her eyes followed him as he ambled to the sushi bar. She said something in Japanese to the other staffers and literally cocked her head at him. She didn't notice me watching her.

I turned on my heels and walked toward them, out of Max's earshot. "Is there a reason you're staring at my son?" I asked her, straightforwardly.

She didn't say a word. Nobody did. They just kind of stood there, awkwardly.

I returned to Max, Dave and Sabrina and we had a good, uneventful meal.

Perhaps, you say, she was thinking he was handsome. Maybe she thought he looked familiar.

No, I say. She was doing that stare-glare thing. It wasn't a kind, friendly or even curious look—those, I understand. It was a "What is up with him?" look.

Oh, how I'm glad Max still doesn't notice. Oh, how I wish I was oblivious too. Oh, how I wish I could stop caring. But I can't.

Sometimes, depending on the situation, I can get a conversation going. Like if we're at a park and another parent is looking at Max, I can just say "Hi" or "Hey" or "Some days, I can't believe how fast he's growing up!" and maybe they just say "Hi" back and stop staring or maybe it leads to a discussion about disabilities.

But when someone's so obviously gaping or gawking, when we're paying to eat out and looking to enjoy an evening together like any other family, I'm going to call someone on the staring. It's rude and unsettling, it makes my heart ache for Max, and it's nothing we should have to contend with.

One day, hopefully, Max can stand up for himself. For now, though, I'm there for him.

Friday, August 21, 2015

The Special Needs Blogger Weekend Link-up: click away!

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 people don't get about the hot model with Down syndrome

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 20, 2015

What people don't get about the hot model with Down syndrome

As the world cheers on Madeline Stuart, the Australian model with Down syndrome who just announced she'll walk the runway at New York Fashion Week, I'm cheering too. Yet I'm also feeling uneasy, because negative perceptions of people with disability are rearing their heads.

Madeline, 18, is making history in the modeling world, having landed contracts for American activewear line Manifesta and fashion accessories label EverMaya in July. This is big news—models with Down syndrome or any disability are still a rarity, although in recent years a handful have made it onto runways and more catalogs are featuring children with special needs.

Like other parents of children with disabilities, I find Madeline's success heartening and hope-inducing. It's another step toward inclusion of people with disability. It's another step toward showing people that yes, those with Down syndrome are just as worthy of modeling as any other pretty face—and acing it. As Madeline notes in her Facebook bio, "I hope through modeling I can change societies view of people with disabilities, exposure is creating awareness, acceptance and inclusion."

And then I read stuff like this tidbit from Us Weekly: "Such an inspiration! Despite having Down syndrome and other health problems..... Stuart remains completely positive and driven toward her goal." And it's clear to me that some people are floored that anyone with Down syndrome could ever accomplish what Madeline has, as if people with DS can't be talented or capable. And that they are surprised that a teen with special needs could have career aspirations. Also: WTF about the mention of her remaining "completely positive" given that she has Down syndrome? As if having DS is a tragedy.

And then there's this, from PopSugar's list of why they can't wait to see Madeline walk the runway: "#4) She loves her job. Seeing Maddie in action is seriously inspiring." Um, what exactly is so inspiring about a model liking her job? Is it so unusual for models to enjoy the work they do or revel in newfound fame they worked hard to score? Or is it that some people feel inspired by Madeline mostly owing to her disabilities? As in: WHOA! A person with (gasp!) DOWN SYNDROME pulled this off! HOW MIND-BLOWING IS THAT?! They have low (or no) expectations for people with disability.

[Deep sigh.]

Yes, yes, in the end what's happening is great. Amazing, to be sure. Madeline is raising a whole lot of awareness. But as the parent of a child with disabilities, I am acutely aware of how people still view him and others like him, and certain reactions to Madeline's story make me yearn for more progressive mindsets. My son's biggest challenges aren't just his own physical and cognitive ones, but the formidable kind posed by a society who largely believes that people with disability lack competence and potential.

I can't wait for the day when success stories like Madeline's won't be news-making because they'll be the norm.

Madeline Stuart is beautiful. She has a gorgeous smile and a captivating personality. She can reflect different moods on camera, she's got The Pout down pat and she makes clothing look good—you know, like models do. Even as people cheer her on for breaking barriers, they should be giving the girl props for achievements she's earned not in spite of her disabilities but because of who she is.

Images: Instagram/Madeline Stuart

Wednesday, August 19, 2015

7 gadgets that make family life more fun

Some are high tech, some are low tech, some are no tech—but all of these gadgets, bought or gifted to us, have made family life more fun.

Wireless speakers
The UE|Roll ($99) (for IOS and Android)

Don't be fooled but let its cute looks—this wireless Bluetooth speaker from Ultimate Ears is built tough, and won't break no matter how many times your kids drop it (trust me on that one). It's waterproof, and has 360-degree sound, a 65-foot wireless range and a 9-hour battery life. The bungee cord lets you hook it on practically anything, including a backpack. Be warned: Your kids will fight over it. Your kids and husband will fight over it. Your kids and you will fight over it.

Extreme fun water sprinkler
Banzai Wiggling Water Sprinkler ($12)

1) Attach to a garden hose. 2) Turn on water to set the 15 sprays a-wiggling. 3) Watch your kids have the time of their lives.

Popcorn maker
Hamilton Beach Party Popper Popcorn Popper ($72)

This is like having a movie theater popcorn machine in your own kitchen, and your kids will be duly impressed. It's easy: Just plop in kernels and oil (it comes with a measuring cup), plug it in and watch the pop-pop-pop start. It makes up to 24 delish cups per batch.

Shower radio
Conair Hang On Shower Radio ($12)

Aside from grapefruit shower gel, nothing gets me going in the morning like listening to the radio. We've had this kind for years. It runs on 4 AAA batteries and plays your basic radio—but I don't need much more than that, especially for twelve bucks.

Sandwich shaper
FunBites Shaped Food Cutter ($12)

This gadget (a Shark Tank winner) works well for kids with chewing issues or little ones who need bite-size pieces of sandwiches, pancakes, cheese, brownies, or basically any kid who likes to play with their food. Just put the cutter (BPA-free) on top of the item; grasp the handles and rock it back and forth till the food is cut all the way through; insert the popper top; and push down. Voila, 12 perfect pieces!
Bug microscope
Insect Lore Creature Peeper ($6.90)

The kids especially love to check out fireflies in this gizmo, which has 3x magnified views above and below. Tip: If you're a little squeamish, stay away when they catch a cicada.

Fruit fro-yo maker
Yonanas Frozen Healthy Dessert Maker ($35)

I'll admit to being skeptical of this at first, but it makes exceptionally yummy treats from berries, mangos or over-ripe bananas. You just insert the frozen fruit into the chute and push down using the plunger. It's also simple to clean—just toss parts into the dishwasher. You'll feel proud about feeding the kids healthy, no-added-sugar snacks—or downing them yourself.

Also check out:

5 summer fun activities for kids with special needs (from an OT)

Tuesday, August 18, 2015

Did you always know your partner would be a great parent?

Funny how your partner can make you swoon in a whole other way once you have kids. From the start, Dave was the sweetest, most warm-hearted guy I'd ever met and I figured he'd be a good dad.

I couldn't have imagined just how good of a dad he'd be.

Dave is incredibly attentive to both the kids, whether he's playing with them outside, escorting them to activities or just roaming around town. He gladly goes along with Max's interests/obsessions, why he has spent a whole lot of time at our local fire station with Max these past couple of years. When Max says "Eeease!" ("Please!"), Dave cannot resist even when I can ("You were just there yesterday!") When Max was in his car wash phase, Dave went to a whole lot of car washes. He is always game to find new firehouse-themed restaurants to explore.

Dave never, ever hesitates to take Max anywhere, whether it's grocery shopping or to a special program. This was especially admirable when Max used to not go to places so easily, and Dave had to weather tears and meltdowns. Dave never runs out of patience or gets grumpy (unless he is hungry, same with Max).

Dave is plenty hands-on, too. From the day we brought Max home, Dave changed diapers. "Wow, that's a man-size poop!" he'd boast. He helps Max in the shower. He helps him at meals. And while he has always said, "I don't do clothing!" some days he ends up dressing Max and sometimes the clothes even match.

His other nickname besides Marshmallow Dave is PDA (Public Dave Affection) because he is full of hugs and kisses. Nothing makes me melt like watching him lavish the kids with love or seeing one of them snuggling into him when they're not feeling well or tired.

So, yes, when you're dating someone you think you can tell what sort of parent they'll be. Obviously, neither of us could have known just what kind of challenges would lie ahead. Dave has lived up to them all. He is the father I dreamed of, and more.

Monday, August 17, 2015

My thoughts on the new baby: a guest post by Sabrina

I am really excited for the new baby. Mommy got a new bookshelf and everything! I’m very excited to dress the baby in cute clothes. Mommy said when the baby gets older it might move to my room and I’ll have to move to the attic. I think the attic's big but I’ll be far away from my parents room.

I also think that my new brother will get a lot of attention, not so happy about that because I like attention, but my Mommy said she has enough attention to give to everybody.

The thing I’m not happy about either is that my little brother will cry and scream a lot. Even though I’m used to it, it will be very crazy, i don’t think we will make it through one dinner out. Anyway I think the baby will have a fun time with Max and me.

The thing is that Max and I used to have a lot of toys and big giant toys like train tracks and we gave all of it away and now we have to buy all over again but that's fine with me. Overall I am really excited about the baby! Oh! I forgot to say I will be writing for Mommy while she’s taking care of the baby in the hospital.

Friday, August 14, 2015

The Special Needs Blogger Weekend Link-up: Just do it

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: Amy Winehouse's death was a tragedy, my son's life isn't

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 13, 2015

Why aren't more people with disabilities on America's Got Talent?

My friend Wendy texted last night asking if I'd seen the comedian on America's Got Talent who stutters, Drew Lynch. I gave up on the show a couple of years ago, so I checked him out on YouTube.

Lynch, an aspiring actor, got hit by a baseball bat and sustained damage to his vocal chords that resulted in a permanent stutter. He's a funny guy; here's his recent riff on his service dog:

Lynch is one of seven contestants advancing to the semi-finals, but it's rare to see people with disabilities on these talent shows (or, really, on TV in general). I loved watching Jack Carroll, who has cerebral palsy, on Britain's Got Talent a couple of years ago. He also used his disability in his act because, as he said, "In comedy, a lot of time, your weaknesses are your strengths. It's like the elephant in the room and then when you mention it, they go [exhale] and they can relax and enjoy the rest of the funny jokes."

It's awesome to see them. And it would be equally awesome to see a person with a disability on a talent show who doesn't have to spin his entire act around it to put people at ease. That likely won't happen anytime soon because a whole lot of people are still uncomfortable with people who have disabilities.

Consider PKN, the Finnish punk band. Its members play some bad-ass music...and they just happen to have Down syndrome and autism.

Image of Lynch/NBC

Wednesday, August 12, 2015

Amy Winehouse's death was a tragedy, my son's life isn't

Dave and I saw Amy the other night, the documentary about Amy Winehouse. It's a powerful movie, the kind that leaves you sitting in the theater till the last credits roll, absorbing what you just watched. We knew the ending, of course, but not the events leading up to it—or the struggles that were the basis for many of Winehouse's songs. The film gives a good look at the vivacious, funny and super-talented woman behind the headlines and infamous addictions.

"Her death was a real tragedy," Dave said in the car ride on the way home, and I agreed.

That word. Tragedy. It's what people thought about Max after he had a stroke at birth. Heck, it's what I thought as I sat in the NICU beside the incubator that held an unconscious Max. How could this have happened to a baby?, I thought. The pediatric neurologist and neonatologist, aka Dr. Doom and Dr. Gloom, only spoke of the potentially worst outcomes, exacerbating my grief.

After Max came home, we had a baby naming party. A friend who unexpectedly lost two parents within a couple of years of each other leaned over to me in my kitchen that day and said, eyes filled with tears, "I've been through a lot, but what happened to you is worse." It was meant with kindness and empathy, but hearing that made me despair more during what was already the bleakest time of my life.

And then, there was Max, an exceptionally smiley, chubby-cheeked baby who cheerfully endured therapy sessions and basically charmed everyone who got to know him. A child who kept on progressing, slowly but surely, on his own timeline. By the time his first birthday came, I was no longer in mourning for the child I hadn't gotten; I could enjoy the one I had.

While what had happened to Max was shocking and awful, ultimately it wasn't a tragedy. Max is a sweet, loving, ebullient, bright, motivated kid with challenges that are more apparent than ones other people have. I am lucky to have him.

I know that some see his disabilities, even him, as a tragedy. Perhaps I would feel the same about a child with disabilities if I'd never had a child with cerebral palsy. I get lovely, concerned emails from people offering to say prayers for him. Like many parents of kids with special needs, I am all too familiar with The Pity Stare. But tragedy? No.

Tragedy is a family member stricken with disease. Tragedy is a child dying of cancer, as has happened in our community. Tragedy is a fatal car, train or plane crash or any serious accident. Tragedy is a catastrophic natural disaster and its victims. Tragedy is 9/11, Sandy Hook, anyone whose life has been taken by a raging gunman and people including Eric Garner and Robert Ethan Saylor who were killed by authorities. Tragedy is the murder of beautiful souls like Kayla Mueller who venture into areas of conflict and war zones to do good. Tragedy is a talented singer done in by fame and her own demons.

There are all kinds of tragedies in this world. My son, he isn't one of them.

Image source: Flickr/Mick O

Tuesday, August 11, 2015

Embrace the mess


"Embrace the mess" is generally good advice for parenthood, whether you're talking about things not going as expected or the state of your playroom. I've never been particularly good about heeding that, as I like to pretend I have control over more things than I do. But life in general has gotten a bit messy these last few weeks, and I've been mostly fine.

Juggling planning for the baby and planning Max's bar mitzvah have been consuming. I also have a mild case of pregnancy brain that has me doing things like blurting "Where's my phone?!" as I'm holding it. Then our kitchen renovation started yesterday. The one we've been saving up for, the one we decided to still forge ahead with after I got pregnant, the one whose start dragged on until we found a good contractor (finding a good husband was way easier) and pinned down the cabinetry (semi-custom, from StarMark Cabinetry) and the kitchen design. We're redoing the powder room, while we're at it. We figure that after the baby comes we won't have the time or energy.

We spent the weekend packing up the kitchen, piling up boxes in the living room and front entryway and turning our dining room into a kitchen. Our kitchen is right above our furnace/storage room and the contractor said dust would get down there, so we had to move out a bunch of stuff into the finished area and cover up things with tarps. Good times.

We still have to pick out all the usual renovation items—cabinetry hardware, lighting, tiles, flooring. In theory, that should be fun except there are a bazillion choices and when I ask Dave's opinion he says, "Whatever you want, honey!" so I'm on my own. I found some reasonable knobs and drawer pulls at Home Depot, and a couple of splurge-y fixtures at Restoration Hardware. Someday, I'd like to rent a room in that store and live there.

I'm feeling a little overwhelmed but still, remarkably calm about the chaotic space formerly known as our first floor and the dusty area that was our kitchen. Perhaps the pregnancy hormones are helping. Perhaps it's the fact that I grew up in a very cluttered apartment (my dad was a bona fide hoarder) and part of me is used to it. Perhaps it's that I've gotten us into this fine mess and have no choice but to deal. Embracing takeout and meals that can only be microwaved: That's not too hard at all.

Monday, August 10, 2015

Kid goes to camp, kid may never want to come home

So you send your kid off to sleepaway camp. He's been to one before, but it's a new camp and it lasts for longer than he's used to. He was really psyched to go and he's generally gotten more independent but still, you're a little concerned about how he'll do. You even tell the camp director you're not sure you should call him weekly because you don't want him to get upset by the sound of your voice.

When you drop him off, he's excited and not the least bit upset to say goodbye. You have trouble letting go when you hug. As you walk to the car, you keep turning around to look at him walking off with his counselor; he keeps turning around, too, and you keep doing that till you can't see him anymore and you feel really, really sad.

On day 2, you text the camp director see how he is doing. The camp director calls. Uh-oh. Actually, your kid is content but he doesn't want to do any of the activities, he just wants to walk around. She asks if you think he's just getting the lay of the land. Ummm.... You're not sure what's up because sometimes he just likes to do his own thing but you agree, he's exploring.

And the next thing you know, you see photos of your kid looking nothing less than ecstatic—playing with other kids, bowling with giant plastic pins and a giant plastic ball in the hockey rink, driving a golf cart, at an amusement park. In his ever-present Fire Chief hat, of course.

Then one morning your cell phone rings and it's a number you don't know and you pick up and it's a counselor saying that your son, Max, would like to say hello to you. In the background you hear, "No, Ire-ahn Ax!" And then:

"Hi, ohmmy!"

And your heart does flip-flops and you say, "Hi, Fireman Max!" And he tells you the activities he's been up to and that he's playing with kids and eating lots of pasta and cheese. He says something you don't understand and he says it again and again and still you don't get it and you feel awful. But he types it out on his speech app for his counselor, who relays that they saw the movie Big Hero 6.

And you say, "Oh, you love that movie, it's so funny!"

"Eee-yah!" he says.

"Are you having so much fun?" you ask.

And he says, "Eee-yah!" And then, he's got places to go and things to do and he says, "Eye, ohmmy! I uh ooooh!"

"I love you, Fireman Max!" you tell him.

And he hands the phone back to the counselor.

Your boy. At camp. Having the time of his life, without you.


Top image: Flickr/Peter Blanchard

Friday, August 7, 2015

The Special Needs Blogger Weekend Link-up: Share your posts here!

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 the worries go away

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 6, 2015

Crowdsourcing: OK, how do I handle this one?

"Max, are you OK?" I shouted from upstairs. It was morning and Max had gone downstairs to watch TV. 

No response. I repeated myself. No response. 


"Fireman Max, are you OK?" I shouted.

"YEAH!" he said.

These days, Max only responds to "Fireman Max" when he's around us. If friends or family call him "Max," he'll correct them. When he meets someone new and they ask him his name, he says "Fireman Max." At school, he's still "Max" although he does sometimes write "Fireman Max" on his homework. 

I'm planning Max's April 2016 bar mitzvah, and one thing I'd like to do is get him a kippah (a traditional head covering) imprinted with a fire truck and his name. (And, yes, the theme of the bar mitzvah is fire trucks and we'll offer guests red kippot.) I found the above fun version at Kippah Corner. I am also thinking of having someone needlepoint one; a high school friend who lives in Israel found a lady who can do it for me. 

So here's the dilemma: Do I get "Fireman Max" or just "Max" on the kippah? I am torn. If I ask him, I know exactly what he'll want so I haven't yet gone there or discussed design choices. We have already talked about his wearing the Fire Chief hat, and he has agreed that while it will be at the bar mitzvah he won't wear it. I am dubious. But if he's psyched about his kippah, perhaps it won't be an issue.

The thing is, it seems only fair to have Fireman Max on his kippah because that is how he IDs. 

Still: I do not want him to seem baby-ish at a ceremony that celebrates a boy's coming of age. I don't want anyone feeling sorry for a 13-year-old kid who calls himself by a little kid name. 

And yet: Max is who he is, and I have always treated him accordingly, not caring whether he acts younger than his years in private or in public. He certainly could care less, and this day is about him, not me. Besides, not many things about the bar mitzvah will be traditional (my need for cocktail franks aside). Max is not going to read from the Torah, for one. I've found a music therapist to work with him on making up a song they will sing together, along with a couple of blessings. No, following customs isn't key; what is important to me is creating a day that's meaningful to Max. Which makes me lean toward Fireman Max on his kippah.  

Sure, I could hedge my bets and have two different kippahs made, one with just "Max" and one with "Fireman Max" but if I show him both I am 100 percent sure which he'd choose. There would be no negotiating (say, he wears "Max" in the sanctuary and "Fireman Max" at the party that follows) because I'm sure he wouldn't go for it. Even if he agreed, on the day of he might refuse and I sure do not want to be doing kippah battle at his bar mitzvah when there are hors d'oeuvres to gorge on.  

What say you, wise people? 

Image: Kippah Corner

Wednesday, August 5, 2015

9 summer fire safety tips for outdoor fun

If your kids are like my kids, they will eat practically anything you throw on a grill. Hello, veggie kabobs! Cooking (and eating) outdoors is one of summer's greatest pleasures—you just want to keep some key summer outdoor fire safety tips in mind. As ambassadors for Kidde, Max and I are here to share the biggies with you:

Grilling at home

Three words: Clean the grill
Given that my husband is our house grillmaster, and given his—shall we say—lack of interest in all things involving cleaning, our grill buildup gets pretty gross as the summer months go by. Not. Good. One important safety tip from the National Fire Protection Association is to regularly remove grease and fat buildup from grills and the tray below; ideally, you do so after each use. Sometimes, if you ask around you can find a local handyman who specializes in cleaning grills. We hired someone to do ours a couple of years ago, and our grill looked (and worked!) like new.

Dress right
Avoid clothing with apron strings or hanging frills (not an issue for most husbands), recommends Kidde, and use flame-retardant mitts when adjusting hot vents.

Keep the kids away
You want a three-foot safe zone around both grills and campfires, per the Federal Emergency Management Agency (FEMA).

Store that spare in a smart place
Never store a spare gas container under or near the grill or indoors—it's a fire hazard. You also want to avoid keeping a filled container in a hot car or trunk, as heat will cause the gas pressure to increase which could open the relief valve and allow gas to escape.

And one thing you so do not want to do…
…ever ever ever is operate a grill indoors or in a garage. Carbon monoxide (CO) is produced anytime fuel is burned, and you do not want to risk CO poisoning. Every year, some 430 people die in the U.S. from accidental CO poisoning, per the Centers for Disease Control and Prevention. Also be sure to keep the grill away from siding and deck rails, too.

Building fires when you're camping

Four out of five forest fires are started by people, per the U.S. Department of Agriculture Forest Service. But, as Smokey Bear will readily note, only you can prevent wildfires. Check out these campfire tips, courtesy of Kidde and other pros:

Check on restrictions
Before you even think about starting a campfire, ask rangers or the campground office about restrictions, especially during the arid months of summer when vegetation can run dry.

When you start a campfire…
Do not use gasoline. Ever. Also, build campfires at least 15 feet away from tent walls, shrubs and other materials that burn, per FEMA.

Play it safe inside the tent
Use only battery-operated camping equipment including flashlights and lanterns. Avoid liquid-filled heaters or lanterns, matches, candles, open flames or a BBQ grill as they can produce deadly CO.

Keep dirt and/or water handy
You should extinguish the campfire before you snuggle into your sleeping bag. Use a fire extinguisher when a fire is small and contained, and only after the park ranger has been notified of the fire. Good to pack with your camping gear: a multi-purpose extinguisher that's not too heavy to handle, like this Kidde one.  

Have a great, safe summer!

For more information, check out: 

Kidde on Facebook
@KiddeSafety on Twitter
@kiddefiresafety on Instagram

This post is one in a series sponsored by Kidde, for whom I am a compensated ambassador. 

Image source: Flickr/philippa mckinlay

Tuesday, August 4, 2015

When the worries go away

Max is sleeping like he usually does: On his side, one hand resting on a shoulder, the other curled beneath a pillow. There is no greater special needs parent therapy for me than watching him at rest. 

He looks even younger than he does when he is awake, his cheeks puffed up. The years of Little Max return to me. Watching the kids sleep is the closest I come to going back in time and seeing them once more when they were little.

Asleep, Max's body is relaxed; often when he's awake, his fingers and arms tighten, the cerebral palsy doing its thing. Gently, I'll pick up one his hands and hold it in mine, the warmth infusing me with peacefulness. I'll listen to his breathing, soft and even, and feel grateful he's getting good rest. His body works so hard. 

Lately, I've been lying awake in bed in the middle of the night, thanks to pregnancy insomnia. My mind inevitably drifts to Max, and the worries that bubble up by day emerge in full force. He wants to speak so badly and while there have been some articulation improvements, he still struggles with a lot of consonants. The best I could convince his school after that dismal IEP encounter with his speech therapist was to add one articulation goal to his IEP; for the most part, she is focused on language and his speech app. They are the most facile means of communication for his education, she and the district have told me. But then: What about the rest of his life? What about the fact that he wants to express himself by talking?  

Max's chewing is not progressing much—he mainly eats soft foods, crunchy or chewy ones aren't feasible because of chewing/oral-motor coordination challenges—and it's looking like I need to add feeding therapy to his repertoire of therapies, and perhaps enlist an advocate to make sure the school is doing its part to prevent him from choking. 

I worry about the insurance coverage, as we've hit the proverbial "You only get 30 speech therapy sessions a year through your coverage" wall and now we have to appeal. 

I worry about making sure he gets enough attention once the baby arrives. There is only so much of me and Dave to go around.

When Max is sleeping, though, I'm not thinking about any of that. Because he is just a sleeping kid and I am just his mom, focused on the beautiful child in front of my eyes. 

Monday, August 3, 2015

Americans still don't get why the word "retard" hurts

Like many parents of kids with intellectual disability, over the years I've repeatedly explained why the words "retard" and "retarded" are offensive to people with ID and those who love them. My friends and family understand. Strangers in social media, not so much. It's not just the expected haters, but the people who take the freedom-of-speech stand and those who just. don't. get. it.

That's become painfully clear, once again, with the recently released Shriver Report Snapshot: Insight into Intellectual Disabilities in the 21st Century, which surveyed 2,021 adults ages 18-plus in the United States. On the upside: Millennials (ages 18 to 34) are more likely than their older counterparts to know someone with an intellectual disability and have an understanding of what it means to have ID. Millennials are also open to having their children live near and go to school with people who have ID, and date and marry them, too.

Also gratifying: 89% of Americans agree that calling someone with Down syndrome or autism a "retard" is offensive. They even find it offensive if the word is directed at a stranger who does something foolish. And yet: 56% believe it's OK to describe themselves that way after making a mistake and 38% say it's fine to call a friend a "retard." The point that the words—no matter who they are directed toward—perpetuate negative stereotypes of people with ID is lost on them. 

Four years ago, I did a Twitter experiment in which I tweeted at people using the hashtag "retard." The word seems to be less common on Twitter these days, but it's still being used in a derogatory way. A recent sampling:

I realize I lack objectivity, but still: How is it possible to argue that the word doesn't demean people with intellectual disability (once known by the old clinical "term mental retardation") when it's clear that people sub in "retard" and "retarded" as slang for stupid, incompetent, foolish, losers, lazy and worse?

Sometimes I tell people: Put the name of your partner/child/relative/friend in place of the word "retard." Do you get it now? 

Cleveland Browns quarterback Joe Haden, the first NFL player to be a Special Olympics Global Ambassador, gets it. He has a younger brother with cognitive impairment, and has spoken out about the-word. As he told ESPN the other week, "Open up your vocabulary, people. The R-word is hurtful, hateful and ignorant. Like the N-word, it should not be part of our language."

Open up your vocabulary, people.  

More about this:

Would you call my child a retard?

20 reasons to respect my child with special needs

Do you get why this word hurts so much?

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