Thursday, December 31, 2015

The 2015 Love That Max year in review

In January, I ran my favorite post of all time: a guest post from Max. As I mentioned, when I started this blog I couldn't have imagined Max would type out his thoughts, but he did. Also: A shell creature got the best of me.

In February, Max started asking if we were OK, I refused to help him (for his own benefit) and I attempted to take back the hospital where Max was born.

In March, Max waved his hands in the air like he just didn't care—a reminder to us all; I pointed out how Max is doing a good job of raising me; and I discussed how to respond when someone uses the word "retard" without using the phrase "My name is Inigo Montoya, prepare to die!"

In April, the kids made a big announcement about our family, I was grateful for this girl's small act of kindness, explained why "uts" is an amazing word and discovered 22 freebies, services and grants for kids with special needs.

In May, I swooned when Max drew a heart for the first time. Plus, I summed up special needs motherhood in GIFs.

In June, I pondered the amazing things I saw in a video of Max and what he would teach his new baby brother.

In July, I shared 10 emoticons for special needs parents and felt grateful that Max appreciates the little pleasures in life.

In August, Sabrina wrote about her baby brother to be, I mouthed off about a staring incident and what people didn't get about the hot model with Down syndrome, and mused on the time of day when the worries go away.

In September, I melted when Max sang "When You Wish Upon A Star" in music therapy, pondered the progress and explained what not to expect from your child with special needs.

In October, Ben!!! Who brought a whole new level of love to our family.

In November, Max read The New York Times, overcame his fear of stadiums and went to a Jets game and helped out around the house and with Ben. Also, oopsie, my head exploded at the pediatrician's.

In December, I revealed yet more things heard around our house, shared a story about a father of a boy with Down syndrome who helped open a teaching hotel for people with disability and celebrated the OMG moment at our back door.

Wishing all of you a happy, healthy, progress-filled, fun, low-drama, sane-ish and satisfying New Year. And enjoy your children. If yours has special needs, I know just how it feels like to want him to mature and to wish you could speed up time but they are only little once—savor it.


Wednesday, December 30, 2015

A teaching hotel for people with disability opens, thanks to one dad's dream

As parents of kids with special needs, we want to give our children every opportunity and empower them in every which way. When the resources are lacking, we may dream of making them happen— only a bazillion other responsibilities and to-dos get in the way. I've definitely been there, not done that.

This is the story of a father who made his dream a reality; thanks to him, the country's first teaching hotel for people with disabilities just opened. The Marriott Courtyard Muncie at Horizon Convention Center in Muncie, Indiana, will operate as a regular hotel while giving staffers the opportunity to learn the hospitality trade.

Jeffrey Huffman, a businessman who runs a healthcare and disability consulting firm, is dad to Nash, a 14-year-old high school freshman. Nash has Down syndrome and as he got older Jeff and his wife, Jan, were concerned that, as Jeff puts it, "Success after high school was not being addressed well in Indiana." The couple became active in The Arc of Indiana; its Blueprint for Change aims to build career pathways for people with disability, among other goals.

"That process got me thinking about how we could pull this all together in our hometown of Muncie, where Jan and I grew up," Jeff recalls. "There was an abandoned hotel in downtown, and with cigar and bourbon in hand I went to work on sketching out my thoughts on a real live business that employed and trained individuals with disabilities for real jobs in restaurants and hospitality."

He brought his paper napkin idea to The Arc because, he says, "I knew we could not pull it off on our own. At first they thought I was crazy to tackle such a big idea...but then it stuck. The old hotel ended up being sold but we had sold the city and the state of Indiana on the idea and with land and a $5 million dollar grant from the state, we were off to the races."

At least 20 percent of the staff of the Courtyard Muncie will have developmental and other types of disabilities; they'll work at the front desk, in housekeeping and in the hotel's eateries, reports Disability Scoop. The hotel also features a training institute for teaching vocational skills in hospitality, food service and healthcare, which The Arc hopes hotels around the country will replicate.

"It's really cool to be a part of this," Nash told a reporter on the hotel's opening day, when he helped cut the ribbon at the ceremony. "I want to work here."

"Jan and I feel we have the obligation to stand on the shoulders of the parents who came before us and gave us what we have," says Jeff. "As a disability movement, we must move forward on innovation to increase education that leads to employment options and independence—not just more services.

"The hotel is just one dream. We need more ideas and dreams, and I hope this serves to show that anyone with a dream big enough to make positive change can do it with the right partners."

Images: Jeff Huffman/Facebook

Tuesday, December 29, 2015

We are THAT family on vacation

When your child, who is seemingly having a great time at the dude ranch where you are on vacation, repeatedly tells you he doesn't like it because it is not Disney World.

When he asks you to call Animal Kingdom Lodge at Disney to inform them that he will be coming there soon.

When you call Animal Kingdom Lodge and ask the nice lady who picks up the phone to say hello to your child and to please address him as Fireman Max.

When your firefighter obsessed child discovers there's a firefighter staying at the resort and decides he'd prefer to hang out with that guy's family.

When your fire truck obsessed child, whose favorite truck is number 31, makes a beeline for table 31 in the dining room and stands there expectantly and you sheepishly apologize to the family seated there for bothering them and explain that your son's favorite fire truck is number 31 and would they mind if he borrows the placard and they kindly agree and he takes it and places it on his table (formerly number 90).

When he keeps doing that at every single meal.

When the dining room hostess has the number 31 placard waiting for him when your family arrives.

When your child wants to still celebrate his birthday two weeks later and the wait staff cheerfully indulges him and afterward his sister informs him, "MAX! It's called a birthDAY because it is ONE DAY!"

When your child decides it's amusing to pat the butt of the character horse circulating around the dining room.

When your child follows the character around and makes his way into several other families' photos until you realize it and draw him away.

When your child amazes the waiter by the amount of stuffed shells he consumes in one sitting (eight very large, very stuffed shells)—and then further amazes him by downing a gigantic bowl of chocolate ice cream.

When your daughter decides to have a giant bowl of whipped cream for dessert and you let her.

When your child's favorite activity, next to horseback riding, is riding the elevator to the floor below as you run down the stairs to meet him, and then taking it back up again. And he claims his two-month-old brother really likes doing that, too.

When your child sobs inconsolably as you check out of the resort because he had such a fun time.

When your child gets home and insists he can't unpack his suitcase because it is needed for Disney World.

Monday, December 28, 2015

Sometimes, you have to let go

Max wailed—he didn't want to get on the horse. We were at Rocking Horse Ranch in Highland, New York for a few days last week, and he had told us he was psyched to go for a horseback ride. Now he was having second thoughts, but I wasn't letting him back down.

Sabrina couldn't wait to get going
Max used to do hippotherapy when he was little, horseback riding used for physical, occupational and speech therapy. It helped encourage him to grasp (since he needed to hold onto a bar for stability), it got him to better balance his torso, it built up core strength, and it gave him good sensory input. So he wasn't exactly a stranger to horses, although it had been a while since he was on one. He gets like that at times—he says he wants to try something but when push comes to shove, he wants out. 

"Max, I know if you go for a ride you'll like it," I said.

I'd spoken with TJ and Scott, the stable managers, and they had been completely receptive to accommodating Max—they said they were used to working with kids with disabilities. Two wranglers stood by to help Max get onto the horse. I helped them get one leg in a stirrup and then up and over he went, sniffling sadly. They lead Max off for a walk around the corral; when he came around toward me he had a big smile on his face, helmet slightly askew but looking good. Nobody was holding his arm, which I thought was strange—he needed support. Or at least I thought he did.

"More!" he said. Only one of the staffers was walking away.

"Wait, don't you need both of you for a ride?" I asked.

"No, he's good," said the wrangler leading the horse.

"Er, OK," I said, dubiously. My heart beat faster as Max moseyed away.

"Please make sure he stays balanced!" I shouted and the guy nodded. I felt a strong urge to yell "STOP!" because I was so scared Max would fall off the horse without hands to hold him up.

I did not tear my eyes away from them the entire time they were on the walk, this time a longer one down a path. Max has pretty good balance but all the way up there? As the horse, gentle as it was, swayed him?

It wasn't Max who had lost his nerve, it was me. I am used to being there for him—too used to being there for him, perhaps.

When they returned, Max had an even bigger grin on his face. Relief flooded through me. His body was a wee bit off balance but he looked comfortable up there, secure and proud of himself.

Over the next few days, Max took several more rides and he held the reins; a staffer held onto the horse but Max steered. The highlight of our stay was when Max and Dave went out for a ride, because there's nothing more Max loves than an adventure with Daddy.

Like two cowboys on the range, they ambled off and I watched, happily.

Thursday, December 24, 2015

The Special Needs Blogger Weekend Link-up: Happy Holidays edition

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: Exactly how to prevent your kid from driving you bonkers

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Wednesday, December 23, 2015

Heard at our house this week: the saga continues

"I just went to put on his hat and I touched his head a little hard. If I hurt him do you think he would have cried? Is all of his head soft? Do you think he's OK? Can you put on his hat?"—Dave

"When can I hold him standing up? Don't you trust me? I am very responsible. I just got 100 on my spelling test!"—Sabrina

Me: "What do you get when a breastfeeding mommy jumps up and down and then feeds her baby?" Kids: "What?" Me: "A milkshake!" Kids: [Stare at me blankly.]

"Hi, mooshie! He looks like such a mooshie."—Sabrina

"He looks like ME!"—Max

"He seems to really enjoy pooping. You can just tell."—Dave

"Ay-ee's eye-ing! Eh im!"—Max ["The baby's crying! Get him!"]

"When I was carrying him before I wasn't carrying him with two hands, I was mainly holding his chest in my arm, do you think he's OK?"—Dave

Me: "Does he smell like spit up?" Sabrina: "I think he smells like flowers."

"Honey,  I know he's not crying but he looks hungry."—Dave [Repeat variations of this 10,000 times]


"I think he is eating too much!"—Sabrina

"Ehn eyes ooh ea!"—Max ["Ben likes to eat!"]

"I love how his belly button swirls. It's like a designer belly button!"—Sabrina

"I think he needs to do more face time."—Dave (He meant tummy time.) 

Me: "I would just like to let everyone know that I am going to go take a five-minute shower and I am hoping you all survive without me. Dave, the baby is NOT hungry."

"Wouldn't it be great if diapers changed themselves?"—Sabrina

"Eye? Me?"—Max ["Did I cry a lot when I was a baby?"]

"Honey, I was sure I turned the flash off before I took a picture of the baby but then the flash went off! I couldn't believe it! Do you think it hurt his eyes? Is he OK?"—Dave

"Maaaaaaaax, don't touch his head, just his hand! Be gentle! He's just a baby!"—Sabrina

"Ben could be the President of the United States someday. I may be holding a president!"—Dave

Previous and similarly exciting editions of Heard at Our House:

Heard at our house this week, continued

The original

Tuesday, December 22, 2015

Exactly how to prevent your kid from driving you bonkers

Since I've been home full-time after having Ben, Max has developed a certain habit. As soon as he returns from school he asks, "Is Daddy coming home now?" And then, he asks dozens and dozens more times as the night wears on, and I am not exaggerating. I'm not taking it personally—I love how much he worships Dave. I just need him to quit asking when he is coming home.

It doesn't matter what answer I give, whether it's "Daddy will be home later" or "Daddy will be home at 7:00" or "Daddy has to work late tonight." Still, he wants to know: "Is Daddy coming home now?" And he knows full well what the words "now" and "later" mean, and he understands how to tell time.

My friend Peggy put a name to the behavior: perseveration, defined as a tendency to repeat words and phrases and not be able to shift gears. Max's fixations come and go. Most recently, he was stuck on "I want to be a fireman when I grow up." He's no longer saying that; he just wants to know if Dave is coming home now.

I've tried different tactics. For starters, I've showed him on several clocks what time Dave was due home. And still: "Is Daddy coming home now?"

I've tried to reason with him:

Me: "Max, you just asked me that! What did I say?
Max: "Later!"
Me: "Right! Daddy is coming home later."
Max: "Is Daddy coming home now?"

I've tried to ignore him ("Max, I am not answering that question again!") but still, I am forced to listen to "Is Daddy coming home now?"

Lately, Max is into the Magic 8 Ball. So one night, I tried to get him to refer to it for answers. 

[Me, shaking Magic 8 ball]: "Is Daddy coming home now?"
[Magic 8 ball]: "Don't count on it."
Max: [Starts tearing up.]
Me: "Max! You know it doesn't give you real answers, it's just for fun! Daddy's coming home soon! OK, let's ask it again. Is Daddy coming home now?"
[Magic 8 ball]: "Very doubtful."
Me: [Gives up]
Weepy Max: "Is Daddy coming home now?"

Then I recorded an answer in a video, because I figured that he could just watch it repeatedly to get satisfaction. I said, in perhaps the most boring video of all time, "Daddy is coming home at 7:00." Max watched it a few times. Then he asked, wait for it, "Is Daddy coming home now?

It was Max who came up with a solution that sometimes helps.

"Is Daddy coming home now?" he'll muse out loud.

And then, he answers himself.

Image source: Reflections of The Scream/Roy Lichtenstein

Monday, December 21, 2015

The force: It did not awaken

One of the pleasures of parenthood (aside from napping children) is introducing your kids to the same stuff you enjoy, especially the things you were into when you were their age. In the last week, I have watched Star Wars mania erupt in full force among my friends' families. They and their kids have been dressing the part. One mom made Woookiee Cookies. And a whole lot of parents purchased theater tickets in advance of the opening weekend of Episode VII.

I've anticipated The Force Awakens, too. I figured we'd show the kids the first three Star Wars episodes (we have the DVD set) then take them to the movie in an upcoming week; Max wouldn't do well with the hordes of crowds descending on theaters now.

I can still vividly recall my dad bringing me and my sister to see Star Wars when it opened; we were all dazzled by it. Dave and his dad saw it eleven times, so he was even more psyched to introduce Max and Sabrina to it.

And so, without fanfare, this weekend we gathered in our living room to watch A New Hope. Max sat on Dave's lap, Sabrina lounged under a throw and Ben ate and didn't nap, as usual.

The kids seemed interested. Dave and I interjected occasionally, explaining to Max that the men in white armor were Bad Guys and that Princess Leia was hiding plans in R2-D2 that could help save the good people.

Right when R2-D2 sets off from Uncle Owen's compound to find Obi-Wan Kenobi, Sabrina started doing gymnastics around the living room. Not a good sign.

"Max, do you like the movie?" Dave asked.

"NO!" Max said, without hesitation.

Ben seemed rather blasé about the whole thing.

So that was that. Dave was a little disappointed, but I wasn't. Of the two of us, I was the one most likely to regret it when Max was younger that he couldn't enjoy typical childhood stuff like clambering around playgrounds or just holding his own ice-cream cone. I had to learn to accept that every childhood plays out in its own way, and you need to let go of the things you wish your children could do or enjoy but don't. It doesn't mean they have lesser childhoods.

Later that day, both kids went to a drop-off party at The Friendship Circle and me, Dave and Ben headed out for a sushi date night. When we picked up Max and Sabrina, they were giddy.

"Mommy! They had acrobats!" Sabrina said.

Not only that, but they'd spun plates on sticks and Max had volunteered to go up in front of the crowd with some other kids and try his hand. And he did it, with the help of a boy standing next to him. My friend June sent some photos.

So the kids were entertained as they wished to be, and it was all good. We're not giving up on Star Wars; maybe we'll try showing it to Max and Sabrina again in a few months. Although in the words of Yoda, "Do. Or do not. There is no try."

Thursday, December 17, 2015

The Special Needs Blogger Weekend Link-up: Put 'em up!

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: There are no perfect kids here

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. 

Bulldozing our kids out of their comfort zone

"Max, can you go get the American cheese yourself?"

I am sitting in the dark living room, nursing Ben and hoping he'll fall asleep. Max likes to have a piece of cheese at bedtime and he wants it now. Only I don't want to disturb Ben.

"No!" Max informs me.

That's his typical response to being asked to do something I usually handle for him. Because it's easier to let me do it, and because Max is an extreme creature of habit. He likes things done the way they've always been done. And I am the getter of the cheese. But not tonight.

It's more important than ever to help Max strive for independence. He's getting older, he'd be more capable if he'd just try and also: Ben. There's less of me to go around. And while I'm there to help Max with the hand movements that still elude him, like pulling up the back of his pants or shampooing his hair, I need to encourage him to help himself.

"Max, I know you can get the cheese," I say. I'm not letting him get out of this one. Sometimes, I don't just need to push Max, I need to bulldoze him.

He gives me an impish look and walks to the kitchen. I see him standing in front of the fridge.

"Two hands, Max!" I remind him, a constant refrain in our home. Since Max's left hand is the better functioning one, he has a tendency to want to do everything with it and ignore the right. Happily, I see him opening the fridge doors with both hands and darting a look my way to see if I'm watching him.

Over the years I've discovered that Max doesn't like me to know just how able he is. Our classic story about that is the time, years ago, when I stopped by his school at lunchtime for a surprise visit. Back then, Dave and I regularly fed Max all his meals. And yet there was Max sitting at his desk and cheerfully spooning pasta wheels into his mouth.

I hear rustling. Max has to take a cellophaned slice of cheese out of the package, which he should be able to do because he has a basic pincer grasp—picking up small objects using your thumb and forefinger. Babies develop it before they're a year old, but the cerebral palsy got in the way for Max. The grasp has emerged over the years and now, if he really focuses, he can swing it.

And then Max is walking toward me, and not only does he have the piece of cheese but—bonus!—he has ripped off a piece of paper towel.

"Wow, Max! You got the cheese!" I whisper, excitedly. "AND a paper towel!"

Max grins, proud of himself.

Another small independence victory that actually doesn't feel small at all.

Wednesday, December 16, 2015

Teaching kids with special needs sex ed: group therapy

"I am needing sex education resources so I can teach my 13-year-old about his changing body," writes reader Janet. "He is non-verbal (autism) so it is always hard to know what he understands. A book with lots of pictures would seem to be ideal. The few I have found on Amazon don't have enough reviews to be able to tell if they are good or not. But I'm sure one of your readers will know." 

I'm in the market for this information as well. Here in the tri-state area, the New Jersey organization POAC (Parents Of Autistic Children) offers free conferences on the topic for parents and professionals. My friend Peggy went and said it was great; there's an upcoming one on January 8, Sexuality & Safety from Preschool to Puberty & Beyond

If you know of seminars, books, info or resources that can help, please share.   

Tuesday, December 15, 2015

There are no perfect kids here

"He's perfect!" people say when they see Ben, who looks all sweet and cuddly, as newborns tend to do. I feel no surge of pride when I hear that compliment. It's not because I don't appreciate that Ben is healthy and delicious (I can't stop nibbling on his cheeks) or that I know he actually isn't perfect (see: baby who doesn't nap). It's because the word "perfect" lost meaning for me a long time ago, and that's been a great thing.

In the years after Max was born, I spent a whole lot of time and energy trying to get him to keep up with society's definition of a correctly developing child. With every milestone he missed, with every thing he didn't do—not grasping a bottle or toys, not babbling, not crawling, not walking, not talking—I grew more and more despondent. It wasn't just that I wanted him to achieve those things; it was that I also delusively kept hoping he would do them right on time.

I have a perfectionist streak; I am good about dotting all the proverbial "i's" and tackling details, which is why I enjoy being an editor and why I'm the person in our marriage who handles the bulk of the forms, paperwork and plans and "Clean your room!" edicts. These days, though, with the barrage of information available about baby development, it's easy for anyone to get caught up in raising the perfect tot.

There were no apps back when Max was born, but there were plenty of websites, e-newsletters and books that let you know every single thing a child was supposed to do every single month. Oh, and I looked. I knew I shouldn't, but I did—obsessively. I'd even reread chapters in What To Expect the First Year, hoping I'd come upon one small thing I'd skipped over that Max was doing. But, no.

Finally, I give away the baby development books and unsubscribed from the newsletters. I had to; they were fueling my anxiety. It was one of my first steps toward acknowledging that I had a kid who wasn't perfect, and who likely never would be. Max would do things on his own timeline, in his own way. Or he wouldn't do them, and I had to accept that.

On Max's birthday this year, I posted a Facebook update in the evening (around the time I gave birth to him) about how I couldn't have imagined what lay ahead of us: the seizures, the stroke, the NICU stay. "I couldn't have imagined that I would become the mom of a child with special needs," I wrote. "But then: Max. He is not the boy I imagined I would have—he is the most amazing boy I never could have imagined."

Max taught me to be a mother who helps her child achieve his potential, but doesn't hold him up to anyone's standards or her own overly ambitious ones. He taught me to truly appreciate a child's abilities, perfection be damned. That's mostly stuck with me for Sabrina and hopefully, Ben, too. And if you saw the state of my home right now, it would be very clear that my perfectionism has been buried alive under piles of papers, laundry, toys and assorted stuff although I have managed to keep one counter in our kitchen free of clutter, and it is my safe place.

Monday, December 14, 2015

Profile of an anti-napping baby

Name: Ben, aka Pookie
Age: Two months old
Profession: Baby
Twitter: @notnapping
Likes: Eating, baths and not napping
Dislikes: Napping
Hobbies: Staring at faces, ceiling lights and items with contrast; figuring out he has hands; not napping
Most likely to be found... Not napping
Favorite saying: You snooze, you lose.
Favorite song: "Don't Wake Me Up Before You Go-Go 'Cause I'm Not Sleeping"
Favorite movie: Eyes Not Wide Shut
Favorite book: The Awakening, by Kate Chopin
Favorite poem: "Stopping By Woods On A Snowy Evening" by Robert Frost. (See: "Miles to go before I sleep.")
Favorite city: New York, aka the city that never sleeps
Life goals: Score Guinness World Record for Most Non-Napping Baby
Most recent accomplishments: Staying mostly awake for six hours, with just two ten-minute naps; starting a petition to ban naps
Ben says: "Cooooooo! Goo!"

Friday, December 11, 2015

The Special Needs Blogger Weekend Link-up: Stop shopping and post!

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: This is thirteen

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, December 10, 2015

This is thirteen

Thirteen is wanting to be a fireman when you grow up, just as you've been planning for the past couple of years, and still rocking that Fireman Max hat.

Thirteen is being a caring big brother. When I told you that I was bringing Ben to your bowling birthday party, you held your hands over your ears and said, "Loud!" but I reassured you we'd stay in a quiet room.

Thirteen is loving school so much that you get upset when there are days off for a teacher conference. 

Thirteen is trying to get out of doing homework by saying that you're tired.

Thirteen is being mature enough to remind your mom when she forgets to give you the ear drops that the doctor recommended. 

Thirteen is still enjoying Mickey Mouse Clubhouse. 

Thirteen is understanding that you have cerebral palsy and not caring.

Thirteen is poking fun at what you know you're supposed to be doing, like when you say "Thank you!" instead of "Excuse me!" whenever you burp, with a wise guy smile on your face.

Thirteen is being adventurous about exploring new restaurants, new places, new activities, new cities and of course, new firehouses.

Thirteen is understanding the importance of hair gel.  

Thirteen is needing to know when Daddy is coming home from work. 

Thirteen is being better at navigating your iPad speech app than your parents are. 

Thirteen is loving showering.

Thirteen is starting to understand the nuances of interacting with people, like saying "Ohhhh!" or "Wow!" or "OMG!" when told something interesting or "That's nice!" when your mom wears something new.

Thirteen is getting ticked off at your younger sister for teasing you and roaring at her.

Thirteen is appreciating it when your younger sister helps you on the computer, opens stuff for you or otherwise lends you a hand.

Thirteen is having the same sweet smile you've had since you were three months old.

Thirteen is informing your parents, whenever you want something, that it can be ordered off

Thirteen is that squeal you let out when you're excited about something. 

Thirteen is letting the occupational therapist know exactly what you'd like to do during your session: build a firehouse out of cardboard boxes. 

Thirteen is announcing that you are going to marry that girl on the school bus. And that girl at school. 

Thirteen is eating and drinking independently, no more bamboozling Marshmallow Daddy into assisting you. Well, most times.

Thirteen is getting into texting.

Thirteen is regularly telling people about your favorite things—bowling, the color red, the movie Planes Fire and Rescue, stuffed shells—and making a list of them for handy referral.

Thirteen is broaching concepts that are hard for any of us to understand. The other day, you told me you had the best daddy in the world. Then you asked me about my father and I said yes, he was a great dad. Then you asked me where he was and I said he had died. You said, "Awwwwww." You made a rocking motion with your hands and I realized you were wondering if he would come back as a baby. I said, "No, when you die you do not come back" and I saw your wheels spinning and we left it at that. 

Thirteen is encouraging your mom and dad to kiss after they've had an argument.

Thirteen is helping to take out the recycling, tossing the baby's dirty diapers and pitching in with keeping the house neat.

Thirteen is insisting on getting a haircut.

Thirteen is truly meaning it when you ask your mom "How are you?" 

Thirteen is your face lighting up when you hear the sound of a fire truck siren in the distance.

You are one unique thirteen, Fireman Max. I'm so, so, so proud of you. I hope this year brings all the good things. 



Wednesday, December 9, 2015

Family fire safety during cold weather: 25 key tips

Once it gets colder outside, your house gets warmer and you decorate for the holidays, there are some increased fire risks to keep in mind. As ambassadors for Kidde, Fireman Max and I are sharing these simple safety pointers. As much as you think you may know, I'm betting some tips will be new to you as they were to me.

Space heater, chimney and candle heads up

1. Place a sturdy screen over your fireplace to prevent sparks from zooming into the room, says the National Fire Protection Association (NFPA). Put ashes into a metal container only once they are cool, then keep the container a safe distance from your home.
2. Do not toss gift wrap paper into the fireplace—it can ignite suddenly and burn intensely, notes the U.S. Consumer Product Safety Commission.
3. If your space heater is on the old side, replace it with one that meets the latest safety standards, advises Kidde, including having an automatic cut-off device and guarding around the heating coils and burners.
4. Keep space heaters at least three feet away from bedding, drapes, furniture and other flammable materials, per the U.S. Fire Administration. Keep candles at least 12 inches away from anything that can burn, too, urges Safe Kids Worldwide (SKW), including clothing, books, paper, curtains, Christmas trees and paper decorations.
5. Turn off space heaters and blow out candles when you leave an area or before you go to sleep.
6. Don't place lit candles—or Chanukah menorahs with lit candles—in a window where blinds and curtains can close over them.
7. Extinguish taper and pillar candles when they get to within two inches of the holder or decorative material. Extinguish votives and containers before the last half-inch of wax starts to melt.

Carbon monoxide safety tips

8. Make sure your chimney is cleaned and inspected every year; you want to keep them free of leaves, residue and animal nests for proper venting, note the experts at Kidde.
9. You also want to have a licensed professional inspect your heating system and other fuel-burning appliances.
10.  To prevent a buildup of carbon monoxide—especially at night when your family is asleep—open the fireplace damper before lighting a fire, and keep it open until the ashes are cool.
11. Never use an oven or stove to heat your home.
12. Install a carbon monoxide alarm, as with smoke alarms, on every level of your home, recommends SKW.

Got a portable fireplace? Check out this video from the NFPA.

Cooking safety 

13. Whether you're cooking up a holiday feast or just mac 'n cheese, keep cooking areas free of combustible materials including potholders, paper towels and packaging, says Kidde. Avoid wearing loose clothing that can catch fire.
14. Turn pot handles inward to prevent spills.
15. Never pour water onto a cooking oil fire—it will only exacerbate it.
16. If there's an oven fire, turn off the heat and keep the door closed to contain it.
17. Keep a kitchen fire extinguisher handy, like the Kidde Kitchen Fire Extinguisher RESSP that we have—and read the instructions so you actually know how to use it.

Holiday decorating to-dos (and to-don'ts)

18. When you're buying a fresh tree, go for one with needles that are hard to pull from the branches—they shouldn't break when bent between your fingers, or fall off when the trunk of the tree is bounced on the ground, says the CPSC. The trunk butt should be sticky with resin.
19. If you get an artificial tree, make sure it's identified by the manufacturer as "fire retardant," reminds the NFPA.
20. Before you place the tree in the stand, cut one to two inches from the base of the trunk.
21. Keep the tree at least three feat away from heat sources like fireplaces, radiators, candles, heat vents and lights.
22. Add water daily to the tree stand.
23. Use lights that have been tested by an independent laboratory, per the label. Toss any string of lights with worn or broken cords or loose bulb connections. Connect no more than three strands of mini string sets per single extension cord, and a maximum of 50 bulbs for screw-in bulbs. And turn off all lights before leaving the house or going to bed.
24. Don't use lit candles on the tree.
25. If you make paper decorations, says the CPSC, look for materials labeled "non-combustible" or "flame-resistant."

Last: Enjoy!

More from the fire safety series from me and Fireman Max:

Making a family fire escape plan for kids with special needs

9 summer fire safety tips for outdoor fun

What we learned from our home fire safety inspection

Protecting your family from a home fire

For additional info, 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. 

Fireplace image: Flickr/Rickydavid

Tuesday, December 8, 2015

The next best thing to winning money is....

Max made a small fortune last night—about 70 cents. He had been enjoying some perfectly legal betting, and threw his hands up in the air in victory. I was glad he won, but I was even more glad that he wanted to win.

Come Chanukah time, Sabrina is a master of playing dreidel. The rules vary but at our house, each participant starts with the same amount of pennies and, at every turn, puts one into a central pot. Then you spin the dreidel, a four-sided top. Depending on which Hebrew letter it lands on, you either contribute a penny to the pot, take half of the pot, do nothing or take the whole pot.

Like most kids, Sabrina plays to win. Max has never shown much interest in the game, until last night. Dave helped him spin the dreidel. Max said "Awwww" when he had to give money and "YEAH!" when he snagged cash. That in itself was a major win. Max hasn't cared about playing games over the years, and not being able to have family game night—something I'd looked forward to when I had kids—was just one of those dreams I had to give up. Last night was our first one. But more key, Max had the focus and competitive spirit. 

I've seen flashes of it, like when Max decided he needed to walk in the door first when we arrived somewhere. Once, when we were at the physiatrist's office, the doctor made Max and me repeatedly race down a hallway so he could check out Max's gait and he cracked when—every single time—Max started inching ahead of me before he'd said "Go!" 

In many ways, Max's cognitive development is a mystery. Times like this are so heartening to Dave and me; wanting to win shows drive and confidence, along with the awareness that winning is awesome. 

I think this was a good reminder for Sabrina, too—Max is a force to be reckoned with! She said "Argh!" when Max won, but with a smile on her face. I think she's mature enough to realize this was a big deal for Max. 

It wasn't just a game of dreidel, it was a life score. 

Meanwhile, Max is saving up to buy a fire truck. As in, a real one. 

Monday, December 7, 2015

The best birthday party ever, once again

For weeks, Max kept telling me he was going to have "the best birthday party ever!" He's on this "best ever" kick. He tells Dave he's "the best daddy ever!" Me, I'm the best mom ever, especially when I take him out for ice-cream.

After last year's fire-truck themed birthday party (and a ride there in his favorite fire truck), I wondered if subsequent birthday parties would pale in comparison. But, no.

Max wanted to have his party at the bowling alley, as he's done several times, with pizza and red punch. And there would be a fire truck theme, once again, complete with a fire truck piñata. And as in the last few years, he'd get a photo ice-cream cake with an image of his beloved fire truck no. 31, ringed with red icing.

There were no plans for a fire truck ride. That is, until Deputy Chief Joe showed up at our house on Saturday morning. He was going to let Max ride on the truck in our town's local holiday celebration except as it turned out it was the same time as Max's party—and so, could he offer Max a ride the next day instead? Um....

And so, Max did have the best birthday party ever, once again, surrounded by family and friends from school. And he informed the bowling alley people he'd be back again next year, when he will surely have another best birthday party ever. It's the birthday party equivalent of that movie Groundhog Day.

And then Dave took him to the fire station yesterday and the two of them got a ride around town. ("It was pretty cool!" gushed Dave). Max said he had the best birthday weekend ever. And I'm betting this Thursday, his actual birthday, may just be the best birthday ever.

It's pretty awesome going through life always thinking you're having the best experience ever, again and again and again.

Friday, December 4, 2015

The Special Needs Blogger Weekend Link-up: Share a post

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: Great Toys For Kids With Special Needs: 2015 Gift Guide

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. 

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