The unexpected foods you crave during pregnancy

Turns out that potato salad was the source of the deadly botulism outbreak at that Ohio church potluck dinner (it was made with canned potatoes). I read that in the news the other day, and I felt badly for the victims. I also thought, Hmmm, I could go for some potato salad. This is because it has become my new essential food group; I pretty much want it all the time. I would it eat for breakfast. Actually, I have.

It's not just that I crave potato salad; it is the one food that quells the queasiness that occasionally strikes. When the guy behind the deli counter at the grocery near my office sees me approaching, he automatically pulls out a little container of the stuff and hands it to me. It's weird; potato salad is usually something I eat at barbecues, and certainly not in the vast quantities I've been consuming. I've never before craved potato salad during either of my other pregnancies.

Thankfully, it's not the only food I'm craving. My body is also begging for cottage cheese, sugar snap peas, orange juice, milk and half-sour pickles (which I always crave—pickles are one of my favorite foods). I don't want sweets, other than the occasional piece of chocolate; they just don't taste so good right now. When I tried to down a Samoa the other day, usually my favorite Girl Scout cookie, it wasn't as yummy as it usually is. Maybe the lack of sweet tooth is balancing out the potato salad carb overload. I hope.

So, yes, I'll have potato salad with that. And if any of you have a great recipe to share, please do! What foods did you crave during pregnancy?

Image: Flickr/Andrew.T@NN

Sibling rivalry is an awesome thing

Sabrina came home from school the other day, beaming. She'd gotten 20 out of 20 words correct on her spelling test. I sat on the couch and looked over the paper she handed me.

"Wow, that is great!" I said. "You are so good at spelling."

"Me too!" announced Max, and plopped down next to me. He stared over my shoulder at the words. He looked at me expectantly; he wanted to show me he knew them, too.

"Sabrina, do you mind if Max tries your words?" I asked, not wanting to steal her thunder. She didn't mind.

Max has gotten to be more competitive lately, and it goes beyond the thing that started last fall in which he always wanted to be first—into the car, into the restaurant, wherever. Happily, that phase didn't last. Now he is all about the win. When he and Sabrina play Wii bowling, he is determined to beat her. If they're playing t-ball in the backyard, he wants to get more hits than her. I literally had to stop the kids in their tracks the other day when Max wanted to race Sabrina down the stairs, a recipe for disaster.

Not that winning isn't a typical thing for a kid to want, but until now, this drive hasn't been part of Max's makeup. It is very cool to see him motivated like this; I think it's healthy for him and Sabrina, too. I want her to think of her brother as someone who cares about doing well, in sports and in life—and someone who can do well. I want her to see his abilities.

And so, Max and I went down the list of words, with me pointing and him speaking. At times, the hard part was knowing whether or not Max actually knew the word because his speech can be difficult to understand, but he genuinely seemed to. When he finished, he flashed me the biggest smile.

"You got 100!" I said. "Good job!"

I sat there beaming with pride for both my kids—and plotting just how I might be able to put this newfound competition to use with chores.

Protecting your family from a home fire: 9 things you probably never knew

Say you have a kid who is enthralled with firefighters, fire trucks and fire safety. And say the good people of Kidde—yes, as in the world's leading manufacturer of fire safety products—ask if you'd both like to be a Kidde ambassador. Might you be a little excited? Might your child screech in excitement? YES! Well, this is actually happening.

For the initiation, I was invited to a Safety Summit in Washington, D.C., with four other brand ambassadors. (Poor Max had school to attend). We learned a whole lot about fire safety, and even got to go door-to-door in a neighborhood with a local fire department to do a Smoke Alarm Canvas, inspecting alarms and installing free ones in homes with outdated alarms.

OK, so Max did get a wee bit perturbed when he saw pictures of me trying on firefighter gear. But he is super-excited to spread the word about fire safety in the upcoming year, as am I. These are some of the pointers I've picked up so far about key fire safety tips for your home.

1. You need a fire escape plan
Only 23 percent of people in this country have a fire escape plan, research shows. We're one of the ones who don't, and that's going to be changing soon! Ideally, you practice regularly throughout the year (both day and night), know two ways out of every room and pinpoint who will assist kids and adults with mobility issues. During the Safety Summit, we had the rare experience of taking part in a VES (Vent, Enter, Sweep) rescue training at a local abandoned mall that had been given to the local fire department to use for several months. A group of us stepped into a smoke-flooded space and carefully climbed the stairs. I could barely see a few inches in front of me.

The reality of what it's like to get caught in a fire. Firefighters use infrared cameras for visibility.

2. You have as little as two minutes to get out of the house during a fire
A Red Cross Fire Safety Poll shows Americans think they have as many as 10 minutes but the reality is, it's two minutes and can be even less time when a person with disability is involved. (Yet another reason you need that escape plan.) Sobering fact: 3200 people died in home fires in 2013, and about two-thirds of home fire deaths resulted from fires in properties without working smoke alarms. Working smoke alarms reduce the chances of dying in a fire by nearly 50 percent, reports the nonprofit Safe Kids Worldwide, a partner of Kidde.

3. Close your bedroom doors at night
This one surprised me. But everyone in the house should sleep with shut bedroom doors, the best way to contain a fire, keep it from quickly spreading throughout a home and help protect yourself should one break out.

4. You need more protection than you think 
Ideally, you want a smoke alarm installed on every level in your home, in hallways and outside sleeping areas—as well as in each bedroom.

Fireman Max, an official Kidde Kid, will soon be doing an inspection to make sure we have enough smoke alarms.

5. Smoke alarms need to be replaced every 10 years, and carbon monoxide detectors, every five to seven years
I'd always thought as long as we keep replacing the batteries in our smoke alarms we'd be good, but no; the sensors of alarms and detectors lose their efficacy as the units accumulate dust and detritus over the years. Kidde has Worry-Free sealed-in lithium battery alarms that last for 10 years (the life of the alarm), including a new battery-powered Combination Smoke and CO Alarm (with a voice alarm), so you never have to change a battery for the life of the alarm. Best gift I ever got at an event.

6. To use a fire extinguisher, remember: P.A.S.S.
Given that many of us have never had to use a fire extinguisher, it pays to get a couple of small ones and practice in an area outside where you don't care about a lot of dust. (Just note that after you practice, you can't use the extinguisher again.) Remember this acronym:
• Pull the pin on the fire extinguisher handle.
• Aim the nozzle/horn of the extinguisher a the base/bottom of the fire.
• Squeeze the fire extinguisher handles together to make the extinguisher work.
• Sweep the extinguisher nozzle/horn from side to side, as if you were using a broom.
Note, extinguishers tend to expire within 10 to 15 years but if yours doesn't have an expiration date, you want to make sure the pressure gauge is in the "green" area—check yours regularly.

7. Never throw water on a kitchen fire
There are close to 155,000 kitchen fires a year, many caused by heating fat or oil. Never, ever throw water on a kitchen fire—it won't put it out and could cause a steam burn. Try to cover the flames with a lid. Next option: Toss a damp cloth over them or, better yet, use a kitchen-designated fire extinguisher that packs special dry chemicals geared toward putting out oil fires. The Kidde Fire Extinguisher RESSP is made specifically for residential cooking equipment.

Cutting boards: check! Kidde kitchen fire extinguisher: check! A kajillion hoarded plastic bags: check!

8. That dryer lint: Clean it.

As high-efficiency and fancy as many dryers are these days, the fire service is seeing a higher reported number of fires caused by improperly maintained dryers, we learned when we visited Prince George's County Fire/EMS Department in Maryland. In other words, clean that dryer vent regularly. You can suck out even more lint with a vacuum cleaner, a weirdly satisfying activity.

9. There's a reason smoke alarms beep at 2 a.m.
When a smoke alarm's battery falls beneath a certain voltage, the alarm chirps. During the daytime, a dying battery may have enough power to keep going. But at night, when temperatures in a home drop, it slows the chemical reaction of the battery—and that annoying chirp can start, along with that familiar wife-to-husband chirp, "Please find a new battery now!"

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.

Trader Joe's is great for mac 'n cheese and therapy, too

Every once in a while, early on a Sunday morning, Max and I head over to Trader Joe's before the crowds descend. He likes to load up on their mac' n cheese. I like to load up on sugar snap peas and sneak in a little occupational and speech therapy for Max. 

First, Max grabs a cart, masterfully whizzing it around—so fast that I have to remind him to stop so we can actually shop. He's the one who loads up the cart, although he attempts to pick up everything with his right hand alone.

"Two hands, Fireman Max!" I say, repeatedly. "Two hands!" (I need an app for that). 

We read the names of products out loud. He grasps the cup at the juice sample station and drinks. He zooms the cart around some more.  

The flat boxes are the easiest for him to pick up. Dunking ten boxes of mac 'n cheese into the cart? No prob. The taller cartons—like the French onion soup in the frozen food aisle—are harder, and take him multiple tries. ("Two hands, Fireman Max!")

When Max was little, his therapists were always urging Dave and Me to basically seizing everywhere we went as a therapy opportunity. In concept, that sounded great, but given Max's aversion to venturing out to new places, this didn't work out so much in real life. Now that he's gotten adventurous, and he is extremely fond of eating, we're able to get him to use his hands, climbing and balance in all sorts of different settings. 

The checkout people at Trader Joe's are the best. Usually, we're the only ones in our line at 8:00 a.m. on Sunday morning, and so they let Max drop products onto the counter and scan them himself. Then he helps load up the bags. This weekend, I got the lovely checkout lady to also say, "Two hands, Fireman Max!!!" Then he gave her a high five and grinned big, and we zoomed out to the car. 

The Special Needs Blogger Weekend Link-up: Share, 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: How the kids have reacted to my pregnancy

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. 

How the kids have reacted to my pregnancy

The last time I was pregnant, Max was a year and a half old and while he certainly noticed my burgeoning belly, he didn't get what was going on until Sabrina came home from the hospital. So experiencing the kids' reactions has been a big part of the joy of this pregnancy so far. And, thank you for asking, I'm feeling good!

When we told them I was pregnant

"Really? There's a BABY in there?" (Sabrina)

"When can I tell my friends?" (Sabrina)

"Ig?" As in: Is it big? (Max)

Can I visit the baby in the hospital? (Max)

Can I also visit FDNY when we go to the hospital? (Max)

"Will we still take good vacations?" (Sabrina)

Can he hear my fire truck videos? (Max)

"When will the baby start liking chocolate?" (Sabrina)

The part where we asked them not to tell anyone that I was pregnant

Sabrina, every night: "Mommy! Can I tell everyone tomorrow? Please?"

Every time Sabrina had friends playing at our house: "Mommy, pleeeeeeeease, can I tell them?"

When our babysitter walked in the door the morning after we told them: Max pointed to my belly, then did this baby-rocking motion with his arms (like he did in the video). Our sitter: "Is he saying you're pregnant?!"

When we told them it was OK to tell our family, and we were at our Passover seder, and Sabrina asked: "Who's at the table who you can't see?"

When we told them it was a boy

"Waaaaaaaaaah!" (Sabrina, who had been banking on a girl)

"I'm going to be the only kid in my class with a baby brother!" (A gleeful Sabrina, five minutes later)

Can we name it Max? (Max)

Can he live in my room? (Max)

Will he get big like me? (Max)

Other stuff the kids have been doing 

Sabrina keeps texting me baby name suggestions.

Max keeps lifting my shirts up to see if my belly is getting any bigger.

Sabrina, when I eat cookies: "Should you be eating that?"

Sabrina, looking at ultrasound photos: "I think he looks like Daddy."

When I leave for work, they each kiss my belly goodbye. #melt

Our family's next big adventure

I can't begin to express how happy I am about our news. So, I let the kids do it.

Uts is one of my favorite words ever

Dave bought me a cherry and coconut scone this weekend from a local bakery, a rare treat. Max stared at it, hungrily.

"Uts?" he asked. ["Nuts?"]

"Uts" is one of my favorite words ever. Max was checking to see if he could have a bite; he knows he is allergic to nuts. This is a new thing he's been doing for the past few months with foods he doesn't recognize, and I am so grateful he's gained the understanding and cognition to look out for himself.

As Max gets older, self-advocacy is on my mind. I will never stop helping him however I can, but I also want to empower him to look out for himself. I've written before about ways to teach your kid to be his own champion, including baby steps parents of younger kids can take. But having a kid who is now aware of his nut allergy is huge. And, not for nothing, I can recall a time when Max didn't ask questions; it's great this is now part of his communication repertoire.

Max is well aware of the effect nuts can have on him. He gags and breaks out in big blotches when he's ingested something that contains nuts, and he sure isn't into Benadryl (unlike, say, blue cheese, it is definitely not an acquired taste). I'll bet Max has some memory of that time when he was three and Dave decided to let him try the vegetarian paté at Whole Foods; poor Max puked everywhere and Dave learned that free samples are not always a Good Thing.

Sabrina takes full advantage of Max's newfound nut concern. When she's eating something tasty and Max is eyeballing it, she'll say, "Max! This has nuts in it!" She'd say that if she was eating a banana. Then I'll give her the raised-eyebrows look and she'll back down and admit, "OK, Max, it doesn't have nuts but you can ONLY have a little bite."

Me, I'm somewhat more generous; I handed over most of the scone to Max. At least I'll never have to share my PB&J with him.

Image source: Flickr/Herr_Hartmann

Max doesn't want to borrow the car

Last night, Max was cruising YouTube, looking for interesting videos involving fire trucks or BMWs (his car of choice).

The question popped into my head and I blurted it out:

"Max, do you want to drive a car when you grow up?"

"No!" he said, emphatically.

He's previously informed that when he is a firefighter he plans to sit in the back of the truck and not be the driver, but this was the first I'd heard about him not wanting to drive a car. In fact, one of his favorite activities is sitting in our driveway in the driver's seat of our minivan and pretending to drive.

"Why don't you want to drive?" I asked.

"Ash!" he said, and made a motion with his hands of a crash.

Oh, my heart. He was afraid he'd cause an accident. I knew what he was thinking.

"You don't want to drive because you have cerebral palsy?" I asked.

He nodded.

"Max, people with cerebral palsy can drive!" I said. I showed him some videos on YouTube. He was particularly fascinated by a guy with cerebral palsy driving a pick-up truck and a woman with CP who gave a detailed description of her car adaptations.

"Max, you'd probably drive better than Daddy!" I said.

"WHAT?!" said Dave.

Max laughed.

Then we checked out self-driving cars. Max watched the Google version navigate itself around with awe. Audi just came out with one and we watched that video, too.

"Wow!" he said.

In the end, he said he still wasn't interested in driving and I let it go. Hey, it's not like he's going to be applying for his license tomorrow. He has plenty of time to decide. Who knows, by the time he's old enough to hit the road everyone could be using self-flying cars.

I certainly don't want to give Max false hopes about driving; I just want him to know that possibilities exist. The cerebral palsy may give him considerable challenges with fine-motor skills and coordination, but in his mind, I want him to view life as one big, open road, awaiting him.

The Special Needs Blogger Weekend Link-up: Here you go

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: 22 free things, services and grants for kids with special needs

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. 

22 free things, services and grants for kids with special needs

Enjoy! And feel free to share other great free things for kids with special needs in the comments.

Free lifetime pass to national parks, wildlife refuges and national forests

This is a free pass to more than 2000 recreation sites for U.S. citizens or permanent residents of any age who have a permanent disability; they can be accompanied by three fellow passengers in the car. Admission isn't always free—it may just be discounted—so check the site you're planning to visit. The application is here; there's a $10 processing fee plus documentation is required.

Free iPads, apps and speech therapy

Small Steps in Speech funds supplemental treatments and therapies not covered by insurance for children with language and speech disorder, along with grants to purchase communication devices.

Danny's Wish provides iPads to kids with autism.

The itaalk Autism Foundation has an App Facilitator Program that provides kids with disabilities of all kinds with up to $250 in free apps per calendar year.

Free wheelchairs and bikes

Wheelchairs 4 Kids provides wheelchairs to children, and can also assist with ramps, wheelchair lifts and home modifications.

Variety-The Children's Charity gifts manual and powered wheelchairs to children along with adaptive bikes, along with walkers and other gait assistance gear, through local chapters—find yours here.

Free customized songs

The non-profit Songs of Love Foundation creates custom songs for kids and teens facing medical, physical and emotional challenges. They'll create professionally-produced lyrics featuring the child's name and references his or her favorite stuff, with a performer singing it.

Free photo shoot

Families of kids with special needs who are stretched thin with medical or therapy bills may apply for a Smiles for Katie Family Photo Grant, through Special Kids Photography of America (SKPA) to receive a free photo shoot and 8 x 10 photo. The grant is named after a four-year-old with Down syndrome, Katie, who passed away while on vacation with her family. You can apply for the grant only if work with an SKPA photographer. Details and the application are here.

Free books

The National Library Service for the Blind & Physically Handicapped offers free braille and audio materials—via postage-free mail—to people who have visual or physical impairments that prevent them from reading or using standard print materials. They also have musical scores in braille and large print.

Free plane trip rehearsals

The Arc's Wings for Autism—a national program—allows individuals with autism (along with their families) to "rehearse" a plane flight, complete with obtaining boarding passes, going through security and boarding a plane. Find upcoming program locations here.

GRANTS AND FUNDING PROGRAMS FOR KIDS WITH SPECIAL NEEDS

Building Blocks for Kids: This nonprofit bridges the funding gap for products and services for children with physical, emotional and developmental challenges and helps pay for therapies, home modifications, hearing aids and wheelchairs.

Different Needz Foundation: Awards annual grants to individuals with developmental disabilities.

First Hand Foundation: Provides grants that cover assistive technology and other equipment, treatment, vehicle modifications and displacement expenses for families of kids who have to travel during treatment.

Hannah's Helping Hands: Offers quality of life and summer camp grants for families that care for children and adults with special needs in Florida, Indiana, Rhode Island, New Jersey and New York.

UnitedHealthcare Children's Foundation: Offers grants for kids 16 years old or younger who are already covered by a commercial health plan and require medical services/items that go above and beyond the coverage offered.

GRANT PROGRAMS FOR KIDS WITH AUTISM

ACT Today! Has a grant program for assessments, treatments and life support for children with autism, plus an Act Today! SOS grant for immediate and imperative needs.

DREAM FULFILLMENT PROGRAMS FOR KIDS WITH SPECIAL NEEDS

While amazing organizations like Make-A-Wish America, Kids Wish Network and Children's Wish Foundation International exist to fulfill dreams of children with terminal and life-threatening illness, there are nonprofits that also grant wishes for children with disabilities, chronic illness or physical challenges including Dream Factory and Sunshine Foundation

There's also Give Kids The World, an 84-acre park in Central Florida that provides free week-long vacation to kids with critical illnesses and their families. Applications are only accepted through wish-granting foundations, and the site offers a comprehensive list here.

This list is updated frequently. If any links no longer work, please email lovethatmax@gmail.com

The very real monster in the dark

KNOCK KNOCK KNOCK KNOCK. The noise jolts me awake at 3:40 a.m. Instantly, I know what it is. Our babysitter tucked Max in last night because I got home late, and she closed his bedroom door instead of leaving it ajar like Dave and I know to. Now Max can't get out, so he's banging on his door. The cerebral palsy makes his fingers stiff and he can't twist the door knob.

KNOCK KNOCK KNOCK KNOCK KNOCK KNOCK KNOCK.

I jump out of bed, open Max's door and help him in the bathroom. Then I tuck him in, kiss his forehead and return to bed. Only I can't sleep with all the thoughts rushing through my head. 

I think about how I've been lax in getting an adaptive handle for Max's door; I've seen them sold at sites for people with arthritis and the elderly. He's getting older, and probably would like to fully close his door sometimes and be able to open it independently. Come to think of it, we could also use one for the basement door, not that I want him going down those steep stairs without one of us around.

I think about what would happen if I didn't hear Max knocking. He'd eventually give up, go back to bed and have an accident. It would be upsetting to him. It wouldn't be fair.

I think about the issues Max has with manipulating door knobs. Will that change over the years? In the scheme of life skills, it is not one we have ever brought up with the occupational therapists, given that we're still working on biggies like pulling pants up and down, taking a jacket on and off and brushing teeth.

And then, my mind goes to that scary place, the one I try to avoid. I wonder about a time when I will no longer be around to turn the door knob for Max. Who will hear him knocking in the night? Who will take care of him like I do? How will he someday get by in this world without me and Dave? How will he even comprehend that we are gone? Who will be there for him? 

This is the amorphous monster of my nightmares.

Suddenly, I just can't lie there anymore. I get out of bed, creep into Max's room and sit on the edge of his bed. I listen to his even breaths, and focus on those. It's calming. My mind can't wander as I hear him sleep so peacefully and peer into his sweet face in the light of the moonlight.

I leave his door open. I return to bed. Slowly, I nod off. I'll wake up to taking life one more day, one more night, at a time.

The older you get, the less you care

Yesterday morning, I put on a clay facial mask then wiped it off during my shower. Afterward, I rushed out to take a three-hour CPR training course for a Girl Scout troop I run. Next, I stopped by an appliance store because we're in the market for some new kitchen stuff, had lunch at a deli, took Sabrina to lacrosse practice and then drove her to gymnastics. Cut to bedtime, as I'm washing my face.

There, on the tip of my nose, lay a blob of gray clay. The kind of dot you might put on the end your nose if it were, say, Halloween and you were dressing up as a mouse. Only no, I was just going through my day, masquerading once again as an adult. Perhaps people thought I was modeling some makeup trend, like smoldering colored cat eyes (an actual spring 2015 look), although that's unlikely.

Oh, well, I thought, and washed my face without a single twinge of mortification.

One gift of getting older is that you care less and less of what people think of you. This has come in handy with everything from getting undressed at the gym to feeling confident in comfort shoes of dubious style. This is not to be confused with wanting to make a good impression—of course I still care about that. But I have no concerns about looking imperfect, behaving atypically and not being the good girl (or, evidently, of literally getting caught with mud on my face).

This indifference has been vital for advocating for Max's needs; I'm not concerned about whether anyone thinks I am being "pushy" or worse. Actually, raising Max has definitely contributed to this marching to the beat of my own drum thing. As the parent of a kid with special needs, you learn to look for unexpected solutions, because you often need to get around the system and because you will do anything possible to help your kid. There is no normal to follow and you quit caring about it; there is only the normal of the child in front of your eyes and the kind your family creates around him.

So thank you, Max, and thank you, age, for this gift. If anyone would like to fill me in on the other benefits that age brings, please do as I'm still waiting to find out.

Welcome to my complain-a-thon—join in!

My boss, who reads this blog, stopped by my office the other day. "You never complain!" she marveled. I objected—I do complain. For a second there, I was tempted to have my husband call her as proof (he is the main recipient of my gripes), but then I didn't think that would do anything to further my career.

I've often said that if I would have started Love That Max when Max was a baby, this would have been a pretty bleak blog, but he's in a good place now and so am I. Upon further consideration, though, I think it would be quite cathartic to air a list of prime grievances and Monday morning seems like a fine time to do this. So, here goes:

Husband: After all these years, I still do not understand why if I ask you to do something or buy something, I get an email from you shortly thereafter asking you to remind me what I said. Also: Why is it you never notice that the kitchen garbage is overflowing? How come you put milk cartons in the fridge with approximately 1/16th of an inch of milk left in them? Also: There is no clothing fairy in our house who picks up the stuff you leave lying on the floor. It's me.

Children: Would it be so hard to let us sleep past 6:30 a.m. and entertain yourselves? We are really not fun at 6:30 a.m. And would it be so hard to put dirty stuff in the dishwasher? Also: See "clothing fairy" above and the hampers in your rooms. Also: How is it possible that you not learned by now that whining gets you nowhere? Word.

Family: Why does getting out of the house on weekday mornings bring new chaos every single time, like we have never done this before? 

Cerebral palsy: You sure haven't gotten the best of Max but I can't stand it when you make his left foot turn in and it causes him to stumble. The walking is hard won. Do not mess him up.

Insurance company: Given that it is your job to process claims, how do you regularly lose the ones I submit for Max's therapies? Where do they go? 

Max's bus driver: It does not bode well for your common sense that you drove his bus into a big rock at the end of our block, despite being told not to U-turn there because—wait for it—there is a big rock there. Max's bus company: Being told the bus driver "means well" is not very reassuring.

House: Why must everything that needs fixing cost a minimum of $1000? 

Schools: Could you not schedule big-deal student events during the workday? Some parents have jobs.

Paperwork: Just, endless. Why can't schools and camps digitize at least some information so that parents are not filling out the same forms every single year? 

Metabolism: There is a special place in hell for metabolisms like you.

Doctors' offices: It is awful to make parents and kids wait more than a half hour. Also: You need to replace the prehistoric waiting rooms toys. Some news station would have a gleeful time doing germ testing on them.

Max's therapists: No complaints here, only gratitude...well, other than this occurrence at the IEP, but she seems to be coming around.

Work: Er, see "My boss reads this blog."

Special needs equipment suppliers: True story! I used to get Max a hand splint from the Benik company to help keep his left hand more open, since he tends to want to tighten it up. This year, we had a school therapist measure his left hand, and then she had an orthotics company order them from Benik. Cost I've paid for one splint: about $50. Cost orthotics company charged for one splint: $300. Also see: adaptive feeding spoons that run $30 and adaptive toys for $399. 

Solicitors who call our home despite the fact that we are on the Do Not Call registry: This is annoying and illegal. I hope you enjoy your conversation with Max.

Chin: Would you kindly stop sprouting random hairs?

Mommy: You are elderly and dealing with a lot. How is it you do not complain? I guess I inherited my stoicism from you. I wish you would complain just a little bit. You deserve to. Hmm, I guess I do too. I could get used to this!

Boss lady: I hope this is sufficient proof of my non-sainthood.

Everyone: What complaints do you have today?

Image source: Flicker/_6ft5

The Special Needs Blogger Weekend Link-up: Your spring break!

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: My trip to Chicago: a post by 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. 

Fireman Max bar mitzvah crowdsourcing! Wanted: good deed ideas

The one thing I know so far about Max's bar mitzvah, besides the temple we're having it in and that it will be in April 2016, is that it'll have a fire truck theme. So, wheeee! That'll be fun to do.

For the uninitiated, at age 13 a Jewish boy becomes obligated to observe the commandments; a bar mitzvah is the coming-of-age ceremony that marks the occasion. They often include a religious service, followed by a party. I'll be putting together a ceremony, with Max's input, so that it will be meaningful to him. We'll use his iPad. There will blessings ready by family and friends. And songs. And maybe a fireman jumping out of a cake! OK, not that.

One modern-day tradition is having a bar mitzvah boy (or bat mitzvah girl) complete a "mitzvah project" during the year. In common usage, the word means a good deed and typically kids commit to some sort of social action project. Teens I know have done things like regularly visiting a senior center, collecting clothing for orphanages in other countries and sponsoring food drives. Oftentimes, kids with special needs are on the receiving end of these projects.

My friend Marjorie Ingall wrote a great article for Tablet that noted it's key for mitzvah projects to have real meaning; asking for donations just doesn't cut it. I couldn't agree more, and I really want to help Max come up with something that speaks to him. But first, I need some starter ideas to offer up.

Our local fire station collects can; the money they get from selling them benefits burn victims. Max could join in on that, but I'm also thinking it would be cool for him to come up with something that he could own.

So…thoughts? All ideas will be vetted by Fireman Max!

Yep, he's happy, and it's got nothing to do with the special needs

Years ago, someone I loved dearly noted that Max was a smiley baby because he was "simple-minded." This person, who was elderly, did not mean to be awful; the observation was based on the old-fashioned misconception that people with intellectual disability were by nature happy because they lacked the cognition to be otherwise. It's something I think a lot of people still believe.

Max was, indeed, a joyous baby. Today he is a bliss-filled kid, the kind to squeal when he visits his friends at the fire station or when served his favorite dish, mac 'n cheese pie. But he is cheerful by nature. Dave and I are both pretty upbeat people (well, after I've had my coffee), and Max likely got some of that from us. I'm betting he would have been a happy camper whether or not he'd had a stroke at birth. Also: This boy is not ebullient 24/7, as you'd see if you were at our house whenever I ask him to quit watching fire truck videos on YouTube and and he has a hissy fit. Or as is quite obvious when he and Sabrina fight. Or when he doesn't want to do his homework. Or when he's tired. Or, well, you get it.

Perhaps people buy into the special needs happy myth out of pity; they assume that adults and kids like Max have less rich and satisfying lives because of their disabilities, so it's consoling to think that they are jovial. Over the years, I've had total strangers say to me, in a reassuring voice, "At least he's happy!" Yeah, seriously.

It's demeaning to our children to assume that they operate on just one speed, happy. Like any kid, with or without disabilities, Max has a range of moods—and a multidimensional personality. He's considerate, loving, strong-willed, charming, playful, funny, cautious, observant, perceptive, good-natured and friendly...for starters. Most any mom of a kid with special needs could reel off her own string of adjectives. Our kids are so much more than happy.

Maybe I'm guilty of mostly sharing photos of Max smiling. I mean, the kid has a great smile. But happy all the time? Oh, no. And that's a good thing. Because otherwise, he'd be a Disney character, not a real live human kid.

My trip to Chicago: a post by Fireman Max

This post is by Fireman Max, who had the time of his life in Chicago. And, yes, I called ahead to several places!

My big hotel.

My big room.

My big choclete chip cookie.

Chicago.

My big Firehouse Resturant.

They made me a sign.

I had mac & cheese.

I  went on fire truck.

George was nice. He was a fireman.

I went to a big firehouse.

Funny

Engine 42

 

At the musum.

I am happy.


Previous posts by Fireman Max: 

Best guest post ever: It's from Fireman Max

What I will eat in Chicago, by Fireman Max

Why I placed my disabled child in a group home

This guest post is written by a mom, Dana Linett-Silber, I met soon after we found out that Max had a stroke. A mutual friend connected us; Dana's son, Jack, also had a stroke at birth. He was five years older than Max. Dana was a big source of comfort to me back then. Over the years, we've stayed in touch. And then, I found out she'd made a tremendous decision. This is her story.

There’s a neighbor in our building who will no longer acknowledge us. She used to be friendly, but now she won’t say hello or even make eye contact. Once she let the elevator door close in my face after I asked her nicely to hold it. Her hostility started in the summer of 2008, right around the time we sent our then 10-year-old son, Jack, to a group home.



I’m sure she’s not the only one who’s outraged that we “put him away.” But I don’t care — he’ll be 16-years-old soon and I have no regrets. In fact, there are not many things I’m certain of, but one thing I know for sure is that we did what was best for all of us, and that includes Jack.



Because he can’t talk or feed himself and is physically challenged, Jack needs assistance with every aspect of daily living. He is also unable or unwilling to drink, so he gets all his liquids through a feeding tube (figuring out the reason why, after the umpteenth ICU hospitalization for dehydration, stopped mattering).



When Jack lived at home, we depended on aides seven days a week and sometimes for overnight shifts. Some of the aides were nice to him, but not to me. Some were nice to me, but not so great with him. I was friendly with a few, others gave me the creeps. Dealing with them was difficult in all the ways that managing employees can be and more, but I was desperate to keep the rotation going. With two other kids and a job, I lived in fear that one day someone wouldn’t show up.



Sometimes there were fights between the aides and me over scheduling. One weekend, I suspected that two day aides were trying to sabotage the night aide by leaving their shifts without having properly cared for Jack, in hopes that the night aide would be overwhelmed and quit over his agitated, deficient state. Our home had become a dysfunctional workplace, with all the ugly cutthroat competitiveness and politics that go along with it.



I once received an anonymous multi-page letter in the mail from a neighborhood parent who had observed my son with his aide in the park and felt his care was “not as good as it could be.” Yet this particular aide was extremely punctual and reliable, and it seemed too risky to give that up. In fact, the thought of trying to get through even one day without help scared the hell out of me.



Sometimes I would feel bad that Jack was in his pajamas in bed at 6 o’clock when other boys his age were still active. But the aide had spent hours feeding and bathing him and was exhausted and ready to go home. And I was tired, too.



I know of a family who can’t bring themselves to place their autistic 22-year-old son in a group home. He lives in a big house with his parents, attending a day program and languishing alone in the backyard, swinging on a swing or ripping up leaves. I heard his mother adds vodka to her morning orange juice and doesn’t stop drinking till bedtime.



Now Jack lives in a brownstone on a quiet block with a group of other boys his age. There are several counselors there who work as a team to provide for his basic needs. They’re young and strong and never seem tired. When Jack lived with us, his aides used to wheel him around in a big stroller. Now, his counselors prefer to hold his hand and walk with him everywhere, improving his strength and balance every day.



His home also has a nurse, social worker, den mother and manager. He is never alone, and neither are his caretakers. I never worry that his needs aren’t being met. In fact, I know his needs are being exceeded in ways they never could be when he lived with us. Whenever Jack is off from school, the team takes him and the other boys on a trip to an amusement park, concert or movie. Although we try to visit him every week, sometimes his schedule is too jam-packed to squeeze us in.



Twice a year we hire an aide and take him on a special family vacation so we can all be together and his brother and sister can bond with him. They were young when he lived at home and probably don’t remember much, but I know they’ll remember the good times we have with him now.



Granted, not all group homes may be as great as the one we found. But because Jack will never be able to live alone or care for himself, and we know that one day my husband and I will be old—and, eventually, dead—putting him in one was simply inevitable.



It’s pretty much impossible to have complete peace of mind about your children’s futures but ironically I do have it with him. I’m so grateful he’ll be able to live where he is with his housemates for the rest of his life. And because we had this opportunity and made the decision early on, we all gained so much--Jack included.

Republished with permission from Elizabeth Street

The Special Needs Blogger Weekend Link-up: One-stop holiday weekend reading!

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This girl's small act of kindness toward my son was actually gigantic

In the last couple of weeks, I haven't stopped thinking about this one thing a friend's kid did for Max. Maybe it won't seem like a big deal to some. But if you have a kid with special needs, you'll know how major it is.

Our family was at the bat mitzvah party of the daughter of one of my best friends. She has three girls, all of them awesome. There was a whole lot of dancing going on as a DJ spun tunes. Max wore his headphones (loud sounds unnerve him), and for a while he wandered around the dance floor, taking everything in and charming the photographer. A couple of times, Sadie—the middle child—came over and started dancing with Max, waving her arms and grinning. He just stood there, amused (I think he could really get used to having girls dance around him).

Other kids treated Max with the usual mix of reactions. A couple of boys his age standing nearby stared at him until I said, "Hello, this is Max," upon which they waved then walked away. Some girls his age smiled at him. Little kids gave him curious looks.

And then, a bunch of kids jumped onstage, mostly girls. Max asked me to help him up there. He stood smack in the middle of the stage, looking around. He wasn't really dancing, though I knew he was grooving in his heart.

Happily, I watched him enjoy himself. And then, this: As Sadie danced she leaned over, picked up Max's bib and dabbed at his mouth like it was the most natural thing in the world. It happened in three seconds, Max didn't even notice and they all kept doing their thing. I felt even happier.

Max drools because of the cerebral palsy, which causes oral-motor control issues. He isn't aware of the sensation, so he often neglects to dab himself with one of the cotton bandanas he wears unless one of us reminds him, "Max, wipe your mouth!" I haven't yet regularly used the Rx skin patch, scopolamine, that could help because Max doesn't care about the drool and I don't want to put him on more meds. But he's getting older and it's getting to a point where it's setting him apart from his peers and so soon I may go for it, with his permission.

Kids tend to gape at the drool. Some seem grossed out by it. But Sadie, she just matter-of-factly leaned over and dabbed. The sort of thing you'd do for a younger child who had something on his face, only she didn't hesitate to do it for an older kid. 

"Girl dabs boy's drool" isn't one of those occurrences that would make Internet headlines, unlike the stories of, say, teams letting kids with disabilities make touchdowns at football games. Grand gestures are rare, though, and just that: gestures. Small, everyday, no-biggie acts of consideration are exactly what kids with disabilities need, coming from peers who don't think twice about it.

As social and personable as Max is, he doesn't easily fit in with other kids. I always hope that there will be at least one child who makes an effort to talk with him, to draw him in, to include him. I certainly don't expect personal care, exactly why I was so pleasantly surprised to see Sadie lending Max a helping hand.

It was a small act of kindness. But it felt gigantic, to me.

Best cookie ever. Don't read this if you love cookies. You've been warned.

Last weekend, a carb miracle occurred: I discovered my favorite cookies of all time, Pan di Stelle, at a local Italian grocery. They make me very happy, and that's partly due to the fact that I first tried them when I studied in Florence, Italy as a junior in college. The memories I associate with their taste are inextricably tied to that wondrous time in my life, although these cookies are absolutely delicious, period.

Created by Mulino Bianco (basically, the Italian version of Pepperidge Farm), their name translates to "bread of the stars" and that's not over-promising. They're made with cocoa and hazelnuts, with 11 tiny white iced stars on every cookie. They are simple, not too sweet and oh-so-chocolatey satisfying. Often, when I got home from school in the villa at Piazza Savonarola, my roommate and I would veg out in front of Italian game shows, do homework and down the cookies. The psychologist who we roomed with, Gioia, would make us a delicious pasta dinner and then Marianne and I headed out for the evening's adventure—a bar, a club, a coffee house.

In my twenties, my friend Betsy was my supplier; she'd bring back bags for me when she went to visit her boyfriend in Florence. After they broke up, I persuaded an Italian deli in Hoboken, NJ, to order them for me. Then we moved to the 'burbs, I had kids and I never bothered finding them again because there are approximately eleventy billion other things I have to do besides tracking down cookies I love.

It's funny, I never had the desire to order them online, which of course you can given that you can purchase everything on the Internet except new relatives. They were a treat I only bought at a store, sticking with the tradition of my Florentine days. Then I visited a grocer in our area for the first time. I'd heard they make good sandwiches, and I was craving a turkey sub. As I wandered through the store, I spotted the cookies and I'm pretty sure I let out an actual gasp. Pan di Stelle! Here!

There were three bags of them on the shelf. Exhibiting extraordinary self control, I only bought one. Exhibiting a complete lack of self control, I ate about half the bag when I got home. I sat at the kitchen table, reminiscing about my five months in Florence. Everything about Italy is incredible—the food, the art, the architecture, the clothes, the general sentiment that life is meant to be celebrated. Most stores still closed in the afternoon when I was there, so people could enjoy time with their families.

I had no accompanying sweet tooth guilt. Each cookie has 38 calories—not too bad. In fact, accounting for the fact that I haven't eaten these cookies for 12 years, and there are 20 cookies per bag, that's an average of .6 cookies per year I'd missed out on. So really, I wasn't gorging, just making up for lost carbs.

The packaging has a photo of a Pan di Stelle Mooncake. My hunch is I'd have to travel to Italy to find them. It seems like it could be worth it, although it might be a little tricky justifying that trip to Dave.

Max is allergic to nuts. Sabrina really liked the Stelle, so I did the mature thing: I hid them in the back of a kitchen cupboard. I'm slowly nibbling my way through the bag.

In the interest of full cookie disclosure, it should also be noted that I currently have dozens of boxes of Girl Scout cookies sitting on my dining room table, which is what happens when you run a G.S. troop. Samoas are my second favorite cookie in the whole wide world. Gulp.

So, what's your favorite cookie?