Monday, June 30, 2014

Quiz: Which of these didn't happen on our vacation?

Which of the following didn't happen on our vacation last week? Here's a little pop quiz; the winner gets my kids for the whole summer. Wheeee!

• We visited four different fire houses.

• These words were uttered: "Max! Daddy is eating a crab and it's DEAD!"

• Max wore his Fireman Max hat everywhere except to bed, and introduced himself to everyone as "Fireman Max." If anyone just called him "Max" (including Dave, me or Sabrina), he corrected them.

• These words were also uttered: "Eeee a oooh-ie NOW" ["I need a smoothie NOW!"]

• We went to a Converse outlet and Max kept bringing over shoes to Sabrina to see if she liked them or not. Then he offered to buy her a pair, but we pointed out that he does not own a credit card.

• Max started peeing standing up and stayed dry overnight twice in a row. Then when we got home, he asked if he could pee on the front lawn.  

• Fireman Max suckered Daddy into taking him out to breakfast practically every single morning. Hint:

• We lost both keys to our hotel room.

• Max got rejected from a kids program for having special needs. (Hint.)

• We saw dolphins frolicking on the shoreline.

• Max went cruising on a race track and declared himself the winner. Hint:

• Dave decided it was fun to dress Max in mismatched outfits like striped shirts and camo shorts. Or, actually, he didn't consciously make that decision, it just happened, but it was cool that he dressed him.

• We had to make an emergency run to Office Depot one morning after the Fireman Max label on Fireman Max's hat got wet. Hint:

• One day, the kids had ice-cream for every single meal.

• A policeman offered Max an official policeman cap and Max informed him that actually, he was going to be a firefighter, so no thanks.

Answer: We didn't lose both keys we were given to a hotel room, we only lost one.

OK, who gets my kids for the summer?

Friday, June 27, 2014

Special Needs Blogger Weekend Link-up: Yeah, summer!

It's the Special Needs Blogger Weekend Link-up! Glad you're here to share posts and/or read others; I know you could be lounging on your deck, sipping a mojito and just dreamily gazing off into space, because I know how often that happens

What to do

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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I'm Starting A Campaign: Ice-Cream For Breakfast! Who's In?

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

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

Happy linking!

Thursday, June 26, 2014

You want another baby, your husband doesn't: Group therapy

An online friend of mine asked me to throw this out here. She writes:

"I desperately want another baby. Yes, that would make five for us. All but one of the kids would love to have a new baby, and I know my husband would come around. But he really, really does not want a baby. I don't know what to do. I feel desperate. He loves having babies. He just feels four is enough for us. I feel like I missed out on the sweet baby-ness of our youngest, because one of our other children was critically ill. Everything from that time is a blur.... Some might say four is plenty, but I just really want one more."

I can't speak from experience. Dave and I are on the same page, in concept, about wanting another baby; we just can't commit. But that's another story. Me, I'm also a big-time lover of babies, and I've had to confront myself on whether I wanted another baby...or another child. 

Do you have insights to share with this mom?  

Wednesday, June 25, 2014

When programs won't accommodate kids with special needs

The door to the room didn't have a sign saying "No kids with special needs allowed" but it might as well have.

We're at the Jersey shore on vacation this week, and I'd signed the kids up for an evening program at a hotel we like. The staffing is handled by a caregiving service, one we'd personally used over the years on vacation. The woman who owns the service knows Max, and once babysat for him and Sabrina.

I parked the car while Dave took the kids inside. It was our first evening of vacation, and we had plans to celebrate with dinner for two; Dave made reservations at a restaurant we'd been wanting to try. As I headed down the hallway, I saw Dave and the kids leave the room where the program was and head around the corner. I thought that was odd. When I found them, I saw Dave talking with the concierge. 

I'd booked the reservation days ahead of time. I'd told the staffer that Max had special needs, and that  he'd been to the program before. The concierge said she'd been trying to reach me (unfortunately, they'd gotten my phone number wrong). The owner of the caregiving service had informed the hotel that the program could not accommodate Max, she told me.  

I was furious. And bummed for the kids, who'd been looking forward to going. And bummed for me and Dave, too. I asked to speak with a manager as Dave and the kids walked away. I told him how wrong it was not to include kids with special needs. He apologized profusely, but there was nothing he could do, he said, because the program was "outsourced" to the sitting service (which he noted again when I called him). I walked off to grab Dave and the kids and leave. The manager followed and offered to host us for dinner at the hotel's restaurant. Given that our plans had been ruined, we thought it was fair to accept.

After we sat down at the table, Max cried. "Am!" he said. "Am!" ["Camp!'] It literally made my heart hurt. I reassured him that we'd do something else that was fun and that we'd have an ice-cream party at home. Sabrina was disappointed, too. We talked about what it means for places to include kids with all kinds of abilities, and how wrong it was not to let Max come to the camp.

A program refusing to accommodate a child with special needs isn't uncommon; it's happened to us before, as well as to other families I know. And it wasn't the caregiving company owner's fault that Max showed up when he wasn't wanted...but it was seemingly because of her that Max was unwanted. I called her; I left a message saying I considered it "unfortunate" when places didn't accommodate Max, said I'd be writing something on my blog, left my number and asked her to call back. Instead, she sent several long texts.

I'm sharing bits below. I'm hoping that people running kid activities, classes or programs who aren't amenable to letting kids with disabilities join in will read this and see just how exclusionary it is...and why their perceptions may be wrong.

"Max cannot feed himself in [on] his own, our staff needs to serve all campers. Max needs one on one assistance which we can not provide."
Actually, Max is now feeding himself on his own and has been for some time. Like any children, those with special needs can progress; they do it on their own timeline. Just because a child with special needs is unable to do something one year, it's wrong to assume he will never be able to do it. Our children may be delayed, but they have the potential to develop.

"We are not accommodate special needs children there it is not a school, it is a csmp [camp]" And then, in another text, "As much ad [as] we sympathize of [with] you you must consider out [our] staffs lack of knowledge and ability yo [to] cope as well."
What she seems to have been saying is, only people who are certified in special ed can help children with special needs in in a camp-like setting. I obviously can't speak for all kids with disabilities, but I can say that the care that my son currently requires in such a setting is this: Help picking up a cup to drink, help pulling his pants up and down during toileting, help with craft projects. It's similar to the care a young child might require. Also, you need to have patience with communicating with him. For these kinds of things, I am 99.9 percent sure, you do not need a special ed degree. Dave and I had always felt comfortable leaving Max in the care of experienced sitters who'd been background checked, as this company's sitters are.

"We can not accept children who have difficulty communicating to staff...." And from another text, "If a child can't express their desires, wants or needs then obviously this makes it difficult for a staff member to assist. This is not beneficial to the child and it can cause frustration to both parties. We obviously know we can contact parents but like last year phone calls are not heard as most parents are preoccupied."
She was referencing last summer, when Max wet himself and the program staffers tried to contact us only we didn't have cell phone reception in the restaurant, we eventually realized. Now, in terms of not accepting children who have difficulty communicating to staff: The program at the hotel accepts children ages 3 to 12. It is hard to imagine that every single 3-year-old (or 4-year-old or 5-year-old) is able to clearly communicate his "desires, wants and needs." Worse is the assumption that Max cannot do so. Max communicates in his own way—nodding, saying "yes" or "no," gesturing, speaking some words and using a speech app. I am not saying he communicates like another 11-year-old can; he does not. But he is capable of expressing himself. There is just one communication issue, as I see it: People who refuse to engage. 

"One aide for Max last year told me she spoke with your husband when Max was picked up. I was there too and said we had difficulty and that children must be independent. I am sorry you don't remember this." And then in another text, "These verbal messages were relayed in a kind manner so that you understood this camp wasn't right for Max. This message as clearly stated by both...and myself and as kind as tactful as possible stated -------- Apparently and obviously wasn't understood or accepted!...." 
Neither Dave nor I recall what was said a year ago, but it was evidently so "tactful" that we didn't get the memo that Max was no longer welcome in the program. Why would we have returned otherwise? This summer, we assumed the arrangement would be the same as the one we'd gladly and gratefully worked out in years past: that one of us would come back should Max need toileting help. This is something we've done with hotel programs when we travel. As for being "kind" to us in relaying that a program isn't "right" for Max, we don't need kindness because including a child with disabilities in a program, event or activity is not an act of kindness. It is fair. And in a place of public accommodation, it's the law.

"I will keep your voicemail as a threat to us and [the hotel] and submit it to their attorneys for proof ad [and] evidence in a court of law if our companies are negatively or discrinatorily [discriminatorily] mentioned on line."
Yah, discrimination: Let's talk about discrimination and the Americans with Disabilities Act (ADA). Title III specifically states that individuals with disabilities cannot be excluded from "public accommodations" because of a disability. "Public accommodations" applies to any private place of business or nonprofit group that's open to the public for sale or lease of goods and services, regardless of size—which includes restaurants, movies, hotels, places of recreation, day care centers, camps and more. (Private clubs and religious organizations are the only private entities explicitly exempt from Title III requirements.) There is also discrimination that plays out in the code of good old morals and ethics. Parents of kids with special needs have every right to speak up when they face what they believe to be discrimination of any kind.

"I don't appreciate words put in my mouth nor look like the bad guy here against a precious child to who we bent over backwards to accept, assist with love and care, so you could enjoy a quiet dinner."
Again: Kids with special needs are not charity cases that childcare providers need to "accept" or "assist with love and care" any more than any other child they take care of. Don't all children deserve this? I wondered if this all boiled down to financial concerns. The owner had a third sitter on hand last year (a nurse) and, as she informed, me, "the hotel only pays for two staff members." I understand that small businesses may not be equipped to handle extra costs like this. If we had known that this was an issue, we might have appealed to the hotel. But we were never given that chance.

"Unfortunately, not everyone agrees with you and your husband on how easy it is to care for a special needs child especially when we don't have the experience."
Well, whoa. I definitely don't think childcare is easy (and I don't appreciate words put in my mouth). And yes, Max requires more attention than a typical kid his age, but he shouldn't be excluded from programs or activities because of that. Caring for him means extra assistance at times, but it also means connecting with parents about what will make things work for everyone involved when concerns arise. Caring for him means believing that children with special needs deserve to enjoy the same pleasures that other children enjoy. Caring for him means not assuming that parents think it's "easy" but that they assume it's OK to leave their child in a well-run program they pay for, as parents do.

There is a half-day children's program our kids used to do at a resort we're at each summer (they've aged out of it). The woman who ran it for years, a teacher, was genuinely happy to have Max there and had no issues changing him when he wasn't yet potty trained or helping him in the pool or otherwise. She never said one word about helping him, other than to ask what she needed to know.

There is a gym that Sabrina goes to near our home. On occasion, they have Parents' Night Out. Siblings are welcome and when I have called to let them know Max would like to attend, they've tried to find an additional staffer for the evening because it's a physical event and Max needs a hand. Usually, it's a gym teacher in her late teens who has no experience caring for kids with special needs. Sometimes they've been able to get someone, sometimes they haven't. But they try.

Obviously, laws were instituted because of the considerable uphill battles people with disability face in terms of accommodations. But there are continued issues with a lack of awareness and enforcement, and for parents and others, the challenge of not having the time or resources to push (and push some more) or take action when we're raising kids who already require extra time and resources. I've often found it's easier to walk away and, when possible, find something else led by someone who gets it. My son's biggest disability isn't his cerebral palsy—it's people's closed mindsets.

People should want to include kids of all abilities in activities not because they have to, or out of kindness, but because it's the right thing to do. Yes, it takes some effort. But as Max shows me every day, where there's a will, there's a way.

Image: Flickr/Celine Nadeau

Tuesday, June 24, 2014

Vanity, thy name is Max

Max has picked up an interesting habit, and it is called peering at himself in every reflective surface around.

This mostly has to do with his fondness for his new firefighter hat, which Dave handily labeled Fireman Max. But he also wants to make sure his hair is tucked out of the way, which is the way he likes it. The other morning, he made Dave put in some gel. I also think he may have noticed he is cute.

Checking himself out in the napkin holder reflection

Then he wanted to borrow my compact mirror

Vending machine reflection on the wall, who's the fairest one of all? 

I'm da man!

Max hasn't seemed to care that much about his looks one way or the other until now. Maybe that's just a boy thing; one of Sabrina's favorite hobbies is to gaze at her hair in the bathroom mirror. We've had assorted mirrors around the house for Max since he was a baby. Therapists thought they would help him with self-awareness, and motivate him to move his body around.

In recent years, we've thought mirrors might encourage him to notice the drooling, which doesn't seem to bother him. (Although he has told me that when he is a firefighter, he won't drool anymore.) The other day I watched him stare into a mirror in a bathroom and fix his firefighter hat just so. He noticed drool and wiped it. I wanted to squeal, but he can't stand when I do that, so I squeed silently.

Max's newfound self admiration is fascinating to me. I've always thought he's beyond adorable, because I'm subjective that way. I'm glad he's finally noticed. But if he asks to borrow the car to go cruising for girls, I'm saying no.

Monday, June 23, 2014

Packing for vacation, with all that extra baggage

√ Clothes, underwear, socks: check
√ Shoes and sandals: check
√ Overnight pull-ups for Max: check. I wonder when he's going to stay dry overnight. Still, it's awesome that he's potty trained by day. That was a long time coming. It'll happen in time, I hope, like other stuff has. Max has just started going standing up, another one of those milestones you'll never read in the development books but to us was headline news.
√ Toiletries: check
√ Gazillion bottles of sunscreen: check 
√ EpiPen: check
√ Seizure meds: check. We get the compounded kind; each dosage comes in a little silver packet.
√ Diastat in case Max still has a seizure: check. We had his blood checked a few months ago to make sure his body had good levels of the medication, and he's fine. It's been more than nine years since that grand mal. But I still can't get that picture out of my head of Max lying with his eyes half closed on our living room couch with his entire body shaking.    
√ Swimsuits: check. I hope Max will someday learn to swim. The coordination and physical strength required are beyond him right now, but at least he's comfortable putting his head under water and exploring. Sometimes, he puts his arms out, walks around the pool, and he tells me he's swimming. I say, "Good job!" 
√ Goggles: check 
√ Extra goggles for when the other pairs mysteriously disappear: check
√ Beer goggles: Bwaaaaa-ha-ha! Left those in college.
√ Books and magazines: check. We still like the kind you hold in your hands.
√ Mad Libs: check. They're how we pass time in the car.
√ MacBook Air: check. But will try not to use it. But may not succeed.
√ Cars 2 Lighting McQueen suitcase: check. While Max's obsession has now shifted away from Cars 2  to firefighters and fire trucks, he still adores that suitcase. He's had it packed for vacation for months now. A friend recently asked how Max's new thing for firefighters started. I have no idea, same as I have no idea about how he got into spaghetti, car washes or purple. It just comes upon him, and it stays. We'll be hitting a couple of local fire stations on vacation, since that is Max's idea of a Good Time. Visiting firehouses may take a little more time than purchasing Cars 2 merchandise on Amazon or eBay, but it is vastly cheaper.
√ Fireghter hat and outfit: check. The very realistic firefighter suit is from his occupational therapist and, yeah, I had to buy a bunch of red plastic firefighter hats on Amazon—I got the twelve-pack—but that's about as much investing I've had to make so far in this obsession, phew. Hopefully, Max will not request a fire truck anytime soon. Like, a real one.
√ Plugs for iPad and iPhone: check. Max has been obsessively watching fire truck videos on YouTube; he would sit there and watch for hours on end if we didn't pull him away.
√ Headphones: check. Max has been needing these less frequently now when we go to new places, but still wants them on occasion. They're like our restaurant insurance.
√ Cotton bibs for Max: check
√ That thingie we got at Five Below that makes instant slushies when you plop the three frozen plastic ice cubes filled with a mystery, possible lethal liquid into a cup filled with your beverage of choice and shake it, and which causes extreme fights if you only remember to bring one: check!
√ Extreme determination to relax: C-H-E-C-K

Image: Flickr/slolee

Friday, June 20, 2014

The Special Needs Blogger Weekend Link-up: School's out edition

It's another Special Needs Blogger Weekend Link-up, just in time for the end of school, which means you will now have precious little time to yourself and, come to think of it, where's our summer break?! Alert the authorities! Then squeeze in time to read some great posts.

What to do

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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Can Summer Break Last Till Spring?

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

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

Happy linking!

Thursday, June 19, 2014

Why my kids' looks shouldn't matter

"Sabrina is an attractive girl who cooperated nicely during our session," the report read. She'd had an assessment done at school, and that was the first line of the summary.

I'd seen this sort of thing in doctor reports and school evaluations Max has gotten over the years, phrases like "Max is a handsome, healthy appearing boy" and "Max is a good-looking child."

Ordinarily, I will happily take compliments about my children's cuteness. It's good to get affirmation that, as I have long suspected, THEY ARE THE YUMMIEST HUMAN BEINGS EVER. I will gladly gush about any bit of them—hair, skin, freckles—if you mention it (or even if you don't). I do not think experts mention their looks in reports because they're any more beautiful than other kids; I suspect that docs and others often do this to make parents feel good, especially if they are delivering less than great news. 

Still, when I see mentions of the kids' appearance in academic or medical reports, it bugs me. What do their looks have to do with their performance? With their well being? With anything? 

I'm particularly sensitive about this because I know that the opposite—prejudice against people who fall short of societal notions of good looks—can hurt Max, and it has. What about those times when he, or other children with special needs, fail to fit the norms of appearance? People occasionally gape if he drools, as did that woman on the street last month. Sometimes, when he contorts his face into an exaggerated grimace—a muscle spasm from the cerebral palsy—he'll also get stares. The beauty bias can be yet one more societal hurdle that children and adults with visible disabilities have to overcome. 

In a world in which looks matter, appearance should be irrelevant when it comes to my children's health and education, and I'd like to keep it that way. I want the experts in their lives to be all about their development, brains and inner beauty. The most meaningful compliments they can give to me are ones like "Max is a bright child whose articulation is improving" and "Sabrina has an exceptional vocabulary." Although if they want to tell me how amazingly young I look to be their mother, that, I wouldn't mind.

Wednesday, June 18, 2014

A time-lapse video of a dad's morning with his baby with special needs

This. Just, this. Because we know exactly what sort of attention, care, therapy and adoration we lavish on our kids. And this time-lapse video dad Carl Rytterfalk shot of his morning with his son William, who has mosaic Down syndrome, shows it.


Tuesday, June 17, 2014

A cool way to get your kids to read: The Scholastic Summer Reading Challenge

My kids love to ride their bikes in the summer. And swim. And go on weekend road trips. And eat ice-cream. Then eat more ice-cream. Then ask when they can have ice-cream again. Reading has not historically topped their list of Favorite Summer Things To Do. But getting the kids to read in summer just got easier (and more fun for them): Max and Sabrina signed up for the The Scholastic Summer Reading Challenge, after I was asked to be one of the bloggers participating in a sponsored campaign.

The challenge, which goes through September 5, is geared toward kids ages 4 to 14 but it can work it for kids at any level by reading together, as I'm doing with Max. The goal for the challenge: beat last summer's reading world record of 176,438,473 minutes.

Reading is always key, but as the Scholastic folks note, studies show that when kids don't read over the summer they lose core reading skills. Max's reading progress is hard won, so I'm determined to help him keep up with reading this summer. Hopefully, we will not run out of firefighter themed books.

Sign up couldn't be simpler:

The kids had fun choosing their screen names from the list of categories and words. Parents can link accounts to the kids' schools to compete for school awards. Once you're signed up, you get your first challenge; we started on a Monday, and the kids each had to read 125 minutes by Sunday. That's only about 18 minutes a day. So far, the challenges have increased by five minutes each week.

This year's theme: Reading Under the Stars (powered by Eveready). There's good interaction; as the kids reach reading milestones, they can spin a virtual wheel and earn their choice of badges, like this:

One cool way for the kids keep track of minutes read over the summer: the Scholastic Reading Timer, which has a stopwatch. For Max, this has the added bonus of learning about keeping time. 

Over on the Facebook calendar for parents, there are tips, printables and Friday Freebies. There are plenty of book recommendations on the Parents section of the Summer Reading Challenge, with more suggestions for encouraging reading. If you're so inclined, you and the kids can check #MondayMinutes on Twitter to see what the reading count is up to. You can also follow the Summer Reading Challenge Pinterest board

Both kids have enjoyed logging in their minutes—it's motivating—and exploring the galaxy. I'm learning lots, too. Fun space fact: If you left Earth today, it would take you nine months on a space shuttle to reach Mars. If you wanted to hit Neptune, it would take you 12 or more years. So if your family ever makes you lose it and you decide to run away from home, you're best off avoiding outer space.

As kids rack up reading minutes, they click on constellations to learn how to spot them in the sky and get interesting facts, relayed on video by astronaut Leland Melvin. On the day we found out that Pisces looks like two giant fish with their tails tied together by a giant ribbon, and that you should look for a ring of seven stars to discover the first fish, we headed out to the back deck that night and found them. (There's a handy Star Constellation PDF to download). Max insisted that he saw a fire truck in the stars, and who was I to argue? 

This post is sponsored by Scholastic, but opinions are my own.

Illustration of girl reading under the stars: Scholastic Inc.

Monday, June 16, 2014

Watching a chick hatch is more zen than tweezing your eyebrows

Sabrina and I stood in front of a glass case, awed, watching a chick peck it's way out of a shell. We were in Chicago for a girls' weekend, and spent an afternoon at the Museum of Science and Industry. We'd been to the Earth Explorers exhibit (about the pros who explore exo-zones like oceans, polar regions and rain forests), we'd seen the Flight of the Butterflies in the Omnimax Theater. Sabrina had stood inside the vortex of a 40-foot tornado, heard how her voice might sound when she was 80 and marveled at a gigantic model train.

But we couldn't take our eyes off the eggshells in the Baby Chick Hatchery. There were about eight in the case, several already split open with damp-fuzzed chicks wandering around, dazed. A few had flopped down for naps, completely exhausted. Another little bird was making his way out. He was doing it on his own sweet time—a few pecks, then nothing for a few minutes, then a little more. 

I couldn't remember the last time I had focused on something like this. I mean, yeah, I focus on writing when I blog and the editing I do at work. I focus when I read. I focus when I do crafts or bake with the kids. And, oh joy, I focus on my eyebrows when I tweeze them. (Trust me, the fact that I find plucking so zen scares me.) Mostly, my mind's on a million things. I'm forever thinking about what I have to do next. 

I only took a few photos of the chick, no video, no Facebook sharing. I wasn't in a rush to get anywhere. Sabrina and I just stood there and watched in fascination for a good 15 minutes. We were both immersed in that chick's emergence into the world, and it was wondrous.  

Friday, June 13, 2014

The Special Needs Blogger Weekend Link-up: Father's Day edition

Here we are, another Special Needs Blogger Weekend Link-up. In honor of Father's Day, let's all vow to avoid reading through these posts on Sunday. However, it is perfectly fine to stay glued to your computer, read all the posts and ignore your family on Saturday.

What to do

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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: It's Chocolate Ice-Cream Season!

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

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

Happy linking!

Wednesday, June 11, 2014

Why we can't do the morning rush at our house

Mornings at our house are much like mornings in the homes of working parents everywhere: We're scrambling to get out the door. But when you're raising a kid with special needs, there are times when it's just not possible to rush.

Max usually wakes up first. Sometimes, he'll come into our room and politely ask Dave to get out of bed, by which I mean he shouts "EH UH!" ["GET UP!"] Then Dave will plop Max down and he'll watch Disney Jr. for a bit. Sabrina gets dressed on her own—or, rather, she puts on one outfit, then another, then another. Next she brushes her hair, tries eleventy billion hair accessories and rejects them all. Then she chooses another outfit. Meanwhile, Dave and I jump in the shower. When I come out and look at the clock, it's suddenly clear that we're running late.

Every single morning, it's like we have never done this before.

We can get Max dressed pretty fast—he's not yet up to putting shirts or pants on himself—but getting on the braces and shoes on takes a good five minutes. He settles down to eat breakfast, steel-cut oatmeal with cinnamon. When he was a tot, I couldn't imagine him feeding himself: He wasn't able to grasp a spoon, plus most of the food dribbled out of his mouth and I'd have to spoon it back in. Now he eats really well on his own, so we can leave him to it as we run around like headless chickens shouting things like "Where are my house keys?!" (me) and "Honey, I am going to be home late tonight because I have to take a client to dinner!" (Dave) and "Why can't you do more working lunches?!" (me).

Meanwhile our sitter, L, shows up; she's been with us for 11 years, and she is the closest human entity to a saint I have ever met.

The other morning was the usual scene. "Sabrina! I have to catch my train! We have to leave sooooooooon!" I shouted up the stairs, because she'd gone off to brush her hair again.

"Two minutes, Mommy!" she promised.

"Hi, Ohmmy!" Max said when I walked by the table.

"Hi, Max!" I said.

"No!" said Max. "Ire-ann!"

I'd forgotten: He only wants to be addressed as "Fireman Max."

"OK, hi Fireman Max!" I said.

"Hi, Ohmmy!" he answered, and returned to eating his oatmeal.

Several minutes later, he announced "I aaahn ooh eee a ire-ann!" ("I want be a fireman!"), just in case I'd forgotten from when he said it a few minutes before.

"Yes! You're going to be a fireman!" I said, anxiously watching the clock.

Then he said something to our sitter that neither of us understood.

"Honey, can you say it again?" I asked.

Max repeated it. We looked perplexed. He repeated it again.

"Ice-cream?!" L guessed.

"No!" said Max.

"Water?" I said to him.

"No!" said Max.

"Sabrina! We have to go now!" I shouted.

"Coming!" she said and clattered down the stairs. Dave headed out to the car.

I really had to go catch my train to work. Only Max wanted me to understand something, and I couldn't just take off. There has to be time not just for dressing and eating but for understanding.

One of the hardest lessons I've learned as a special needs parent is that there's no rushing things along. You can't make biggie developments like walking, speech and comprehension happen any sooner than they are meant to, no matter how hard you try or how many tears you cry. You can't press a child to pick up toys with both hands, kick a ball or walk up stairs until his muscles and coordination are up to it, whatever his age. You can't coax a child who's fearful of noise and crowds go to birthday parties or unfamiliar restaurants, because he just won't be able to deal until (and if) his sensory issues abate. You can't hurry a child to learn to say "I love you." You can't get a child to potty train until he's truly ready. You can't speed up reading or doing math. Our kids are on their own timelines, and all we can do is get them as much therapy and as many resources as possible, guide them, cheer on their inchstones and encourage them to keep trying as best they can. (And then find a healthy outlet for letting out our fears and frustrations, plus maybe eat too much smoked Gouda cheese late at night.)

I pulled Max's iPad out of his backpack. He typed two letters on his Proloquo2Go speech app: Dr.

Aha! "Max! You want L to be a doctor when she gets older?" I asked. Besides figuring out his own job aspirations, lately Max has been giving other people career advice.

"Eee-yah!" Max said, happily. He looked at me: "Leeese!"

I knew what he was saying: "Oh, and I'm going to be a policewoman?"

"Eee-yah!" Max says. (For the record, Sabrina is going to be a chef and Dave is going to be an astronaut).

"OK! Right now, buddy, I've got to go get my train," I said, kissed him and ran out the door.

"Bye, Fireman Max!"

"Eye, Ohmmy!"

Photo: Flickr/Arielle Nadel

Tuesday, June 10, 2014

Max's speaks his best sentence ever

Max has been speaking in sentences for some time now. It's not always easy to understand what he's saying, so he'll use his speech app to make himself clear. But there's one sentence he's been articulating again and again lately that is amazingly intelligible, and it gives me major hope for his speech.

As tiring as it is to keep repeating "Yes, you want to be a fireman when you grow up! And you will live in the firehouse!" it's looking like the fireman obsession could be really beneficial, far more so than his Lightning McQueen phase. The wonderful OT who sees Max at home, Cristy, got him this fireman outfit to help him work on dressing skills (and she also put his obsession to good use during a recent therapy session). I've shamelessly used his fireman fascination to persuade him to do stuff.

But The Sentence is the best thing of all: "I want to be a fireman when I grow up." Never have I heard Max say anything so comprehensible on his own, outside of speech therapy sessions. When he really focuses on enunciation, he does a lot better. It also helps that he's repeated the phrase a bazillion times. I think there's something else going on here, too: So intensely does he want people to know of his fireman aspirations, that he is determined to make himself heard.

Monday, June 9, 2014

I went to reunion and all I got was a t-shirt, and some priceless stuff

I spent this weekend at my college (Brandeis) reunion. Amongst my many deep thoughts (is that the same dresser that was in my dorm back then? How is it possible the food is still so mediocre? Why didn't anyone tell us our hair was so BIG?) were these: There's nothing like hanging out with old friends, and finding others who also have children with special needs.

My friends Wendy and Hedy and I had decided we'd go without our husbands and kids. I drove up Friday, and spent part of the afternoon roaming the campus alone. It felt surreal. In some ways it seemed like I had only recently been there, so familiar were certain parts. There was the suite I lived in freshman year with 15 other girls—one phone, one good shower, one lousy one. There was the building where I got my mail, ate lunch and worked in the bookstore. There were the stairs I'd climb daily to classes. There was the library, where I did more socializing than studying. All of it, so ingrained in my memory. Only it's been a couple of decades since I graduated and, as one friend said, we've lived a lot of lives since then.

Castle dorm (it's not fancy inside, in case you're wondering)
Ten years ago, Dave and Max came to my reunion. I remember getting melancholy about how carefree life had been in school. I felt a little sad seeing other parents with their toddling kids and Max, at one and a half, still not crawling. I was aware that people had heard what had happened to him. At a breakfast, I was tossing Max into the air because it made him giggle and someone I knew glared at me and said "Be careful!" as if I was going to break him more than he had been.

This time around, I was in a much better place, and psyched to be away with friends. How often does that happen?! We stayed up late in the hotel room talking, just like in school. I discovered that I am a bed hog and that I snore and laugh in my sleep, something good friends will delight in telling you but, evidently, not your husband. At the reunion events, it was good to hear what people were up to, and interesting seeing how they looked (wrinkle compare-a-thons: inevitable). With some friends, it felt like we picked up the conversation where it had left off years ago. I laughed so hard taking photo booth pictures, I cried.

At a BBQ lunch, I introduced myself to a dad who I'd heard had two kids with cerebral palsy. At a dinner, a woman came up to me and said hello; we have two mutual friends I know from blogland. I knew who she was, though I don't think we'd ever spoken in college. She has a son with autism, and she mentioned other classmates who have kids with autism. Then she and her husband told me about their son's bar mitzvah, and it gave me real hope for having one for Max.

I'd had the warm-fuzzies all weekend—being around old friends completely reboots your spirits. But the insta-connection you have with other special needs parents is its own kind of heartening.

I had to leave early Sunday morning to get to Sabrina's dance recital. I packed up quietly and crept out the door as my friends slept, then I drove home feeling happy. College-like lighthearted. And I don't think it was because my hair was less big.

Friday, June 6, 2014

The Special Needs Blogger Link-up: Get your post on

This is the Special Needs Blogger Weekend Link-up, beaming rays of goodness at you from my little old computer.

What to do

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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I Have The Outfit, So Now I Am Really A Firefighter

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

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

Happy linking!

Thursday, June 5, 2014

The best gifts to give a baby in the NICU

"I've been trying to get some projects going that I've had in mind for years," the email read. "I want to make or do something for the parents with babies in the NICU. What are some of the most helpful things someone did for you or you received while Max was in the hospital? I know I've seen people talk about blankets for older children, but I as wondering what the parents of those tiny babies could use most."

My answer for the best gift for a baby in the NICU: Dr. Suess's "Oh, The Places You'll Go!" It's the book my friend Wendy brought while Max was in the NICU. I needed hope. I needed something to do as Max lay in the incubator and I sat beside him, despairing and feeling helpless.

The first time I read the book to Max, speaking through the holes on the side of the plastic box that held him, I could hardly get the words out because I was crying. But I forced myself, in a whisper:

Congratulations! Today is your day. You're off to Great Places! You're off and away!

After that, I read the book to Max a couple of times a day during the two weeks he was at the hospital. Once, I read it so enthusiastically that a nurse told me to keep it down and I said, "So I guess you don't want me to bring a mic next time?" That made both of us smile. Laughing felt good.

What meaningful/helpful gifts did you get while your child was in the NICU?

Wednesday, June 4, 2014

The very cool Father's Day gift hiding in my basement (nobody tell Dave)

Dave's getting something he always wanted for Father's Day. It is not a Lamborghini, a boys' trip to Vegas or a month of me not pestering him to fix stuff around house. It's a wine cooler, which he's always wanted. So I was thrilled to get a NewAir AW-181E Bottle Thermoelectric Wine Cooler to check out.

I've put it in the basement in the laundry area, which means there's zero chance Dave will discover it until the big reveal on Father's Day. I'm planning to keep it in our dining area; the design is sleek, with a stainless steel exterior and LED lights inside, so it's the sort of appliance you want to display.

As compact as it is (29 inches high), there's room for 18 bottles of wine. You can reconfigure the five removable, sliding racks to fit your needs; if you turn them over, they can fit larger bottles. The door is insulated, and there are simple push-button digital temperature controls. What it lacks: a compressor. This is thermoelectric cooling, and it's quiet and vibration-free. You can set the temperature from 54 to 66.

Just for a joke, you could fill one up with juice boxes and tell your husband you've bought a juice box cooler.

Enter to win one for your partner! 

I'm giving away one NewAir AW-181E Bottle Termolectric Wine Cooler, worth $199. Enter via the form below.

This contest is open until June 14, 2014, at 12:00 p.m. EDT (Father's Day), and the winner will be announced here. Open to legal residents of the U.S. To enter, leave a comment below about what type of drinks you'd put in your cooler; you can also follow NewAir on Facebook and Twitter for extra entries or tweet about the giveaway. For the complete rules, click Terms and Conditions below.

a Rafflecopter giveaway

Tuesday, June 3, 2014

The Supreme Court ditches the term "mental retardation"

After I write this, I will head over to the YouTube video I posted in 2012, Would You Call My Child A Retard?, to delete comments like "He's a retard, no matter what you call him." I do this several times a week.

For anyone who doubts how loaded the word "retard" is, just keep an eye on those comments. The haters make it very clear that the word is a cruel take-down. Even when people use it jokingly ("I'm such a retard, I left my phone at the restaurant!") it's demeaning, because it perpetuates negative perceptions about people with intellectual disability.

Last week, the U.S. Supreme Court ruled that Florida's approach for relying on IQ scores to determine whether prisoners with intellectual disability should be executed constituted "cruel and unusual punishment," a violation of the Eighth Amendment. As Justice Anthony Kennedy said, "Intellectual disability is a condition, not a number." As part of that that decision, Justice Kennedy also clarified the terminology: "Previous opinions of this court have employed the term 'mental retardation.' This opinion uses the term 'intellectual disability' to describe the identical phenomenon."

The paragraph goes on to mention Rosa's Law, the 2010 legislation named after Rosa Marcellinos, a girl in Maryland with Down syndrome whose parents were tired of hearing the word "retard." That law abolished the use of "mental retardation" and "mentally retarded" in federal health, education and labor policies. The Social Security administration quit using the terms in March 2013. Meanwhile, the Special Olympics' "Spread the Word to End the Word" campaign has been ongoing since 2008.

When you speak out about this, as I and many other parents have, some people note that medical professionals and even school districts still use the term "mental retardation." I see it occasionally on forms I fill out at medical centers. They're all behind the times.

Other things I keep hearing:

"You parents are too sensitive."
Reality check: This is my kid, and I will do anything I can to help make society more open-minded toward him. An ask like this doesn't seem like such a big deal. I'm not hoping people will contribute money or time, just consideration—and a more accepting attitude toward people with ID.

"Words only have the power you instill in them."
Reality check: A word that equates people with ID with being stupid or loser-ish is a pretty potent—and nasty—word.

"People have freedom of speech."
Reality check: Since when is it OK to use slurs?

"Asking people to change the words they use isn't going to help your kid; you should focus your energies on other efforts."
Reality check: Using more neutral terminology to describe a person with ID, when they need to be described at all, is just one more way to respect them. Not the only way, of course, just one. An easy one. 

But don't just take it from me or other parents or, heck, the Special Olympics. Now, the Supreme Court is on our side. 

Related posts:

Monday, June 2, 2014

Max takes a walk I will never forget

It was a glorious day yesterday—not too hot, no humidity, sunny, nobody was whiny. Early evening, Max was wheeling a stroller back and forth in front of our house as I trimmed the hydrangea bushes, which took a beating this winter.

It's a Maclaren adaptive stroller one of Max's physical therapists gave to him years ago. He can still fit into it and once in a while, if we're going for a long walk, we take it with us in case Max gets tired. Mostly, though, Max just likes wheeling it around. 

A cool couple from the next block and their kids came down the block. Max went over to tell them about his fireman aspirations. Lately, he wears his plastic red Fire Chief hat all the time except for sleeping and school and (with some convincing) bath time. I was busy hacking away at dead wood and wasn't paying much attention, other than when the little girl pretended to be on fire and Max started chasing her making siren sounds which made me smile.

Then the family started to head off. Max trailed after them. "We're going for a walk around the block," I heard the mom say.

"Max, stop," I said. I needed to finish fixing up the bushes before dinner or they'd never get done, and didn't have time to go for a walk.

"Oh, he can come with us," the mom said.

I was a little shocked. Because never has another parent in our area offered to let Max come along for a walk with their kids. Never. It's not that the other neighborhood moms aren't nice—they all are. I think they just may be hesitant to handle a kid with special needs. But not this mom, not this time.

"Are you sure?" I asked.

"Yes!" she said. "No problem."

She, her husband, their two kids and Max went off as I stared, awestruck, processing what had just happened. What may have seemed uneventful to this mom was a major moment for me and for Max, too.

Either Dave or I are always with Max when he's out; he's not a kid who can just go knock on another kid's door or cruise around the neighborhood with other boys. This is our life, and I usually don't think twice about it except in early spring, when all the kids start playing outside.

Standing in our front yard, though, I mulled over how for the last 11 years I've always been by Max's side when he's at play. As a toddler, he never did floor time alone—Dave or I were there with him, helping him play. As an older kid, he still needs a hand with playing, painting, getting together with other kids or whatever fun is involved. Granted, he will happily sit alone in our living room glued to the TV or firefighter videos on YouTube, but we limit his time because otherwise, he'd watch for hours on end. (Max is fully capable of snagging the Guinness Book of World Records title for Longest Length of Screen Time by a Child.)

It's only recently that Max started playing alone. A couple years ago, I got him a Lightning McQueen computer and lately he likes sitting in his room and using it. I have to say, it's been a relief to see him doing that. It is a heavy responsibility to constantly engage and enable a child.

Yet there Max was, rounding the corner with the family. I was thrilled. I thought about how it was so good for Max's independence to know that he didn't have to rely on just me and Dave. I wondered if he was going to try and sucker them into walking to town for ice-cream, as he often convinces Marshmallow Daddy to do.

Maybe 10 minutes later, they returned. Max wanted to go into their house with them, so I headed over to lure him back because it was dinnertime. After a little persuading, he came.

"Thanks!" I said to the mom, when what I really wanted to do was throw my arms around her and give her a great, big hug.

Image: Flickr/ColinCarmichael

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