Friday, January 31, 2014

Special Needs Blogger Weekend Link-up: Cabin fever edition

It's the Special Needs Blogger Weekend Link-up, the cure for cabin fever. Well, that and getting your significant other to take the kids OUT.

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

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: Happy Unbirthday To Me

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, January 30, 2014

Jobs for people with disabilities, and a flash of hope

As I was standing on line in CVS the other day, an elderly woman walk in with two teens who had special needs.

The woman said, "We should go put our jackets in the back room."

Hmmm. They worked at the store? I had to know.

"Do they have jobs here?" I asked.

"Yes," she said, but then she got distracted because the girl had started walking away down an aisle.

The boy stood nearby and waited. "We've got to know what to do!" he said, to nobody in particular. I smiled at him.

The lady and girl returned. I persisted.

"Are they here as part of a program?" I asked.

Yes, she said, through a local high school.

"I ask because I have a child with special needs," I said.

"How old is he? Where does he go to school?" she asked.

I told her. I explained that Max will age out of his school at 14, and we'll need to find a high school for him.

"Make sure they have a jobs program," she advised.

The girl looked at me. "It's my birthday!" she said.

"Happy birthday!" I said. "You work here, right?"

"Yes!" she said, proudly.

"What exactly do you do?" I asked the lady.

"I'm a job coach," she said. "I'm here to help them understand how to work. You should make sure your son's high school has one of those, too!"

I felt a rush of excitement. I loved hearing that a high school had a job program like this, ditto for CVS—and that coaches exist to help young adults along.

By then, it was my turn at the register and when I flipped open my wallet to pay, the girl spotted a photo of Max in the plastic sleeve.

"Oh, he's so cute!" she said.

"I have to agree, he's cute!" I answered. "He has cerebral palsy."

"What does that mean?" she asked.

"It means sometimes it's hard for him to use his hands and speak," I said.

"Are you going to teach him how to speak?" the girl asked.

"I try!" I said. "I hope someday he speaks as well as you do."

With that, the lady and the girl walked away. "Be careful what you wish for!" the lady said, laughing, and I got the impression that the girl was a big talker.

I walked back to the car, smiling. Once, I'd had a moment in Whole Foods when I watched a woman with Down syndrome clean tables. Even though she'd seemed content, I'd wondered sadly if that was what the future held for Max; I couldn't help but project my own idea of what a "good" job was onto him. But it's been awhile, and I am at a place where it genuinely makes me happy to hear about stores and companies that have work programs like this for people with disabilities. Having choices is a good thing.

Weeks ago, I read an article about a Tim Horton's franchise owner in Canada who has a longtime history of hiring people with disabilities, and who's been urging other businesses to do the same. It's the only story of its kind I've seen in long time. I am not talking about small businesses or non-profits that center around employing people with disability, like The Harvest Cafe we once visited in Staten Island. I mean major businesses.

These days, with so much new technology out there enabling people with disabilities, you'd think there would be more work opps for them. But mindsets are far slower to make progress than machines are. Per the Office of Disability Employment Policy (ODEP), in December labor force participation was 18.7% for people with disabilities, 68.3% for those without. The unemployment rate was 11.9 percent for people with disabilities, 6.3 percent for those without.

ODEP has an ongoing What Can You Do? campaign, geared toward inspiring people with disabilities to find work and encouraging employers to hire them. There's also a "What Will You Do?" section for youths. It states, "Understand your right to be judged on your ability, not disability." A-men.

Max is 11, so it's not like I have to buy him an interview suit anytime soon. (Although if Disney is ever looking for a Lightning McQueen merchandise specialist, Max is their man-kid). There's plenty of time to look into resources, plenty of time for more options to crop up—and for attitudes to adjust. I refuse to let myself worry now about how Max will make his way in the job world, because it's futile.

But I so love hearing about possibilities.  

Image source: Sean Moline Photography

Wednesday, January 29, 2014

And then, the birthday wars erupted

"Isss eye irthay ooh!" said Max. Translation: "It's my birthday too!" He started saying that from the second he woke up yesterday, Sabrina's birthday.

I gave Sabrina her present:

Two tickets to see Katy Perry

Sabrina was so ecstatic, she literally did a happy dance. "Isss eye irthay ooh!" said Max. I didn't engage—I needed to get dressed for work and I didn't have time for him to get upset, even though it wasn't fair to Sabrina for him to claim it was his birthday. Bad Working Mommy.

When I got home, Sabrina told me that our sitter put a candle in some ice-cream and she and Max sang Happy Birthday. Then the sitter did the same for Max. "It's my birthday," Sabrina said, pouting. I didn't blame her. "Yes, it's only your birthday," I reassured her, and went off to find Max.

"OK, Max, you know it's not really your birthday today," I told him.  

Tears filled his eyes. "No! Irthay!" he said.

"Come on, Max, when is your real birthday?" I asked.

"Oooh-ay!" he answered. ["Today!"]

"Max, what month is your birthday in? Is it July? When?"

He looked at me and said December. Oh, he knew it. In fact, he's already planning next year's birthday (involving a clown and Lightning McQueen and the purchase of one Cars TV set and yes, that exists, unfortunately) and he knows full well it's not coming around anytime soon. 

"So Max, today is your pretend birthday, but it's Sabrina's real birthday."

He seemed dubious, but placated.

And then, a few minutes later: "Isss eye irthay ooh!"  

Sabrina said, "Yeah, it's your 'birthday!'" and did finger quotes, and I had to stifle my laughter. 

"Max, it's your pretend birthday," I repeated. He shot me a look and wandered off.

Minutes later, I heard Dave downstairs singing "Happy birthday to you!" Only Sabrina was upstairs with me; he was singing it to Max. Sigh.

The two of them came back up. "I don't think you should be encouraging him like that," I said, hypocritically, given that my silence that morning essentially counted as surrender.

"I'm really tired and just needed to make sure he went to sleep easily," Dave answered. Bad Working Daddy. 

To remedy the situation, kinda sorta, I sang to Max:

Happy pretend birthday to you,
Happy pretend birthday to you,
Happy pretend birthday to you,
Happy pretend birthday to you!

With this kicker, sung to the tune of "and many more"
Yours is in December....

"ROAR!" responded Max, and not the kind heard in the Katy Perry song. 

Later, after Max was tucked in, Sabrina wandered in to kiss him good night, as she's been doing lately. (Swoon.) "Isss eye irthay ooh!" said Max. She didn't correct him. 

So basically, we're all enabling Max and his magical/delusional/egocentric thinking. 

Although maybe it's not so bad to live life thinking you have multiple birthdays. Certainly, there are far worse offenses, although the ideal is to not take over your sibling's b-day. Dave's birthday is coming up in March; we'll see how that goes.

Tuesday, January 28, 2014

Birthday love for my other special child

Yesterday, Sabrina told me what to buy for her birthday party at school: four boxes of donuts. "OK, so you want donut holes?" I asked. "Yes, mostly," she informed me. And then, using her fingers for emphasis, she listed the amount to pick up: "TWO boxes of powdered sugar donut holes, ONE box of chocolate holes and ONE box of mini donuts. Got it?" 

I had to smile, because it's just one of the many things that is special about Sabrina: She knows exactly what she wants. Today is her 9th birthday. Last night, we lay in bed together and I told her all about the day when she was born: That the doctors kept delaying the delivery (I'd had a C-section scheduled for the morning but kept getting bumped by emergency ones), that I got so bored in the hospital I threatened to leave and see a movie, how when she finally emerged before midnight Dave was so awed all he could think to say was, "Her fingernails are so long!"

I know one day Sabrina will read the blog (if you are reading this now, honey, go do your homework!) and I want her to know that although it's focused on kids with special needs, she is every bit as special. 

Sabrina's a can-do child. The day after we had the Girl Scouts Cookie sales sheet in hand, she hauled me out to go door to door; she's determined to get one of the big prizes. (Last year, she cleverly asked if I'd be interested in ordering another 1800 boxes of cookies so she could get an iPad.) Recently, she reorganized and rearranged her room, because she wanted it to look better. My mother might recall the time when she left my sister and me home alone and I convinced Judy to yank up all the carpeting in our room, which I thought was ugly, and bring it to the trash. 

Sabrina's taught herself how to make all kinds of Rainbow Loom creations (an entire glove!) and drawings just by watching YouTube videos. She's taking violin and jazz dance, and she's good at them. She likes demonstrating the routine she's learning for her dance recital when we're in the kitchen. Or she'll put on some music and bop around the living room alone, making up moves. I'm not supposed to look, but I do.   

"Mommy, I played that really well, didn't I?" she'll ask after she's finished a piece. I love that she knows it.   

She's recently gotten into reading; the Magic Tree House books hooked her. She also likes biographies, particularly ones from the Who Was series. I'm particularly proud of her newfound love of books. I was a library geek as a kid; I used to take out 10 books a week, and plow through them. I told that to Sabrina once and she called my mom to make sure it was true. 

Some days I feel like she is far older because she's so precocious. The other day, I sighed a deep sigh after I hung with (what else?) the insurance company and she noted, "Every day is a different stress!" And yet, as mature as she's getting, she is still plenty delicious; I like to nibble on her cheeks and dimpled hands. Her hair has beautiful auburn highlights, the kind women pay a lot of money for at salons, and she has a spectacular splash of freckles across the bridge of her nose and her cheeks. Did I mention the cheeks? Yum. When she smiles her entire face lights up. I got that look yesterday when I served lunch at her school, and it put me on a mommy high.

Sometimes, other moms ask if we ever hesitated to have a second child because of the trauma we went through with Max. We never once did. We both love children, and couldn't wait to have another. We couldn't have imagined how special she'd be.

Monday, January 27, 2014

Turns out I've been giving my kid too much attention

Giving your kid too much attention comes with the special needs parenting gig. Max needs assistance with everything from drinking to dressing. But recently, I got the memo about overdoing it.

Max screeches, loudly. It literally makes my heart beat faster. You know that scene in Monsters, Inc. in which Boo screams so loudly after Mike snatches her teddy bear from her it makes the lights flicker?

Yeah, that.

The screeching used to go on for ten to fifteen minutes at a time, mostly when Max was tired or having a sensory meltdown. He'd do it anywhere. Now he only screeches at home and they're shorter and more pointed, though just as charmingly ear-splitting. They're usually in reaction to his hearing something he doesn't want to hear. (As in, "No, you can't watch Despicable Me 2 a second time.") My instincts have been to try and calm Max down, because that is what I am used to doing: helping him, as best I can.

Finally, I had a conversation with Max's pediatric neurologist about the screeching. He's both wise and realistic, a winning combination in a doctor. "Break the cycle by doing the opposite of what he wants," he told me. "If you stand there and listen to him screech, he's getting the reaction he's seeking. So the next time it happens, simply say 'thirty seconds,' leave the room and come back in thirty seconds. If it happens again, increase the time—say 'one minute,' leave the room then come back when time is up."

No need to explain anything or further engage. I just needed to leave.


I've been trying this, and I've had some success. I've had to go up to five minutes, but the screeching peters out. Sometimes Max follows me out of the room and keeps yelling, and I'll duck into the bathroom or just not engage or make eye contact. He gets so amused by my attempts to ignore him that he starts giggling. Not exactly how this is supposed to work, but it works.

Parenthood: You never stop learning, do you?

Image of Boo: Screen grab, Monsters, Inc.

Friday, January 24, 2014

Special Needs Blogger Weekend Link-up: Come on in, the water's fine

It's the Special Needs Blogger Weekend Link-up. Take the plunge and share a post.

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

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: My Sister Is Being So Nice To Me! What's Up With That?

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, January 23, 2014

Hydroplaning through life, and grounding myself

I remember when I first heard the word "hydroplaning," back in high school. I was in Drivers Ed on a rainy Sunday morning, and the morose-looking but sweet teacher was explaining what the word meant: When there's a wet surface on a road, a layer of water can build up in front of the car wheels so that they roll on top of it instead of hitting the pavement; since there's no grip, a car can skid out of control.

I've thought about the word a lot during parenthood, because I often feel as if I am hydroplaning through life: always rushing to do something, rarely feeling grounded. I like to joke that I often don't have much time to think, only it's not a joke.

One thing that helps: browsing through photos I snap of the kids. I'll sit there and scan my iPhoto or iPhone, relishing not just the cuteness and happiness but what happened, too.

Yesterday, I took an iPhoto break from work and found this photo from Max's school holiday concert. His awesome teacher had made a video of the kids baking a chocolate cake, and invited parents to the classroom before the performance to view it. Max in a baker's hat = adorable. Max cooking = amazing. Yet this photo says so much more.

Max turned to find me in the crowd of parents so he could see my reaction to his first appearance in the video. He knew I'd have this big, dippy grin on my face (I did). He knew I'd do a little fist pump (I did). He wanted to share the moment, and take in my pride.

There is all sorts cognition and connection happening in this photo.

I sat at my desk, pondering that afternoon at Max's school. I had enjoyed it while I was there, but now I was savoring it. My mind wasn't careening from one thought to the next, as it usually does. It was focused on a moment that really mattered.

I'm not one to do yoga or remember to take deep, restorative breaths. But photo zen: I am in.

Wednesday, January 22, 2014

A reminder of special need parent powers

I recently read an awesome story about a grocery store in Wisconsin that purchased a special shopping cart for a customer with cerebral palsy.

The customer is William Hundsrucker, and he is one and a half years old. His mom, Sandy, sent an email to Festival Foods in Suamico, along with several other local grocery stores. Shopping with him was hard, she said, because regular shopping carts don't offer proper support for a child with little neck control. Just getting him into the cart was tricky.

Sandy recommended that the store purchase a Caroline's Cart. The $850 accessible cart was created by a mom of a girl with special needs, and named after her. The arms open for easy loading, the seat tilts back to accommodate children with low muscle tone, a five-point harness keeps them secure and there's a platform to rest feet on.

Other stores told her they forwarded her email to corporate, Sandy has said. Festival Foods readily agreed to get the cart. Said Hundsrucker, "My son's not the only special needs child around the area. I knew it could help many families and thought it's worth a shot and within a week it was here. It was amazing."

So there it is, a happy ending and a little reminder: Ask. Just ask.

Tuesday, January 21, 2014

A little talent competition

Sabrina is a Rainbow Loom master. Yes, this glove is made entirely of those itty-bitty rubber bands. She did it by following instructions from an online video, as she's done for most of her creations. She's also made a rubber band iPhone cover, and bracelets galore. I joked on Facebook the other day that next, she's going to attempt a Rainbow Loom dress.

We were discussing this in the car the other day, where we have some of our best conversations. Sabrina asked, "Isn't my glove amazing?" Years ago, I read that when you compliment a kid rather than generically saying "It's great!" or "That's awesome!" it's more meaningful to give details, and so I do.

"I love the colors you chose," I said. "And I'm so impressed by how consistent and neat all the stitching is!"

"Mommy, could you have done this?" Sabrina asked, holding up a gloved hand.

"Well, I was pretty good at making potholders when I was little, but this is pretty advanced handiwork," I told her.

"Could Max make this?" she asked.

"With help he could make a bracelet, but I don't think he's at the point where he could do this by himself," I said. Max's fine-motor skills are still coming along, and weaving little rubber bands together would be his idea of torture.

Sabrina knew Max couldn't have made the glove or me, either—she just wanted affirmation. I understood. It's nice to be the only one in the family with a particular talent. Growing up, I loved being the kid who could play piano.

Max may never rival Sabrina's looming prowess, but she knows he has his own talents. For one, Max has the best memory of us all. Sabrina and I talked about his powers of recall, which are particularly hard to miss when he's telling me I'm driving the wrong way to get somewhere (and he's right). The other day, Max pointed to a pet store and reminded me I once took him there.

"That was seven years ago!" I said. "Your memory is amazing."

"Wow," said Sabrina, duly impressed.

Later, I headed to Five Below to replenish Sabrina's supply of rubber bands. At $1 for 300, I'll only have to take out a small loan if she does decide to make that Rainbow Loom dress.

Monday, January 20, 2014

Video: A dad's journey with a son who has Down syndrome

"And then, little by little, the Down syndrome disappeared and Luca appeared." That's Pablo Poncini talking about his son, Luca, 13. They live in Argentina. The 1000 Miles of Luca, a video about a road trip the pair took through the glorious Patagonia mountains, is getting good attention online.

An advertising executive, Poncini was approached to do a campaign on including kids with special needs. He chose to make it personal, sharing that he fainted when he learned his newborn had Down syndrome. In the 9-minute video, he and Luca look like any father and son enjoying time alone. The two send an awesome message: Kids with DS may seem different but to their parents, they are like any child.

Bet you can relate.


Screen grab: The 1000 Miles of Luca video

Friday, January 17, 2014

Special Needs Blogger Weekend Link-up: Do the write thing

It's the Special Needs Blogger Weekend Link-up. You know what to do—share a favorite post, then send me some chocolate. Or just share a favorite post.

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

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: Does Disney Have A School I Can Go To?

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, January 16, 2014

Evil mom, for a good cause

Max has never seen a show in an arena. Once, Dave tried to take him to a football game, but Max was too terrified to even step into the entryway and they quickly left. A gigantic crowd, loud sounds and a humongous new place are one scary combo for a kid with sensory issues.

Then Disney on Ice came to the Prudential Center, an indoor arena (darkness = scarier yet). Still, I knew Max would love it, if he could push past his fears. After all, he'd seen a movie at an indoor theater for the first time last summer and Disney Junior—Live on Stage! in December. So I decided I was going to lure him there. [Insert evil cackle here.]

I repeatedly showed him Disney on Ice videos on YouTube.

I said the following sentence at least eleventy billion times: "Max can wear his headphones to see Disney on Ice!" (Max is all about repetition, you may recall.)

I tried reverse psychology: I told him he could stay home, and I would just take Sabrina.

I hummed "When you wish upon a star." A lot.

I promised we could leave if he didn't like it (either Dave or I would stay with Sabrina, and the other would hang with Max outside the arena).

Max said yes, he'd go. I kept checking back. He kept saying yes. Before I left for work yesterday morning, I must have asked him at least five times.

On the way home last night, I called Dave and said: "Remind Max he can wear headphones! Then remind him more!"

Max put on the headphones before we even got in the car.

He wavered when he saw the arena. Dave and I each held his hand and nudged him in.

He got distracted by a new red car on display in the lobby; it seemed like he might want to sit inside it instead of see the show.

And then he walked into the arena, right as Disney on Ice started. Mickey! Minnie! Chip and Dale! He wouldn't go to our seats; he wanted to stand in the back and watch.

He saw the entire show. Mesmerized. Didn't take his eyes off the entire time. Sabrina was enchanted, too. She said the girls looked like they were wearing cut-off dresses.

When it was over, Max didn't want to leave. He would like to see another Disney on Ice, ideally one with Lightning McQueen.

Evil mom: Maybe not so much.

Wednesday, January 15, 2014

15 learning milestones that thrill parents of kids with special needs

1. Your child says a new consonant, sound or word. A whole sentence? Alert the Internets!
2. Your child discovers a new way to make his wants and needs known, whether gesturing, shaking his head, using his eyes or tapping on a speech app.
3. Your child finally gets what it means to engage on a playdate.
4. Your child learns to stay away from danger, like a hot stove.
5. Your child learns how to photobomb.
6. Your child asks if he can stay up 5 minutes longer, demonstrating both a grasp of time and the ability to manipulate you. Wheeee!
7. Your child starts saying "Sorry" appropriately.
8. Your child goes to the fridge and chooses what he wants. Asserting independence: an amazing thing.
8. Your child discovers how to shop on
9. Your child becomes aware of where he lives—street address, for starters.
10. Your child pinpoints exactly what annoys his sibling. Pure genius.
11. Your child realizes he has the power to move a finger, an arm, a foot. (May he never master the eye roll.)
12. Your child grasps a tangible concept like front and back.
13. Your child grasps an intangible concept like yesterday, today and tomorrow.
14. Your child figures out how to turn on the TV, DVD or Wii. Too much screen time? Perhaps but whoa, he figured it out.
15. Your child gives you a kiss because he senses you really need one—Emotional I.Q. at its best.

Tuesday, January 14, 2014

First comes love, then comes a child with special needs, then....

"Max, tomorrow is the day when Mommy and Daddy got married!" I announced to Max after dinner last night. Today is our wedding anniversary, 13 years of better and some worse that got better.

Max jutted out his bottom lip. Tears welled up in his eyes.

"Sweetie, what's wrong?" I asked.

Max gestured to me, to Dave, to himself, then made a gesture like he was cradling a baby.

I instantly realized what was up: Max did not like thinking about a time in life when we were around but he wasn't.

"Max," I said, hugging him and trying not to laugh, "we've always been your mommy and daddy, and we love you!"

Max wailed. I tried again:

"Max, you were in my belly, and then you came out, and you were our baby!" I said.

"Max, you were here even before Sabrina was!" Dave added.

Max wailed louder. Tears flowed down his face.

Sabrina tried to make things right: "MAX!" she shouted over his cries. "THERE WERE PEOPLE LIVING BEFORE YOU WERE BORN!"

Didn't help.

Our sitter was there. Dave and I were heading out to have coffee and see American Hustle. I think this little scene says a lot about our marriage, our parenthood and how the two mix.

Dave and I are a team, more than we ever have been. When Max is upset, together we soothe him. We figure out ways to enable him, whether it's programming his speech app or encouraging him to grasp the stair rail and climb down on his own. We own our strengths: I'm more of the researcher and scheduler, Dave makes things happen whether he's driving Max to a program or picking up his meds from the pharmacy.

I'm a worrier, Dave is rooted in the here and now. In Max's early years, when I struggled with sadness over what had happened and I'd imagine the worst, Dave would bring me back to reality. "Look at him, he's beautiful," he'd say. He refused to let me wallow in grief because Max needed me, and I needed to see that Max wasn't a tragedy. Sometimes, I resented that he wasn't suffering like I was. Sometimes, I was grateful.

We no longer have that tension, because the grief has receded. Of course we fight; it's not necessarily a special needs parents thing, it's a parents thing. I sometimes think Dave is too permissive with the kids (you might recall his nickname, Marshmallow Daddy), and that he doesn't listen well enough. He thinks I get too tough on them and him. We argue. We pout. (OK, that's mostly me.) We work it out. We find together time, to regroup and reconnect.

Tuesday nights, we have a standing date to sit at the kitchen table and talk about stuff in our calendars and on our minds—practical stuff, dream stuff. On vacation, we're fine with dropping off Max and Sabrina in the kids' club so we can get some R&R. We try to regularly go out Saturday nights or during weekdays, even more fun because of that illicit school-night feeling. We also spend time apart doing things we each enjoy; Dave will go off skiing, I'll go to book club or see a show with friends.

We have no special secrets to a good marriage; we just go with the flow. There are days when we are better parents than we are partners. Some nights we end up sitting in the living room on separate couches, me typing and him watching TV, too wiped out to talk. But we respect each other's strengths, we deal with each other's weaknesses, we laugh, we love. I'm not sure the challenges we've faced with Max have made us stronger, but they are a history and a bond only we share and there is comfort and connection in that.

Max was still sniveling when we headed out the door. "We love you—you're our boy," I said. I kissed his wet cheek, then Sabrina. We knew Max would be fine. It was our time, an evening to celebrate us and celebrate life.

Happy Anniversary, love.

(Don't tell Max I said that.)

Monday, January 13, 2014

The people who help you see the progress

Max is making progress, slowly but surely, as he always has. We're hearing him speak sentences every so often. Sometimes, Dave and I trick him into them. Like last night, Max kept refusing to take a bath and Dave said, "We're going to make a cow take a bath with you and he'll say neigh!" and Max grinned and said, emphatically, "No! An oww says moo!"

"Dave, did you hear that?" I asked.

"Wow!" he said.

"Max!!! That was an amazing sentence!" I said-squealed. Max giggled, pleased with himself. I'm assuming he ignored the part about a cow taking a bath because he knew Dave was being utterly ridiculous.

Seeing or hearing Max doing something new gives me a bliss rush. This is both because it's a score, but also because I usually know the effort that went into it—so there's that much more to savor. For months, Max has been typing out sentences on his app, and also stringing more words together. His first true spoken sentence cropped up months ago: "Max is getting a talking Lighting McQueen for a present." As is typical with his accomplishments, Max didn't say another sentence again for awhile. That's been OK with me—I know he can. But, wow, what a feeling when he says a sentence.

It's a whole other thrill when people tell me about things Max is doing. It's like getting a surprise gift—especially appreciated during dry spells, when it doesn't seem like there's been much development. It's validating: Yeah, I know it, he kicks butt. This week, I got several treats.

"Today, we worked on improving his core strength and using two hands together," Max's school occupational therapist emailed me. "He sat on a therapy ball in the gym unassisted and had to catch a large playground ball using his two hands. After a few trials Max did great. He was catching the ball unassisted while maintaining his balance on the ball. He then lifted the ball up over his head using two hands and tossed it back."

Holy arm usage! I've never seen Max raise his up high and throw a ball.

Sunday morning, Max went to an activity. Another mom asked what he did on vacation. She knew it had something to do with the movie Cars, but she couldn't understand what he was saying. So Max took a crayon and wrote out "Cars Land."

Holy spontaneous handwriting!

The person who's given me the best perspective of all is my mom. She has been Max's lead cheerleader since day one. In Max's early years, I often despaired about his development, to the point where some days it was hard to get out of bed. Mom isn't one to make up stuff so you feel better, so when she came to visit and pointed out the progress, I took heart. I believed. Yes, Max was retaining more food in his mouth when he ate. Yes, Max was cruising around faster in his walker. Yes, he had so much determination. Yes, he was the world's cutest baby ever.

I don't go to that dark place anymore, but her observations still give me a high. It's like legal marijuana! Um, kinda sorta.

My mother hasn't seen Max in a couple of months, and she was at the house this weekend. "Max is getting even more handsome!" she gushed. "And he is really coming along."

"What are you seeing that's new, Mommy?" I asked.

"He's putting two and two together—he is understanding so much more," she said. "And he's talking a lot."

It felt so good to hear.

Friday, January 10, 2014

Special Needs Blogger Weekend Link-up: Show and tell

It's the Special Needs Blogger Weekend Link-Up of 2014, a fine place to show your stuff and tell why you're sharing!

Note: A few people have had trouble posting using Internet Explorer. Try a different browser!

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 Cold Outside But I'm Warm and Sunny 365 Days A Year

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, January 9, 2014

Good times at The San Diego Zoo

While we were in California on vacation, we hit the San Diego Zoo. There was a whole lot to do: shows, demonstrations, keeper talks. And, oh yes, check out as many of the 3700 animals as we could in a day.

The zoo is very accommodating to people with disabilities. We received an Easy Access Pass that's for guests who have difficulty standing in line or who have limited mobility, and it enabled us to bypass the crowded area where you board the zoo bus tour.

The map of the zoo states, "The San Diego Zoo was designed in an area with natural hills and valleys, which are inherent barriers to disabled access. The Zoo is making an effort to remove barriers to access; however many are technically not feasible to remove." There's also a whole lot of ground to cover (100 acres!) and once again, as in Disneyland, we rented a wheelchair for when Max got weary. The zoo has an on-call shuttle available to transport individuals with disabilities around the park, and we took it a few times.

The 35-minute tour on a double-decker bus is a good first activity, so you can scope everything out. Max was mesmerized; we had to go once more before we left.

Here's some of what we saw throughout our day. None of us could get enough of the pandas. Max has a thing for hippos; Sabrina and me, monkeys; and Dave, elephants. Which animals are your kids' favorites? Which are yours?   


Wednesday, January 8, 2014

On not explaining your child's special needs to strangers

This is a bin at the security checkpoint for LAX in California. Max insisted that his Cars 2 DVD go through on its own. There was a long line of people behind us. It was no biggie, especially if it helped keep the peace; the hustle and bustle of security has been known to make Max lose it. The man behind us gave me a look, but it wasn't him I cared about.

I glanced at the staffer manning the conveyor belt. "He just loves that DVD, and he'd like to get it screened," I explained. "Got it!" she said, and it sailed through.

I have reached a point where I do not feel I always have to explain that Max has special needs in public situations like this. People have their quirks and nuances. The real challenge is deciding whether or not to note that Max has special needs when he disturbs people, as happened when the flight landed. We were circling the tarmac for a few minutes and the kids started squabbling.

"ARRRRR!" roared Max.

I was in a seat across the aisle; Dave was next to them, earphones on, placidly staring into space. This is our usual seating arrangement, as the kids like being next to Sucker Daddy who will gladly buy them overpriced treats from the food cart.

I noticed a woman behind Max peering between the seats to see what was going on and grimacing.

"Kids! Behave!" I said, leaning over.

"He started it!" said Sabrina.

"Noooo!" said Max.

"Max, calm down, we're almost there," I said.

Max let out a string of words only he could understand, but there were a lot of exclamation points in there.

The woman, a well-turned-out matron, glared at me. "Can you please control him?!" she said. "Those sounds are annoying."

I gave her a long, hard look. I could have mentioned that Max has special needs, and that "those sounds" are his way of communicating. In these sorts of situations, I feel as if I'm both parent and special needs ambassador. I want people to better understand Max and kids like him. I want them to know that he is expressing himself in his own way. And that he is not being a brat when sensory issues get the best of him and he loses it, as can happen in noisy places like restaurants.

Thing is, I felt this woman was overreacting. Max had behaved admirably throughout the four and a half hour flight, with nary a peep or a kick. (He used to have this horrible habit of kicking the seat in front of him, but mercifully that's passed.) We were about to disembark. Did she need to know he had special needs? Couldn't he just be any other restless kid, voicing his discontent in his way?

And so I just said, simply, "I'm sorry he's disturbing you."

Dave sat there, obliviously. Sabrina blew me a kiss. Max let out another string of words and an "ARRRRR!" for good measure.

The woman rolled her eyes.

Such is life.

Tuesday, January 7, 2014

How the Disney disability card works: 9 tips for parents of kids with special needs

How the Disney disability card works is something a whole lot of parents have been wondering since the new one came out in October. Our family has visited Disney World a couple of times and, like many, had excellent experiences using the former Guest Assistance Card (GAC). Basically, we walked into rides using an alternate entrance, bypassing lines.

Doing Disney this way is key for Max, who has sensory issues that make standing in a crowd and loud noises scary. Although he is able to handle short waits, he can't deal with long or indoor ones—he gets anxious, loses it and starts screeching. He's also got endurance challenges; he is a good walker, but because of the cerebral palsy he is unable to stand for extended periods of time.

When you've had blissful—not to mention easy—times at Disney using the GAC card, change can be particularly hard. But it had to happen because of pervasive abuse of the system. The Disability Access Service Card is here to stay, and as parents of kids with special needs know all too well how to do, you have to adapt to it. Although it's a more intricate system, it still enabled us to avoid major waits, and we made some discoveries that also smoothed the way.  

1. First, know how the card works.
Disneyland has two parts: Disneyland Park, with themed lands including Frontierland, Fantasyland and Tomorrowland, and Disney California Adventure, which includes Cars Land (aka Max's Holy Land) and Hollywood Land. We were there for four days, with Park Hopper tickets. If you're at Disneyland Park, you pick up the DAS Card at Guest Relations at City Hall (immediately to your left when you walk into the park).

We got our pass at California Adventure's Guest Relations in the Chamber of Commerce (also to the left when you walk in). There were about six or seven staffers there. The one I spoke with was cheerful, respectful and nice. When I said I had a child with special needs, she asked "What kind of accommodations does your child need?"

I explained that Max has challenges waiting on lines, because of sensory issues, and that he tires easily because he has cerebral palsy. She immediately said we could get a DAS Card. She walked around the desk and snapped a photo of Max with an iPad. (If you're not comfortable using your child's photo, an adult can take one in his place.)

Although we rented a wheelchair ($12 a day) for when Max got tired walking around (he'd outgrown the rental stroller), being in a wheelchair does not give you additional leeway. Only wheelchair users who also have behavioral or sensory issues with long queues can get a DAS Card. However, if lines on a ride are too narrow, wheelchair users can still access it through the exit or alternate entrance, as before. For parents whose kids use a stroller as a wheelchair, there's a red tag you can get at Guest Relations.

The DAS Card is good for your entire family. Just one key thing: Your child needs to be present for all of you to go on the ride. The card works for large parties, too, as I learned when I was wandering around with Max and got a tweet from a fellow blogger who said she'd just spotted Sabrina and Dave at Cars Land (it's a small world after all). Julie was traveling with her extended family, a party of 12, and the DAS Card worked for all of them. It's good for the length of your stay, or 14 days if you're a local or annual pass holder after which you need to get a new one.

Based on my observations (as well as insights from cast members I asked), your best bet is getting the Disability Access Service Card at California Adventure if you plan on going there too, because the line tends to be shorter. I saw cast members head outside with iPads to talk with waiting guests and keep things moving. If you're only going to Disneyland, Guest Relations gets busier as the day goes on, so hit it when you arrive.

Once you have the card, you tell the Guest Relations staffer which ride you'd like to go on first and she checks the wait time. She writes the name of the attraction, the current time, the current wait time and an assigned return time on the card. Then she tries to guess your weight! OK, not that.

If a ride's wait time is less than ten minutes, you just show your DAS Card and head through the Fastpass queue or an alternate entrance, depending on the ride. If the wait time is more than ten minutes, you get a return time that is 10 minutes less than the current wait time. So if the current wait time is 40 minutes, you'll get a return time for 30 minutes later. (Because we were there during a super-busy time, we were assigned returns 20 minutes less than the wait time.)

If that's making your head spin, forget about it and know this: You can actually return to a ride at any point after the assigned time, on the same day, so there's flexibility there.

That said, you can't book a new ride till the last one is crossed out by a staffer.

When we got to a ride, a cast member would tell us where to go and draw a line through the ride on the card. We usually ended up in a segregated area with just a few people, and typically waited less than five minutes. When you're ready to book the next ride, you stop at a Guest Relations kiosk. There are four in Disneyland (at Main Street, U.S.A; New Orleans Square; Fantasyland; and Tomorrowland). And there are four in California Adventure (at Buena Vista Street; Cars Land; Paradise Pier; and A Bug's Land). We never had much of a wait.

Guest relations stand at Fantasyland

2. Be super-specific about your child's needs.
With the old card, you also had to explain your child's needs to a cast member at Guest Relations. (Because of privacy laws, Disney can't ask for documentation about disability.) But with the new system, it's more important than ever for the cast member to understand what a child's challenges are. Even if you think that advocating for your child in The Happiest Place on Earth doesn't seem quite right, the truth is the better they understand your child's needs, the more accommodating they can be.

In retrospect, I should have mentioned that we actually do not know whether Max will go on a ride until we are literally about to board. Even if it's not dark or loud, he just might not be into it. We'd thought a Jungle Cruise would be a nice, relaxing start to our trip and so that was our first assigned ride. We got there. "Noooo!" said Max.

If your child ends up not going on the ride you got the time for, you can use the card for instant access to another ride. But I soon realized that the whirlwind of hit-or-miss experiences at rides was going to be stressful. So after we stopped at Cars Land to meet Lightning McQueen, I headed back to the Chamber of Commerce and told a staffer that.

3. Behold: the other pass.
"I know exactly what you need," the cast member said. She ducked into a back room, then came out and handed me three of these:

This is a "re-ad," aka Attraction Readmission Pass, aka manna from Disney heaven. They enabled our family to access any ride through a Fastpass or alternate entrance without a booked time, and added some spontaneity back to our trip. I was told by one manager that families are allowed up to four re-ads a day. They are not standard issue with a DAS Card; they are doled out on a case-by-case basis.

Stuff you might be wondering at this point:

So, is it a pain to repeatedly book ride times?
Fun, it's not, but you get used to it. Your child does not need to be present to get a return time, so you or your partner or your carrier pigeon can go to the Guest Relations kiosk. Max isn't a kid who wants to go on ride after ride; in between we rode the Monorail, the Red Car Trolley at California Adventure and the Disneyland Railroad, and stalked Lightning McQueen.

How did you deal with waiting between rides?
We weren't taking Max on super-popular rides like Racers and Space Mountain, which have way longer waits than ones geared toward young children. The longest we ever had to loll around was a half hour, and we got ice-cream. In general, we didn't spend a lot of time waiting between rides. And if it had become an issue, I would have let Guest Relations know.

Can I use the DAS Card to meet characters? 
If your child can't handle the wait, let the person taking your info for the DAS Card know—you could get re-ad passes just for that. You might not even need one, though. When Max wanted to meet Sofia, but the line was overwhelming to him, I told the cast member what was up and asked him to hold a spot. We took a five-minute walk, and when we got back he immediately let Max hit on her—er, meet her.

Note: At Disney World, the DAS Card can be used at any character meet-and-greet that has a Fastpass, including Princess Fairytale Hall. (Disneyland doesn't have Fastpass character meet-ups.)

4. Repeat rides are OK. (Phew.)

I had a feeling Max would be particularly psyched about Autopia. Ding, ding, ding! He didn't even need his headphones on. The crew let him repeat his ride without standing online. One day, he went on three times in a row.    

Best five bucks I ever spent; Max showed it to the attendant every time.

This was a big score, as Max has issues with transitions. Other parents of kids with disabilities, like Emily at Colorado Moms whose son has autism, also report being able to repeat rides. Sometimes, cast members may ask that your child return to the Fastpass line then get back on, as happened at Tuck and Roll's Drive 'Em Buggies in A Bug's Land. Max did OK—he knew he was getting to ride again.

5. Use Fastpass and the DAS Card
It's a way to fit in more rides. Fastpass, for the uninitiated, is a free Disney service to help beat ride wait times; you go to the attraction, insert your admission ticket into a machine and it spits out a Fastpass coupon printed with a return time window—say, between 11:00 and 11:15 or 3:30 and 4:00 (wait times vary, and are randomly generated). You need one for each member in your party. Mostly, we used the DAS Card and our re-ads, and typically that was enough rides for Max. If we'd needed more re-ads, I wouldn't have hesitated to ask for them.

6. It really does pay to arrive early.
We were at the parks first thing in the morning. We took the Monorail from Downtown Disney; when it dropped us off at Tomorrowland, the area was still magically empty and once we were able to jump right on the Finding Nemo Submarine Voyage. (It was the only time Max had a meltdown—I knew part of the ride would be dark, but I'd thought his love for the movie might prevail. Nope.) Another morning, we showed up at Mickey's Toontown right when it opened. Max was first to see Mickey and explore his house, and there were minimal waits to meet the other characters.


7. Take heart, the shows are very accommodating.
Max still enjoys the Disney Junior channel, and several times a day a theater on Hollywood Boulevard in California Adventure has a Disney Junior—Live on Stage! show with the Mickey Mouse Clubhouse crew, Jake and that Never Land Pirates, Sofia the Great and Doc McStuffins. It lasts about 25 minutes.

The cast members let us wait right in front, and even offered to let Max go in first before anyone, but he refused.

So we left, and returned the next day. Again, Max was fearful. An especially nice cast member, Mike, tried to coax him in. Then he said, "We're going to get him in the back way" and took off. A few minutes later, he returned and escorted us through another doorway at the back of the auditorium. Max peered in cautiously from behind a curtain. Eventually, he went in, settled down and loved the show so much we had to go see it again the next day. Mike was there, gave a big "Hi, Max!" greeting then again let him in the back way. The shows were a highlight of the trip for him. Me, too, because I loved that he overcame his theaterphobia, and I loved seeing his fascination.

8. Sometimes, it's best to split up
I knew from past experience that it would best for our family to divide and conquer, so Sabrina could hit the rides she wanted to go on (basically, everything and anything). Dave and Sabrina went off in the afternoons, Max and I did our own thing, then we'd meet up for dinner. At night, Dave and Sabrina would return to the park. I never felt like we were sacrificing family time; each of us got to spend special time with the kids, and let them enjoy the parks in their own way.

9. If you can't get help, ask someone else.
I can't say enough good things about the cast members, who were exceptionally friendly and pleasant. Many took time to make conversation with Max or note, to his delight, "I love your Lightning McQueen sneakers!" We ran into just a couple of roadblocks. After misplacing our first DAS Card, I stopped by City Hall to get a new one. The staffer could not locate our information, ditto for the manager who came out. I wasn't up for explaining Max's needs all over again, and I left in frustration and later went to California Adventure's Chamber of Commerce. A cast member immediately found our record. She told me that the manager could have looked up information by our zip code—good to know if the same happens to you, given that it's still a new system.

Another time, we wanted to board the monorail at Tomorrowland and there was no way Max would wait on the long line. The cast member basically said sorry, nothing I can do (perhaps he'd forgotten to take his pixie-dust pill). But another cast member we bumped into a couple minutes later allowed us to enter via an alternate entrance when I explained Max's issues with crowds.

All in all, we had a great time. If Disney is game to tweak the DAS system, one welcome addition would be allowing card holders at Disneyland to get boarding times at the rides. Over at Disney World, that's how the DAS system works. Being able to get return times at both rides and kiosks would give parents of kids with special needs and people with disabilities more options—and the more, the magical-er. Or something like that.

Max found a world of entertainment outside the rides. The Pixar Play Parade in California Adventure—with his favorite characters from Toy Story, The Incredibles and Monsters University—was the first parade he ever saw live, and he didn't want it to end.

Then there were the little things that thrilled him, like watching the characters pop out at the It's A Small World clock tower.

When Max emerged from the Finding Nemo ride, weepy, we passed the Mine Mine Mine birds and he cracked up. We had to keep going back to see them, and he made me shoot this video.

Take a cue from the birds: If you're at Disneyland with a kid who has special needs, tell Guest Relations exactly what will make the visit yours, yours, yours. If necessary, do not hesitate to return and ask for more accommodations for your child, or different ones. Disney's new policy says that it provides service to guests with disabilities "that is responsive to their unique circumstances." Every kid and adult with special needs deserves that.

Disneyland provided complimentary media admission, but the opinions expressed here are my own. 

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