Thursday, October 31, 2013

Halloween and kids with special needs: Let 'em celebrate THEIR way

This is an essay I wrote, Just Call Us Halloweenies, that originally appeared in Redbook's October 2010 issue. It's about Halloween, but mostly it's about acceptance and letting go of preconceptions you have about what it means to enjoy childhood. I had no idea that the essay would be controversial, but it inspired some people to chide me for not dressing the kids up and others to berate my parenting. Hope your kids celebrate the holiday in whatever way makes them happiest. Max is going as Lightning McQueen (duh!) and Sabrina will be a lovely skeleton with "blood" running through her veins. If your kids are dressing up, who are they going to be? If not, what fun plans do you have?

My son's first Halloween was scary, for both of us. At 10 months old, Max functioned at a four-month level. A stroke at birth had caused brain damage and serious delays; doctors weren't sure how disabled he would be. Still, I wanted him to have the fun-tastic rite of passage everyone enjoys as a kid—the thrill of dressing up, the glee of dumping out the night's haul. That October, I got Max a ridiculously cute velour pumpkin costume and took him to our town's parade. Hundreds of kids milled around, store owners doled out candy corn, a loudspeaker blasted "Monster Mash."

Max freaked out. His sensory issues were just beginning to surface, and the crowd and noise terrified him. I felt awful for him, and mournful. We left the other families in town at the party and went home.

I tried again next year (Max as a puppy) and the year after (Max as Thomas the Tank Engine). He wailed; I cried. By the time Max's fourth Halloween rolled around and he'd been diagnosed with cerebral palsy, I'd given up on the parade. My husband took our 2-year-old, Sabrina, while Max and I carved out our own celebration. He put on a fireman's hat, I swung him on our backyard swing, and then we downed double-fudge ice cream. It was his idea of a good time and, unexpectedly, mine too; Sabrina could represent our family amid the sugar-fueled swarms.

But, no. Last year, both kids refused to dress up, Sabrina joining Max in a show of sibling solidarity. At first I begged her to wear the Ariel getup ($39!!!) I'd bought. And then, I let go. We would do Halloween our way, in T-shirts and sweatpants. That would be our tradition, as quirky as our family itself.

And so off we went, trick-or-treating. "Who are you?" neighbors asked, perplexed by my costume-less children. "I'm Sabrina!" said Sabrina. "Ax!" said Max. Best costumes ever. 

Wednesday, October 30, 2013

A different voice: Explaining my child with Down syndrome to her sibling

This guest post is from Hallie Levine Sklar, a wonderful writer who's mom to three children and one gregarious lab retriever.

About a month ago, right before bedtime, my four-year-old son Teddy crawled into my lap, wrapped his arms around me and said, “Mommy, why does Jo Jo talk in a different voice?”

“What do you mean, Teddy Bear?” I asked, smoothing back his bangs from his forehead, but of course I knew. Jo Jo is Teddy’s older sister. She’s five, with huge hazel eyes and a sensational mane of ash blonde hair. She also has Down syndrome.

“She talks in a different voice,” Teddy persisted, staring at me. He’s got the exact same eyes as Jo Jo, flecked with specks of brownish gold and green, but while hers have a slight almond tilt—one of the hallmarks of Down syndrome—his are wide set and round.

I hesitated. I wasn’t sure what to say. Jo Jo and Teddy are 17 months apart. For a while, they were like twins, and then, when Teddy turned two I watched as his verbal skills exploded overnight and he began to talk in elaborate sentences while my 3½-year-old daughter struggled still to say single words. Within a matter of weeks, he’d surpassed her developmentally, but he still played with her, still splashed in the bath with her and sang songs with her and insisted they draw together.

Over the last few weeks, though, I’d noticed a change. He’d begun asking why the bus that came to our house each morning to take Johanna to kindergarten was “short” rather than a regular size school bus, why she still needed help dressing herself or writing her name or kicking a soccer ball, all things he had mastered and could now do effortlessly. “Jo Jo sometimes just needs some extra help,” I’d say, and he’d nod and race away to join Geoffrey, his two-year-old brother, in tormenting the dog or some other boys-only activity.

“We all talk in a different voice, Teddy,” I said. “Everyone has their own special unique voice.”

He shook his head. “Geoffrey has the same voice as me,” he said pointedly.

“You and Geoffrey are both boys,” I said, somewhat foolishly.

But Teddy wasn’t buying it. “Jo Jo talks in a different voice than Sarah,” he said, looking at me reproachfully. Sarah is Teddy’s number one girlfriend, the one he insists he’ll marry when he grows up and buys a house (Jo Jo will live with them, of course).

“Well, how do you think she’s different?” I challenged him.

“She doesn’t talk as much as me or Geoffrey,” he said. “And her voice is low and sometimes, and sometimes Mommy when I talk to her she doesn’t always answer. And sometimes she talks and I can’t understand what she’s saying.”

I sighed. He’d gotten it, all right. Jo Jo’s not only less verbal, because she has such low muscle tone in her mouth even when she does speak it’s less intelligible, and she has trouble making the right speech sounds.

“Teddy,” I said, cradling him in my arms, “Jo Jo is just like you and me. But she has a condition called Down syndrome, which means that sometimes it’ll take her a little longer to do things like talk or read or ride a bike. She’ll do them, eventually, but it’s a little harder for her.”

He sat for a moment, obviously digesting this. “It’s harder because she has Down syndrome?”

“Yes,” I said.

“And that’s why she talks in a different voice?”

“Yes,” I said again.

He looked worried. “But will she be able to talk like me and Geoffrey?”

“I don’t know,” I said honestly. “But she’ll always be able to talk, in her own unique Jo Jo way.”

He pulled away from me and stared off into space, frowning, his face furrowed in concentration. I waited for what he would say next, bracing himself for questions about Down syndrome and what it was and why Jo Jo had it and he didn’t.

“Mommy,” he said finally.

“Yes, baby?” I asked, wondering what would come out of his mouth.

“Mommy,” he said again.


“When I go on the bus to kindergarten next year, can I go as a girl?”

Teddy didn’t bring up Jo Jo having Down syndrome again, but after that conversation he seemed even more protective of her. A few days later, at the park, I noticed that Jo Jo was having trouble scaling the steps of the jungle gym. Before I had time to even react, Teddy was at her side. I watched him as he gently reached for her arm and helped her climb up to the top. When she got there, she shrugged his hand off, but he stayed a few feet away from her, watching her as she shuffled, holding onto the rails for support, until she reached the slide. She hesitated again, and within seconds my son was right there behind her, guiding her to sit down and taking her hand as they both flew down the side. When they reached the bottom she got up and went over to the swings while he went back and rejoined his friends, glancing over at her occasionally to make sure she was alright.

That night, as he got into his pajamas, he said to me, conversationally, “Jo Jo needed help today on the playground.”

“I know,” I said, “and I saw you go to her and help her. I’m very proud of you.”

“It’s because she has Down syndrome,” he said, his voice muffled as he pulled his pajama top over his head.

“What do you think about that?” I asked carefully.

“I don’t know,” he said.

That Sunday, Jo Jo and Teddy had Sunday School. Although Johanna was already in kindergarten I’d kept her in the preschool program with Teddy for one more year, partly because it would involve hiring an aide only once a month versus once a week, and partly because I got the sense Teddy liked being in the same classroom as her.

As we walked into the synagogue, he looked somberly up at me. “Will there be someone there to give Jo Jo extra help?”

“Yes,” I reassured him.

I had to come back to the classroom a couple hours later to lead a crafts project. When I walked in, the kids were just trickling back from the playground outdoors. I watched as my son and daughter walked in. The aide was clutching Jo Jo’s left hand and Teddy was protectively hovering on her right, his arm resting gently on her back as he guided her towards the front of the room.

“Everything okay?” I asked the aide in a low voice.

“Great,” she smiled, and then, softly, “you know, he wouldn’t even let her out of his sight.”

I thought about that, as I showed the kids how to build castles and we layered pretzel logs upon huts of graham crackers. While I was grateful my son was so protective, I worried. I’d assumed Jo Jo would repeat kindergarten so they would both be in the same grade together, but now I worried. Would Teddy feel so much pressure to take care of Jo Jo it would overshadow everything else?

After class, I took Jo Jo to the bathroom. Teddy and Geoffrey insisted on accompanying us for moral support. As we were washing our hands, another little girl who looked slightly older than Jo Jo walked in. She blanched at seeing two boys in the girls bathroom, but when she saw my daughter her face relaxed. “It’s Jo Jo!” she said to me in surprise.

“How do you know her?” I asked.

“We were in the same camp group this summer,” she said. “Sometimes I pushed her on the swing.” She studied Jo Jo for a minute, who was standing in front of the mirror, gesticulating and singing.

Then she turned to me. “Why doesn’t Jo Jo talk normally?” she asked

The choice of words stung, and I flinched. But the little girl continued to look at me, patiently waiting for the answer as to why Jo Jo, her erstwhile camp compatriot, didn’t speak the same way she did.

Then Teddy stepped in front of her. “My sister Jo Jo,” he began.

The little girl started at him, surprised, and he blanched. He can be painfully shy sometimes, and I watched as a blush spread across his cheeks up to the tips of his ears.

“My sister Jo Jo,” he said again, then stopped.

“My sister Jo Jo, she talks in a different voice,” he said. The little girl cocked her head and narrowed her eyes, sizing up this little boy in a blue sports coat who stumbled over his words but still spoke so earnestly.

“She talks in a different voice because she has Down syndrome,” he said, his voice rising with confidence, “and that’s okay.”

The two locked eyes for a moment.

“It’s okay,” he said, nodding his head in reassurance.

The girl shrugged. “Sure,” she said and skipped into one of the stalls.

The four of us walked out of the restroom, Jo Jo singing, Geoffrey chattering, and Teddy quiet. I reached out and squeezed his hand. “I am proud of you, my little bear,” I said.

He looked at me curiously. “Why, Mommy?”

I am proud of you for embracing Jo Jo for who she is, I wanted to say. I am proud of you for not shirking away from her differences but accepting them. I am proud of you for showing a level of tolerance and acceptance not seen among people ten times your age.

“You did a nice job of talking about Jo Jo to that girl,” I said instead.

“Oh,” he said, and he squeezed my hand back. Then he looked up at me, his eyes pensive. “Jo Jo’s voice is normal, it’s just different,” he said.

“Yes,” I said. “You’re right.” As we walked out into the sunshine, I realized I didn’t have to worry about undue pressure being placed on Teddy at all. At four years old, he had gamely stepped up to the plate as Jo Jo’s advocate, a pint sized crusader in his little striped button down shirt and brown loafers.

For Teddy, Jo Jo is the same Jo Jo he grew up with, the same sister he’s shared a room with and had pillow fights with for about as long as he can remember. She’s the same girl he’s always known, the girl who loves singing Katy Perry at the top of her lungs and swirling around the bedroom with scarves and knows her entire set of Llama Llama books by heart.

She’s his sister Jo Jo, who talks in a different voice because she has Down syndrome, and that’s okay.

Tuesday, October 29, 2013

Should kids with special needs get special sports treatment?

It's fall, which means glorious leaves, crisp nights, roasted pumpkin seeds and a steady stream of Google alerts about kids with special needs getting special football treatment.

Like this story about Noah VanVoreen, a high school senior in Wisconsin with Down syndrome and the Little Chute High School team's "waterboy." He finally got his chance to take the field; at the end of a recent game, they handed him the ball and let him score an "honorary" touchdown that didn't count toward the score. The crowd went wild. "I feel great!" Noah said. "I scored a touchdown. It was great." His parents were thrilled, too.

And this story about Preston Bryan, a 10-year-old in Tennessee with cerebral palsy who's a member of the Eagleville Junior football team but never plays. He asked to participate in a game. Again, both teams agreed to let him score a touchdown; all the players ran alongside as his father pushed his wheelchair down the field.  

Then there's this story about Simon Roussel, manager of the Mandeville High School football team for the last 10 years who has Down syndrome. After eight years on the sideline, the news reports, the senior got to put a uniform on. Following the opening kickoff, he ran 80 yards for the touchdown. "It's a memory he'll always have," his mom said.

While football season brings a rush of these stories, they're happening with more frequency throughout the year, too. You've probably seen the viral video of Jason McElwain, a high school senior with autism who was manager of his school's basketball team; the coach let him into the last game, and he scored 20 points in three minutes. Or the wrestling match video that went viral in which a seventh grader intentionally lost to a schoolmate with cerebral palsy.

Last year, I wrote about an awesome kid with CP who got to score a touchdown on his school's football team. In the months that have followed, I keep seeing the stories crop up. While kids with special needs may have always gotten special passes here and there, social media seems to have made the phenomenon explode, giving kids, coaches and parents ideas.

As the parent of a child with disability, I read the stories and watch the videos and I'm happy for the kids and parents. But lately, I've had concerns.

What happens after the kid's moment in the spotlight is over? Preston Bryan told his mom he wanted to play every week, "for his fans." Has that happened?

What do these plays teach people about kids and teens with disabilities? The crowds may feel all fuzzy (these stories are often described as "heartwarming"), and the affection and exuberance other athletes show is real. Still, does this further reinforce the idea that kids with special needs are very different than other kids—ones who can't be a usual part of the team? As parents of kids with special needs, we know they kick butt‚ but people who don't otherwise have a person with special needs in their lives may get the wrong impression.

At the heart of it, I'm concerned that people see these stories mostly as instances of goodwill and kindness, ways to make the lives of seemingly unfortunate kids just a little better and give them a moment of glory. It's like the scoreboard might as well be flashing "AWWWWW...." This is the opposite of what I wish for Max and other kids with special needs: For people to see their abilities and the ways they are like other kids. For people not to pity them. For people to include them...regularly so.

Are these sports scores one step forward for our kids' happiness, one step backward for disability awareness?

I'm not talking about spontaneous acts of team spirit and camaraderie, as happened when this boy with cerebral palsy ran at his school's Field Day. I'm talking about planned wins for kids with disabilities.

For perspective, I reached out to some people in the special needs field. "It is a challenge for us not to want to celebrate the positive aspects of these moments," acknowledges Andrea Cahn of Special Olympics. "Yet it's just not quite there yet when we strive for true equality and social inclusion between those with and without intellectual disabilities."

One answer is more programs that encourage inclusion both on and off the field: "There must be opportunities for young people to form friendships and relationships so we can go beyond 'doing the right thing' of helping another feel good for a brief moment in time," notes Cahn. She is Senior Director of Project Unify, a multi-faceted program that involves athletes with and without intellectual disabilities playing together as teammates, along with education and leadership initiatives.

Another idea is to more consistently involve kids with disabilities in other ways on teams—true sportsmanship. In fact, some of the kids in these stories were already part of their team. "In high school athletics, the goal is to win the game," notes Katy Ness, Senior Vice President of Government Initiatives for Easter Seals and a longtime disability advocate. "The goal is also to understand that each member of the team has different strengths and that the power of the group is bigger than the power of one individual. Some individuals may have strengths in physical prowess. Others may master the strategy and provide the emotional glue that keeps a team together during good times and bad."

The ethical matter of whether these kids and teens have their moments in the spotlight and never play again is one school officials and coaches should be pondering, along with the bigger question of how to more organically include students with special needs in activities. Meanwhile, parents have to make decisions that are right for their kids. Me, I'm grateful for sports programs for kids with disabilities, like the Little League Challenger Division team Max has been on that's let him succeed on his terms.

I haven't had to contend with a child's desire to play on a "regular" team since Max is in a school for kids with special needs. But if he wanted to make a play with a football team or any team, I'd say yes, unhesitatingly. I'd help make it happen. Then I'd watch Max gleefully trot down a field as players ran alongside him, our family and a crowd cheering him on—even as I wondered whether Team Special Needs might be losing points, and what might happen once my son's big moment on the field had passed.

Screen grab: Times Free Press

Monday, October 28, 2013

It's my five year blog anniversary, and I have a little wish

Time flies when you're having fun blogging. And meeting all sorts of amazing people. And sharing—and getting—advice, encouragement, affirmation and inspiration. And paying tribute to the many ways your child and other kids with special needs kick butt.

Thanks to all of you for visiting—I am grateful every single day for your company. I have a wish on this anniversary: Tell me whether there's anything in particular you'd like to see on this blog (and if you say more Lightning McQueen, I'm going to run screaming down the street). I never run out of stuff to write about, but one of the main reasons I started this blog was to help other parents and family of kids with special powers so if there's something else I can touch on, I want to know. And, OK, one more small request: If you've never before commented, I'd love for you to say hi.

That is all.


Image: Flickr/ticklymoo

Friday, October 25, 2013

Special Needs Blogger Weekend Link-up: Your share-a-thon

It's the Special Needs Blogger Weekend Link-Up, here for your viewing pleasure.

The idea

Link to a favorite post of the week—yours or someone else's.

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: Is It Halloween Yet?

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, October 24, 2013

My husband's so negative about our child with special needs: Help another mom out

A friend going through a tough time asked me to post her question here; she'd like to get as many perspectives as possible from other parents of kids with special needs so please, read and share your thoughts.

"My husband's negativity is really hard to deal with. He refuses to get hopeful about anything regarding our two-year-old, who has developmental delays. I was recently showing him a new app and getting really excited about using it with her and all I got from him was, "IF she can use it." We got her a tea set for the holidays this year and his comment was, "She'll NEVER be able to understand how to use it." Pretty much everything regarding her needs and future is like this with him. I know he's being defensive and doesn't want to get his hopes up in case she truly is unable to do something, but it's not fair to her to have to prove everything to him. It's also exhausting to be her only cheerleader. I'm seeing a therapist, but he refuses to. How can I involve him—and show him that every teeny step made is huge progress?"

Wednesday, October 23, 2013

Help change other parents' perceptions of special needs: Take this important survey

Ever feel that fellow parents have no idea of what your life is like as the mom of a kid with special needs, for better or worse? Here's your chance to help.

For a major story in Parents' magazine spring 2014 issue, they're conducting a survey of two groups of moms: those whose children have special needs and those who do not.

The editors are looking closely at both groups' attitudes about the issue of special needs, particularly how they affect our children socially and in school. They also want to better understand how both groups of moms understand and relate to one another. The ultimate goal is empathy and understanding, which of course will benefit all kids (and us moms).

The survey should take about 30 minutes and includes open-ended questions, which means you get to express your opinions and describe your experiences in detail.

Just a few requirements from the Parents peeps:
• Moms only, please, ages 18 to 65
• Your child with special needs must be between 3 to 12 years of age. (If you have other children outside that range, that's fine.)
• You cannot take the survey if you work in the fields of education, healthcare or pharmaceuticals (because several survey questions touch on those topics).

The survey is open through Sunday, October 27; click to take the one for parents of kids with special needs. (The survey for the other group of moms is done.)

Sibling therapy for kids with special needs

Sabrina has long had a good influence on Max, often in ways I could have never imagined. As a tot, Max loved to swipe her pacifier right out of her mouth—an excellent way to sharpen his fine-motor skills. In recent years, when she's teased him, he likes to chase her around the house—a great way to get his legs moving.

Sometimes, Sabrina likes to read to him and vice versa. Here's a vintage video of the two of them, guest-starring my mom (Max has since become a much more attentive audience):

Yesterday morning, I discovered a whole new kind of sibling therapy. Sabrina was mad because the previous night I'd taken away a favorite piece of clothing as a punishment. As I was in the bedroom getting dressed, she walked in carrying a photo of me and Dave that she keeps on her dresser. She made a big show of pointedly kissing Dave—only Dave—in the photo. She stood there for several minutes, repeatedly smooching the glass as I applied mascara.

"I love you, Sabrina!" I finally said, taking the Gandhi approach.

She stormed out. I heard her talking with Max. Then he popped in and said something to me. I didn't understand him the first time. But when he repeated himself, I got it:

"I love Daddy only!"

Guess who had been coaching him?

Revenge speech therapy: I'll take it.

Tuesday, October 22, 2013

Get the insurance company to pay your kid's therapy and medical bills! Really!

1. Send in duplicate copies of bills every single time. That way, the insurance company will most likely only lose/misplace one copy. If you happen to get a rep on the phone who points out that you are duplicating bills, just say, "It's like Vegas, baby! I'm upping my odds that my kid's therapy bills will get reimbursed!" Or something like that.

2. When the rep asks for your phone number, so she can call and update you on the progress of your claims, say in your most weary voice, "I'll give you our number but I'm sure you won't call me back." The rep will then rise to the challenge as if to prove you wrong. Or the rep still won't call you back, but at least you'll feel just a teeny bit satisfied that YOU KNEW IT.

3. Tell the rep that you have no choice but to believe that the company is purposefully delaying payments and/or losing bills you have sent in and that you will be forced to call your attorney/Geraldo Rivera/Honey Boo Boo.

4. After you spend 25 minutes on the phone with Ashley (actual name!) at United HealthCare (actual company!) going over details of therapy bills that you have submitted but are unaccounted for, wait several weeks until you never hear back from her. Call and get another rep on the phone named Chris and ask him to look into the situation. When he (miraculously) calls you back, you will find out that Ashley is actually in training and that somehow all the information you shared with her is unfortunately nowhere to be found, possibly because she wrote it down on a gum wrapper that she accidentally tossed (that's not actual, but it is possible). Have a huge hissy fit, and luck out that Chris is actually competent, intelligent and sympathetic and he is going to look into claims for the last six months and make sure all were reimbursed. Note down the case number. Thereafter, whenever you call United HealthCare, Blue Cross/Blue Shield, Aetna, Let's Stress Out Special Needs Parents Inc. or whatever your insurance company, reference the case number and leave a message for Chris to call you, so you can be assured of speaking with the company's lone competent rep. Also: Karma, Ashley. KARMA.

5. Call and ask to speak with a manager about the delayed payments for bills you have submitted. When no manager gets in touch, call back and again request that a manager call you. When no manager gets in touch yet again, go have a glass of wine and pass the job off to your husband.

6. Forget sending in paper bills—so old school. Instead, try a singing telegram, and be sure to let the performer know the correct billing codes to sing. Just warn him to flee the premises if he ends up singing your bills to someone named Ashley.

7. This one's straight from the school of Laying It On Thick. Tell the rep, "Since is the fourth time I am calling to inquire about the lack of reimbursement for the speech therapy bills, I think at this point it might be helpful to hear from the member in question." Put your child on the phone, and when said child utters something unintelligible that only you can understand (like "I'm getting a Cars 2 Talking Lightning McQueen for my birthday!") get back on the phone and say, "I hope you can better understand why he needs the speech therapy and why I need to get reimbursed for those therapies, so I can keep getting him more."

8. There's always this note you could enclose, although if it were foolproof I wouldn't be writing this. And there's always the chance the note will end up in the hands of Ashley, who might accidentally use it to scribble down this week's grocery shopping list.

9. Start a petition for Apple to create an app people can use to scan medical and therapy bills, zap them directly to the insurance company and send them messages approximately every ten minutes reminding them to reimburse you.

10. If you are sending in multiple bills, be sure to attach a form to each bill so the person reviewing the bills won't be traumatized by your attaching two bills to one form. You can also sprinkle colorful glitter into the envelope, thereby totally charming the staffer into doing a quick and competent job of sending your bills through the system.

11. Try reverse psychology. Ask the rep the following: "Do you reimburse for Chuck E. Cheese therapy? Because the rides and games are very beneficial to my child with special needs, not to mention that machine where he has to try and grab stuffed animals with a giant claw!!! How about Toys R Us therapy? Disney World therapy? Disneyland? Or maybe Dollywood? No? Do you reimburse for ice-cream therapy because I swear, chocolate ice-cream is the best motivation for getting my kid to walk/talk/move!!! Or, wait, how about cable TV therapy? I'm telling you, when my kid was watching Dog With A Blog the other day, he articulated a really clear 'dog!' OK, so you don't reimburse for any of those? Hmmm. Well, how about physical therapy?"

Image: Flickr/Alexandre Duret-Lutz

Monday, October 21, 2013

The best sounds I hear all week long

Saturday morning, Max gets speech therapy at the same time Sabrina has a violin lesson. Max is in his room, Sabrina's in the living room, and I hang out in a room upstairs where I can hear both of them.

"Mmmmmm," says the speech therapist. "Mmmmm, Max. Can you say that?

"Mmmmmm," Max says, obligingly.

From downstairs, I hear strains of Sabrina playing Brahms' Waltz No. 5. She's learning by the Suzuki method, same as I did as a kid on piano. It emphasizes listening and repetition. The waltz is one of my favorites; it sounds like this:

"Me!" the speech therapist is saying.

"Me!" Max says, crystal clear. I smile. Those "m's" are hard-won.

They chat a bit more. The therapist plays games and colors with him; she's seen Max since he was about three years old, and she knows how to engage him and elicit sounds I never otherwise hear.

Even as Max continues to make physical and cognitive gains, the speech progress is slow. His brain isn't telling the muscles that control speech the right things to do. His tongue and jaw coordination, spasticity and swallowing mechanism also conspire against him. Of course, he has his trusty iPad and speech app. But Max tries so hard to articulate words, and we'd like to make his speech as intelligible as possible.

I usually know what Max is saying—and if I can't tell, Sabrina can. When we were at an ice-cream store Saturday night and a song came on, Max said something and his face lit up. I had no idea what it was until Sabrina translated: "Katy Perry!"

"Listen to the rhythm," the violin teacher tells Sabrina, and she claps. I hear Sabrina play and stop. Then they play together, Sabrina's more hesitating sound growing stronger next to the violin teacher's mellifluous one. She's been playing violin for about two years now, and her confidence and technique are coming along. When people come to visit she'll whisper "Should I play violin for them?" and when I say "Yes!" she'll dash off, grab the violin and do a little concert. I'm half-expecting her to start charging, one of these days.

"Car!" says Max, and I almost fall off my chair because I can't recall ever hearing him say a "c" so clearly. Today is an excellent session.

"Slower, slower," the violin teacher says. Sabrina's at the end of the piece, and she's rushing it. Her sense of pacing is still developing. Sabrina goes back and plays the final part again, and it sounds really nice.

"Very good, Max!" the speech therapist says. I didn't hear the sound he made but later she tells me it was the first time she ever got Max to say a "p." The letter's particularly hard for him because of the air control required, and she got him to say it after a series of oral-motor exercises. "I don't think you'd be able to get a 'p' out of him," she tells me. I don't mind; I'm just excited he said it at all, another beautiful sound at our house on a Saturday morning.

Friday, October 18, 2013

Special Needs Blogger Weekend Link-Up: At your service

It's the Special Needs Blogger Weekend Link-Up, back in operation, just like our government. Yeah.

The idea

Link to a favorite post of the week—yours or someone else's.

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 Someone Ask My Mom To Stop Kissing Me So Much?

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, October 17, 2013

I love being alone (hear me out, husband)

Dave went to London on a business trip this week. (Hi, honey! Miss you!)

It's been kind of awesome. (HONEY! Wait! Keep reading!)

I love my husband. I also love being alone, and I don't think these are conflicting statements or that a certain person named "Honey" should ever take offense. I just never get to spend quality time with me anymore.

So last night, after the kids were asleep, I had a "me" party.

First up, cereal for dinner. Grape-Nuts, my fave comfort cereal from childhood. (You don't even do Grape-Nuts, honey, so you didn't miss out.) Followed by fro-yo eaten straight from the carton. (I polished it off, so no worries about germs.)

Then a long call to an old friend, the kind I rarely do anymore.

Then I flipped through the Pottery Barn and Exposures catalogs. (Relax, I didn't buy anything from them, honey. But I'll be glad to explain those Zappos charges when you're home.) (I mean, I had no good fall shoes and it wasn't as if you were going to bring me back any from London, right?) (Don't forget the Cadbury Flake bars, please.)

Then I sat at the kitchen table and stared into space for a bit. I didn't even check email. (You would have been amazed, honey). I just hung out there, and it was kind of zen. Except.... (I'd be lying if I said you were on my mind; actually, it was the scale insects, and you can't blame me because they have taken over the bushes on the side of the house.) (No worries, I've got the situation under control.) (Mostly.)

Then I washed my face, ran a scrub over it and applied a face mask. (You didn't need to see that, honey, did you?)

Then I raided the Halloween candy I thought I was so clever for buying ahead of time and decimated the Mounds bar population. (That you definitely did not need to see.) (Note: The Cadbury Flake bars are an entirely different kind of chocolate, so I still must have those.)

Then I ignored the pile of bills and paperwork. (I know you would have been disappointed if I handled them all myself, honey.) (He, he, he.) 

Then I lay on the couch—feet propped up on a pillow, iced tea by my side, lights off, lavender candle lit—and I watched HGTV for two hours straight. (Far more relaxing than The Suze Orman show, FYI.)

Then I headed to bed. (I missed your presence, honey, except maybe the snoring part.) I sprawled out in the silence, did a few stretches and conked out because sleep deprivation and silence and a sugar coma have a way of doing that to you.

When I woke up, I felt so refreshed. (But honey! I really missed you then, and not just because I wished you were driving Sabrina to school like you always do and it's been a mad rush trying to make the train to work after I drop her off but anyways, Max came bounding into the room because he saw a car on the street and he thought it was you coming home from the airport in a rental and he pointed to it and said "Addy!" and I told him it wasn't you, and we were both bummed.)

(But maybe, honey, just maybe, you're a little happy to be alone, too?)

(Love you.)

(Miss you.)

Image: iStock

Wednesday, October 16, 2013

A simple way to do kids with special needs—and your skin!—good

"Every child deserves to know what it feels like to just be a kid—to swim, hike and play with others their age...." That was an awesome (and very relatable) quote I read at an event I attended the other night honoring a camp that hosts kids with skin disease. The event was sponsored by CVS/pharmacy (I'm a blogger ambassador for the CVS Caremark All Kids Can program), and it was all kinds of inspiring.

Located in Livermore, San Francisco, Camp Wonder is a medically-staffed summer program that hosts children ages 7 to 16 from around the country who have serious and sometimes fatal skin diseases. It takes place the last week of June, and is staffed by residents from top local hospitals and volunteers, many of whom used to be campers. Founder Francesca Tenconi herself had a serious skin disease as a girl, and was once in isolation for 11 months; she lost 85 percent of her skin. For her 16th birthday she asked friends and family to forego gifts and instead donate funds to help her create the Children's Skin Disease Foundation. A couple years later, Camp Wonder was born.

Francesca spoke of children with blistering, disfiguring skin bullied and ridiculed at school. She spoke of art classes in which kids drew pictures without faces because they don't want to be seen. And she spoke of the happiness they found at camp, where they find acceptance and a whole lot of fun. Cindy Kee, a senior brand manager for Cetaphil, volunteered for a week and told a story about the camp's prom night.

"A lot of kids don't get asked to prom," she said. Galderma Laboratories, the parent company of Cetaphil, donated dresses. Girls got their makeup and hair done and corsages. "There was a girl in my cabin in a wheelchair, and every year she gets out of the wheelchair and dances on her knees," Cindy said. "Well,  other kids got out of their chairs and danced on their knees, and soon all the kids were dancing on their knees."

Camp Wonder is free for campers, and depends on donations. Cetaphil has been a generous sponsor, donating more than $100,000 to help fund the camp (it also supplies a grant for kids to get products throughout the year to care for their skin). Through October 31, of every special-edition jar of $14.99 Cetaphil Moisturizing Cream sold exclusively at CVS/pharmacy (in stores and online, here), $1 will go to Camp Wonder. Former camper and current camper Jassamine Domino designed the label.

If you already use the moisturizer, this is good reason to stock up. And if you don't, give it a go. As a magazine editor who works on beauty articles, I know that dermatologists are always recommending it because it's gentle and it works. In fact, the stuff is so soothing to skin that children at the camp literally bathe in tubs of it.

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to helping children of all abilities be the best they can be. Like them on Facebook!

Tuesday, October 15, 2013

That I-can't-deal-with-one-more-thing feeling

I stood on the side of my house, gaping at a pair of euonymus bushes. They had tiny white flecks all over the branches and on some leaves. Thousands and thousands of them. This can't be good, I thought. Also: UGH.

I posted a photo in the garden section of my town's bulletin board. Soon, someone diagnosed the problem: scale, a garden pest. I might be able to get rid of the things, but it would take repeated dousings of horticultural oil. "Homeowners can have difficulty controlling these insects, because scales are often overlooked since they remain immobile most of their lives...." I read on an agriculture site, a description that sounded just like one of my relatives. "Heavily infested plants are often covered with small, disc-like or waxy coverings, and underneath each covering is the scale organism feeding on the juices of the plant."


In the scheme of things, itty-bitty pests that eat up your bushes are a minor problem, especially when you have one child with special needs, another with an attitude, a job and a life to keep up with. There are considerably bigger pests I contend with, like the insurance company and its consistent incompetence at processing Max's therapy bills; coating the clueless phone rep with horticultural oil isn't an option. Thing is, having a well-tended house is important to me. I grew up in a Brooklyn, NY, apartment with a pack-rat dad and assorted cockroaches, so a house where things are (relatively) in place and clean and the landscaping looks nice is helpful to my calm.

When Max was a baby and nothing about him seemed in my control, it felt soothing to be in the apple-green nursery I'd decorated, swaying him in the rocking chair with the toile pattern of children at play.  On stressful days, flipping through the Restoration Hardware catalog is my therapy. When I come home wiped from a long day at work, seeing our lush lawn and the newly-potted red mums gives me a bliss boost.

Along with the good nature stuff, though, we've gotten wild kingdom. Over the years, we've dealt with home-invading squirrels (including one I got Dave for our 10th wedding anniversary and one with a thing for Justin Bieber), dead birds and aliens on the lawn of the herbal variety. I'm now on a first-name basis with the local pest control guy. Another pal is the retired neighbor I pay to the cut lawn, which we never have the time to do. I try to keep up with trimming, ripping out old stuff, fertilizing and whatever I can get to.

The white-speckled bushes bummed me out. They were old but in good shape, until the plague descended upon them. It seemed like a Herculean task to spritz oil over all of the specks. As if I had time. Dave lacks the gene that enables you to spot stupid scale insects on your bushes, which goes hand-in-hand with the gene that informs your brain you must get rid of them. So it would be up to me.

But then, the leaves weren't in such bad shape, a sign that the infestation hadn't totally taken hold (just typing the word "infestation" makes my skin crawl). I didn't want to lose the bushes, or pay to get new ones, or do nothing and leave a gaping hole where they once had been or worse, risk feeling super-skeeved whenever I walked by.

Sigh. I would fix them.

I hit a gardening center on Sunday with Sabrina while Max was at a program. After talking with the lawn guy, I got me a big jug of horticultural oil and a spritz bottle. While the kids were inside taking a TV/iPad break, I pulled on gardening gloves and started spritzing with zeal and a few choice words. The oil is supposed to suffocate the little buggers, assuming nobody starts a petition against you for doing them in. I finished the job by flashlight at night, after the kids were asleep.

I'll have to apply another few rounds of oil. I don't have the time. But, as always, you dive in and deal with that one more thing, and the next one that comes along, and the one after that. Because you just know to keep going and going, putting out fires, getting rid of pests and leaping over tall buildings in a single bound. Because if you don't do it, who will?

Monday, October 14, 2013

Special needs parenting and double standards: been there

Max is fond of asking me to say "Max is getting a Cars 2 Talking Lightning McQueen for his birthday present!" multiple times throughout the day. I would suspect this is a government plot to drive me crazy, except that our government isn't open right now.

Familiar phrases make Max happy and content. Me, not so much. I am a mom of the human variety and lately there are times when I do not possess the will to say, one more time, "Max is getting a Cars 2 Talking Lightning McQueen for his birthday." And yet, I force myself. Sometimes I'll say the words superfast or in slow-mo, just for a change, and Max cracks up. I haven't yet found an app that'll repeat stuff ad nauseam, although perhaps I could make big bucks off it! Possible title: Repeat. Repeat. Repeat.

Saturday night, I reached my limit. We'd had a long day. Dave was away, traveling for business, and I was a mom of the exhausted variety. So when Max said "Cars 2!"—his usual prompt—and looked at me expectantly, I blurted, "Max, sweetie, I am a little tired of talking about Cars 2 Lighting McQueen, which you are getting for your birthday, could we not talk about it for awhile?" Max just stared at me—not angrily or sadly, but curiously—and actually didn't ask again the rest of the night.

Just. Like. That.

There are times when it becomes startling clear that I have different expectations for the kids. Sabrina has gotten into the habit of asking for a Butter brand sweatshirt. Those things cost a hundred and up, and I have basically explained to her that she will get one over my dead body, which gave her pause, but just a little. She keeps asking and asking and I will say to her, "Sabrina, please stop asking! It makes me think that you are not listening, so let me just say again that I am not going to spend a hundred dollars on a sweatshirt."

I don't hesitate to ask her to quit talking about the sweatshirt. But Max, I've indulged, and it's got nothing to do with the fact that the toy he wants is reasonably priced. Repeating stuff, I've figured (and the neurologist has told us), is how his brain works. A few years ago, he loved to say over and over, "Max eats spaghetti with sauce!" and there was no stopping him until he grew out of it.

Part of children's natural development is learning that the world does not revolve around you (although I know adults who didn't get that memo). Growing out of the ego-centric phase can be harder for both kids with special needs and their parents. Max has often been the center of our attention because he's needed so much help, everything from holding a cup when he drinks to pressing buttons on toys. Although he still needs assistance with activities involving motor skills he's maturing in other ways, especially with social stuff and reading emotions. The other day, after he'd been screeching about something and he saw me get upset, he said "Sorry." And he meant it.

I am so used to working around Max's quirks and challenges that it had never occurred to me to ask Max to ease up on the Lightning McQueen talk, or that he would oblige.

Max did bring up Cars 2 Talking Lightning McQueen the next day, but far less than he has in the past. He clearly understood I was less than enthusiastic about constantly discussing it. That said, he spent part of the morning at a program where he charmed someone else to talk about it and even write it out for him. In Play-doh, no less.

A work in progress: Max, parenting, life.

Friday, October 11, 2013

Special Needs Blogger Weekend Link-Up: Join the crowd

It's another Special Needs Blogger Weekend Link-Up. Crowdsourced reading material, at its best.

The idea

Link to a favorite post of the week—yours or someone else's.

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: I'd Like To Sign Up For Driving Lessons, Please

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, October 10, 2013

Help for moms whose fantasy life needs a makeover

Last night, I started reading Under The Tuscan Sun by Frances Mayes. I've had it lying around for years, and finally picked it up. It's a memoir of the travel writer's renovation of a villa she purchased in the Tuscan countryside.

I've held off reading the book because I knew it would give me a severe case of wanderlust. Sure enough, after a couple of chapters I put it down and stared into space, dreaming about renting out a villa in Tuscany next summer.

My travel fantasies boil down to three types: Actually possible, fantastical yet possible and purely fantastical. Taking the kids to La Jolla, one of my favorite cities: actually possible. Taking the kids to The Great Barrier Reef: purely fantastical. A Tuscan villa falls squarely in the middle. We could find a gorgeous one at a reasonable price (hey, this is a fantasy), take off two weeks, explore nearby towns and vineyards, cook with local ingredients, eat lots and lots of fresh pasta, take afternoon naps in hammocks, find a Prada outlet store (I know, that would particularly thrill the kids).

And then, bringing my fantasy to a grinding halt: What if Max had a seizure? What if we needed to rush him to a hospital? How many good hospitals are there in the region? Would they even know what to do?

I'd studied in Florence when I was a junior in college, and learned Italian while I was there, but I wouldn't be able to count on my rusty Italian to get by in an emergency. This is when I picked up the phone and called the neuro's office, because I suddenly realized I didn't have an updated letter on how a hospital should treat Max if he ever had a seizure; I always carry a letter like that around, just in case.

The last time Max had a major seizure, a grand mal, he was just one and a half and the ambulance workers couldn't stop it. It took the doctors in the ER what seemed like forever to get him under control. It lasted about 40 minutes, and Dave and I were terrified Max had gotten more brain damage. But, no. He was OK. Max had just learned how to high-five and I still remember him lying groggily in the hospital bed, his little pudgy hand lifting to give us a high-five, maybe the best high-five ever in the history of high-fives.

I remain traumatized, most of all, by the sight of Max lying on the couch in our living room, seizing uncontrollably. I thought he was dying. He's never had a seizure like that since,  but I will never be able to get that out of my head. It's definitely post traumatic stress disorder I haven't dealt with.

Back to my non-fantasy: I figured I could always get an emergency-instructions letter translated into Italian before we went on a trip, and of course I could look up info on Tuscany hospitals and then surely, through social media, someone would know someone who had family in Italy and I could get more medical scoop that way.

Yep, this is how my daydreams go these days. I've come a long way from the carefree travels of my pre-parent life when I hiked in Patagonia, Chile; road-tripped around Ireland, Costa Rica and Spain; and sailed Alaska's Glacier Bay. Once, I flew as a courier to Milan to a friend who was studying there. Air courier companies basically pay your plane ticket (or they used to, it's been awhile) so they can use your luggage allocation to transport packages. My dad was convinced I was acting as a drug mule, and that he'd never see me again. Everything went fine except at the end, when a guy at the airport handed me my plane ticket to go home. After he left, I realized he'd given me a ticket receipt instead of the actual ticket. I stood there freaking out until I happened to spot him going down an escalator, and he got me the real ticket.

Settling into a villa in Tuscany seems like a relatively tame thing to do. I just need to get past my concerns about foreign travel with Max and the PTSD although the lure of pasta, vino and afternoon naps might do it.

Image: Flickr/Mercea2011

Wednesday, October 9, 2013

More horrifying proof that authorities can't handle special needs

Months after Robert Ethan Saylor died at the hands of police over a movie theater incident, another story involving shocking violence against a person with special needs is making headlines. This time, it involves an 11-year-old with Down syndrome.

According to news reports, the child has a habit of throwing himself on the floor and refusing to get up. That's what happened September 12 at the New Leaf School in Neptune Beach, Florida. How the principal handled it: "The principal pulled him across the floor, just under 30 feet, some of it unfortunately over concrete and over two door thresholds," reported Lt. Adam Militello of the Neptune Beach Police Department.

Cesar Suarez recalled his reaction when he picked up his grandson from school: "You could imagine, when I saw his hand like that and his rib cage I said, 'Jesus Christ this is criminal. What did you do to my baby?'" The boy (adopted by his grandparents when his parents couldn't care for him) had bruises on his arms and rib cage.

The principal has reportedly apologized several times, sending cards and emails. There's an ongoing investigation; the State Attorney's office will decide whether or not to file charges. The child has been moved to another school.

New Leaf is geared toward kids with learning disabilities. You'd think educators like the principal would have know how to handle all kinds of discipline issues, including those involving kids with special needs. But, no. You'd think the police officers who encountered an agitated Robert Ethan Saylor on that fateful day would have had training in handling individuals with special needs. But, no.

These stories are horrifying and, in Saylor's case, tragic. They're eye-opening, too. We've come a long way from the days when kids and adults with disabilities were shuttled off to institutions, but there is clearly still so much misunderstanding and ignorance about people with special needs.

This week, I also read a story about an Australian mother with cerebral palsy assaulted by a group of kids. Rachel O'Neill has hearing and speech issues and walks unsteadily. When she went in to her local police station to file a complaint, she was told to return when she was sober. Really. "I came back every day for nine days and eventually had to get a letter from my GP to tell them they had to take my statement," she said. O'Neill filed a complaint with the Equal Opportunity Commission and won a settlement. But the even bigger win is that O'Neill is in the process of taking a course (one she helped to develop) that will qualify her to train police in handling people with disabilities.

It sure seems like police stations and schools in this country could use similar training programs—and that higher-ups should be making them mandatory.

Image: NBCLatino video/screen-grab

Tuesday, October 8, 2013

And now I know what Max worries about

Sabrina isn't sure she's got all of her spelling words down pat, so she wants to practice again. Another girl at school is snubbing her and she's not sure why, what do I think it could be and will this girl always be that way? Will her earring holes close up if she doesn't sleep in earrings? Oh, and she doesn't want to go to sleepaway camp next summer and we're not going to make her, right? Right?

Sabrina regularly shares concerns and worries with me. Max rarely does, other than when he is scared we're going someplace where there will be loud noises, such as fireworks or an event. "Loud!" he'll say, swiping an ear. His lack of worrying could partly be because of his cheerful, easygoing disposition, though I also wonder if he's not yet cognitively at a level where he has many concerns.

Or maybe it's a communication thing. Those skills are growing in other ways; he's started writing sentences—sentences!—on his Prololquo2Go speech app. He's using pronouns; before, he used to say "Max is getting Cars 2 Talking Lightning McQueen" and lately he's saying "I'm getting a Cars 2 Talking Lightning McQueen" (about 20 times a day). But he doesn't use the app to communicate feelings.

The way his brain works is, in many ways, still a mystery. The other night, though, I got a major peek in. It started with applesauce. Sabrina and I went apple-picking with friends while Max and Dave were at a program, and when we came home we decided to make applesauce. (This is my go-to recipe, easy and tasty). So we cored the apples, cut them up, threw them into the saucepan with sugar, water and cinnamon and put them over a medium flame on the stove.

Then Max needed a bath, and Dave and I walked him upstairs. "I'm cooking with Sabrina, can you do this?" I asked Dave, only he booked downstairs while I was helping Max take off his clothes. So then I ran the bath, washed Max, shampooed his hair and let him kick in the water, as he loves to do. I took a few minutes to check email. 

Suddenly, our smoke alarm went off just when I smelled something burning. "DAVE! TURN OFF THE STOVE!" I shouted from upstairs. He did, and opened the back door to let in air. After Max was dried and in jammies, I had a little standoff with Dave in the living room. OK, a big one. Only some of the applesauce was OK and the bottom of the pot was totally scorched. 

"You were on your computer!" Dave said.

"Yeah, but if you had just given Max a bath and let me pay attention to the applesauce and finish cooking it with Sabrina, this wouldn't have happened!" I yelled. It wasn't just the applesauce. Are you ever really fighting over applesauce or taking out the garbage or picking up socks over the floor? No, it's always some underlying issue, and this time it was about consideration. I'd had a special afternoon out with Sabrina, and she'd been so excited to cook up the apples together. I felt awful for her.  

The kids had wandered in and were listening, wide-eyed. I know what it's like to watch your parents fight because I did it plenty of times as a kid. I knew I needed to stop, or at least walk away until I was calm, but I just couldn't let it go. 

"We picked all these apples, and now the kids aren't going to have much applesauce!" I said, angrily. 

"I can go to the supermarket and buy more apples!" Dave said. 

"That's not the point!" I answered. (Lucky for him he didn't mention buying applesauce, or I might have cored him.)

"Honey, you're right, I should have given Max a bath and let you finish the applesauce," Dave said.

Acknowledgment can be every bit as satisfying as an apology. As I took a second to savor it, Max's bottom lip jutted out and tears started falling. "No ight!" he said. ("No fight!") I felt badly, but not nearly as much as when I grabbed him onto the couch to hug him. He put a hand on my chest, then he put a hand on Dave's chest. And then he got up and walked over to one of our wedding photos on the bookshelf and pointed to it.

Without a word, he was letting us know that he was worried whether or not we still loved each other. Worried just like I had worried back as a kid that my mom and dad weren't going to stay together. (They didn't.) 

Instantly, it broke the tension. "Sometimes Mommy and Daddy fight but we still love each other," I said, and we kissed. Then we did a family group hug and we tucked the kids into bed. I scooped the salvageable applesauce into a dish. Then I googled "scorched pot" and found a vinegar-baking soda trick that mostly did the job. Dave and I took turns scrubbing. And I only grumbled a little more. 

Oh, yes. Max has worries, just like any kid. This is reassuring, and yet another reminder to not underestimate this boy of mine. He knows. He knows.

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