Friday, May 30, 2014

The Special Needs Blogger Weekend Link-up: It's go time

The Special Needs Blogger Weekend Link-up has returned. Who's out there today? Bueller? Bueller?

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I Aaahn Oooh Eee A Ire-ahn!

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, May 29, 2014

We're not just our kids' parents—we are their publicists

This isn't another post about Toni Braxton and how she once believed autism is a punishment from God, because we sure don't need to hear any more on it. OK, OK, it is about that, but it's really about something much bigger: all of our children, and how we can help others see them for the great kids that they are.

Braxton's memoir, Unbreak My Heart, just came out. Raised in a deeply religious household, she had an abortion that left her guilt-ridden. She went on to have two sons; her youngest, Diezel, has autism. She wrote, "My initial rage was followed by another strong emotion: guilt. Is God punishing me for that abortion? That's the question that ran through my head the moment I heard the diagnosis." Soon after, she mentions again, "I have sometimes wondered whether God was punishing me or the abortion I had years ago by allowing my son to have autism...."

I had a visceral reaction to the endless news items that centered around these sentences, and the perpetuation of the idea that autism is a bad thing. Something to dread. A curse. Those beliefs aren't just relegated to autism; I've had similar reactions to Max, who has cerebral palsy.

Autism Daddy wrote an excellent post about the media's handling of this and people's reactions, raising many valid points. As he said, "The great autobiographies really get into how the person felt during important moments in her life. Her son's autism diagnosis is one of those moments. And from what I read she attempted to write about it openly and honestly." On Facebook, commenters noted that Braxton deserved acceptance from the autism community, not bashing. People pointed out that she was sharing very real feelings about grief and guilt over a child's special needs.

The anger, sadness and bewilderment she mentions in the book about Diezel's diagnosis at age three are emotions many of us can relate to. I went through them all in Max's early days. I did not know about kids with special needs, and of course I did not know my beautiful Max. But as he grew and I came to see the abilities, I did know. He's 11, same age as Diezel. I look at him and see a great kid, not a kid with disabilities.

This is one reason I started this blog: I want people who, like pre-Max me had never had any experience with disability, to see his awesome-ness. To understand that even if he moves, talks and thinks differently, different is not a divide and that in many ways he is like other kids. To understand that he does not need pity, just respect...and a chance.

So I place no blame, ever, for airing grief. I have no doubt that publicists were pushing the "autism is a punishment" angle. But then, we are our kids' publicists. If you say that you once believed autism is a curse, then you damn better well make it clear how and why you came to realize it is not. Braxton never does.

Braxton cares about the cause; she's an international spokesperson for Autism Speaks, as she mentions in the book. And she does talk about Diezel's progress in the last chapter:

Both my sons are great students—and Diezel has made so much social and academic progress that he's now considered high functioning. In fact, if you didn't know he'd ever been diagnosed with autism, you probably wouldn't figure it out. That's because he has been in such intense therapy for so many years—and when it comes to intervention, early diagnosis makes all the difference. He excels in math, but like many autistic children, he has to work harder at reading. Texting on the phone has helped him tremendously. If he misspells a word, the phone automatically corrects it—and that reminds him how to spell it. The first few years ager he was diagnosed, he was also surrounded by what autism advocates call "typical peers"—meaning that he was in a school where not everyone was autistic. And did I mention that he's now at a regular private school? I'm one of the lucky parents: my son's early diagnosis and extensive therapy changed everything. 

Although she writes positively, she doesn't say much that dispels the awful belief she raised about children with autism being a punishment. The perception that fuels the small-minded and the ignorant, and colors the perception of people who don't know much about special needs. In fact, there's an underlying message that she escaped an unlucky situation of having a lower-functioning child with autism.

There is plenty of coverage in Unbreak My Heart about Braxton's career, bankruptcy, relationship and lupus. My Kindle copy has three and a half pages devoted to her nose job and breast implants. She couldn't have spent more time discussing her experiences with autism—the frustrations along with the revelations, how she grew into special needs parenthood and moved past her original wrongheaded belief? Couldn't she have better shown a mother's love for a child with autism who turned out not to be a punishment?

Even just a few more proud-mama sentiments would have been great. Like the kind she posted on Instagram in April, Autism Awareness Month, noting "Words can't express how proud I am of my son, he's The President of Awesome!!!"

And on Diezel's 10th birthday, she posted on Twitter that "He's growing into such a respectable young man! So proud of him :)"

In the end, for me, it all comes down to Max, Diezel and kids like them. And I believe this: Parents of children with autism, cerebral palsy, Down syndrome and other special needs have an obligation to help people better understand and accept our kids. Especially if you are a celebrity and you are writing a memoir. Perhaps it seems like I'm being unnecessarily harsh here, but I do hold Braxton to a higher standard. There aren't all that many stars who have kids with special needs. When they speak out about them, the media jumps on it and suddenly a whole lot of people are paying attention. You have your platform; use it to really help our kids. Braxton wasted her chance.

I am not saying that as parents, we need to haul around a psychic soapbox to be whipped out at every opportunity. I'm not saying we should all strive to, say, launch awareness campaigns at school for our kids' disabilities or feel badly for not lobbying on Capitol Hill. And yes, sometimes you just want to shout at that mom on the street glaring at your kid, screw awareness, and OH YES we have plenty of gripes about special needs parenthood because a picnic, this isn't, and human, we are.

What I'm saying is, each one of us has the power to raise awareness about kids with special needs and their abilities in small, organic, everyday ways. And we should do whatever feels right and comfortable. We can answer questions, help forge connections with other kids at the park or playground, post pictures on Facebook of our children doing their great things, show the lady at the dry cleaner's how our kid communicates with a speech app. We can make a difference in what we write and share in social media, or elsewhere. Toni Braxton can, too...especially now, while everyone is still watching.

We are our children's voices. We are their spokespeople. We are their publicists. We can help people in their lives better understand what they're about—and in doing so, make our kids' world a more welcoming place.

Wednesday, May 28, 2014

A teen with disabilities makes the football team: Check out this short film

I got to see an amazing14-minute documentary over the weekend. Titled MATT, it's about a high school senior who's on his school's varsity football team. Ordinarily, that's not movie material but Matt was born three months premature, at 1.5 pounds. Doctors told his parents that he might never walk or talk and that if he did survive, he'd be in a vegetative state. Today Matt has disabilities associated with prematurity, but he's clearly thriving—and kicking sports butt.

The film's producer/director, Seth Shapiro of Diesel Films, is a neighbor of Matt and his dad, Rudy Tapia, in Santa Monica, CA. Matt is a major sports fan. But there was something else driving his goal to get on the team: as he told the football coach, "I just want to fit in... I just want to be one of the guys." Last year, he joined the The Vikings.

I've written about the trend of football teams allowing kids and young adults with special needs onto the field for a one-time moment of glory, and my mixed feelings. But Matt is a full-fledged member of the team. He goes to practice regularly, and played in two football games this season. While I'd hoped it would be more frequent than that, as Seth says, "For Matt, it's about being part of a team, which in turn has become his extended family." Matt's happiness and the players' affection and respect for him really shine through in the film.

I asked Seth what epiphanies he had about people with disabilities in the making of MATT. "My epiphanies are that they are fearless, courageous, defiant, brave...and sometimes stubborn," he told me. "But as Rudy said in the film, that's probably what kept Matt alive."

Then I asked what interesting stuff Matt has said about the film. "I'm not sure Matt understands the scope of this film and the difference it will have on people's lives," Seth said. "But he did say to me,  'Now I may be able to hang out with a few more cheerleaders!'"

How absolutely typical is that response?! In fact, one of my favorite parts of the film is when Rudy notes, "He doesn't see himself as having any problems, he sees himself as normal. He refuses to accept that he's not."

Love that.

Here's the movie, enjoy.

Image/Diesel Films

Tuesday, May 27, 2014

In which I take shameless advantage of Max's firefighter obsession

"Maaaa-aaaax, firefighters have to eat ALL of their oatmeal so they will have lots of energy to fight fires!"

"Firefighters take their vitamins so they will be strong!"

"Firefighters love to help people out! So you need to help Mommy and help me put your clothes on so we can get you on the school bus!"

"Firefighters do not wear their pajamas when they go to the store!"

"Firefighters do not screech when the TV is turned off!"

"Firefighters have to wipe their own butts when they live in the fire house!"

"Firefighters don't pull their sisters' hair!"

"Firefighters eat lots of different kinds of food for lunch and not just mac 'n cheese with ketchup."

"Firefighters do not screech when they are in a restaurant!"

"Firefighters do not have ice-cream three times a day!"

"Firefighters did their homework when they were kids!"

"Firefighters definitely take off their hats when they take baths!"

"Firefighters do not kick in the tub and make water go all over the floor!"

"Firefighters do not cry when it's time to get out of the bath! Actually, firefighters take showers! Wouldn't you like to start taking showers?"

"Firefighters always brush their teeth before they go to bed."

"Firefighters go to sleep on time and get lots of rest so they will feel good!"

"Firefighters LOVE to kiss their moms!"

Friday, May 23, 2014

Special needs blogger weekend link-up: Proof that our words matter edition


Before we get to the Special Needs Blogger Weekend Link-up, I wanted to share an email I got yesterday. We all put a lot into our blogs, in the hopes of spreading awareness about our kids (and doing the occasional vent-a-thon, of course). I'm so proud of the impact our special needs blogging community is having.

I came across your blog some time ago while reading an article in, I think. It has been some years. Just wanted to drop you a note to say that yesterday my husband and I were at a restaurant (Outback Steakhouse) and there was a family that came in with a teenage girl.

Nothing really caught my attention about her with the exception that she did have some tightness in her arms but no biggie. I am a nurse and so I am used to pretty much everything not really drawing my attention. They sat across from us, parents of the girl and another couple with them. Across the restaurant another family was with their very young baby who had been crying and fussy the whole time. It is a family restaurant so of course no big deal. The young teenage girl began to get visibly distraught and starting to scream "NO!" at the top of her lungs and "stop crying" about the baby. The parents immediately got up, took her outside and were speaking with her. She was seen putting on her headphones and walking back in to the table. 

This is where it gets interesting. The other table's father, with the baby in his arms, comes up and confronts the parents. He stated that he was about to take the baby outside "THANK YOU VERY MUCH! People like you make it hard to bring babies to any place!!!" Then proceeded to storm off. To their credit the other parents of the teenager said nothing and sat down. They looked defeated. I felt really bad for them and I vowed to buy them a dessert and leave them a note. 

The server of the restaurant is really the hero here. She witnessed the whole scene from afar and was gone for a few minutes then emerged with her manager. She spoke with the table briefly with the teenage daughter for a time and they seemed genuinely  happy with that conversation. Then they went over to the other table and spoke with them for a time. 

Here is the kicker! That table was asked to leave!!!! For confronting other guests in the restaurant and causing a disturbance and making another table feel threatened. (Apparently, the table next to crying baby had kids and felt unsafe; so they took their food home and paid instead of staying and eating! And they told the manager it was the baby's father's fault, not the teenage girl's!) 

The baby's family made a huge fuss of course, but when they left a few tables clapped!!! 

That server was also our server and I asked her what happened and she said her brother is autistic  with CP and has sensory issues and she reads your blog!!! I said I do, too! Wow! She said that she was very incensed that the other table had the gall to confront anyone about a child and obviously, he would not like anyone to confront him. 

The manager bought the teenage family's meal and also bought us a dessert. The grandmother of the baby said that kids like the teenage girl shouldn't be allowed to eat out!! The manager said the same could be said of crying babies. hahah!   

SO thanks to you and Max for making us more aware of issues that children face. 

And now, the link-up. You know what to do:

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I rocked my school concert, watch out, Springsteen

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, May 22, 2014

Kids with intellectual disability can learn to read, finds a study--and moms say, "We know!'

It's not every day that I read about a study in the news and I get all emotional. But one about teaching reading to kids with special needs: yes. Funded by the U.S. Department of Education, it found that students with intellectual disability who participated in a four-year program with intensive, specialized instruction learned to read at a first-grade level or higher. The kids, who had Down syndrome, autism spectrum disorder, Williams syndrome and physical disabilities, started the study around age 7.

I'm well aware that it's possible for kids with ID to learn to read because Max is reading, and making good progress. Still, it's thrilling to see proof-positive research—and it's surely going to inspire many parents out there. The study was done at Southern Methodist University and involved two verbal groups of children; one group of 76 received reading intervention, and the other group of 65 kids got the usual instructional method of teaching reading.

Kids in the intervention group were taught reading 40 to 50 minutes a day in small settings, with a ratio of four students per teacher. They used a program developed by two former special education teachers for struggling readers with average IQs called Early Interventions in Reading (here's a PDF about it). The program helps with letter knowledge and sounds, recognizing syllables and other phonological awareness, sounding out and sight words. Kids repeatedly read in unison, paired up with teachers, and read independently, too. Other activities touched on comprehension and listening.

At the end of four years, the kids who'd gotten the reading intervention outperformed the other group on nearly all literacy and language measures. As the study abstract notes, "Results demonstrate the ability of students with low IQs, including students with mild to moderate ID, to learn basic reading skills when provided appropriate, comprehensive reading instruction for an extended period of time." The findings were published in the special education journal Exceptional Children.

It's no surprise to parents of older children with special needs that they need extra time and attention for learning, although this study can be very inspirational to parents of younger children; when Max was a tot, I needed every speck of hope I could get. It's certainly no shocker that our kids are capable of reading. More than anyone, we know how bright they are.

Hopefully, the teachers, learning specialists and principals in your child's life are also well aware of that, but perhaps they'll pick up ideas from this study. Besides, it's always good for experts to know the proof—especially the doubters. As lead author Jill H. Allor says in this video, "This study raises the expectations for everybody.... It takes away our excuses as educators...We really need to make every effort to teach every single child to read."

Image: Flickr/KOMUnews

Wednesday, May 21, 2014

A lucky kid

Last week, I passed a van as I was driving that had "Invalid Coach" in big letters on the side. I didn't think anyone used that word anymore, but I guess some older associations and companies do. (Disabled Feminists has an interesting discussion about it.) A shadowy figure in a wheelchair sat inside, and I felt awful for that person to be driven around in a vehicle with that label.

It's always a shock to the system to see antiquated ways of describing—and treating—people with disabilities. The world has a long way to go in terms of acceptance, inclusion and viewing people with disabilities as people and sometimes I get frustrated, as I did this weekend when that mom on the street glared at Max. But at times, I'm reminded of how far things have come and how lucky Max is to be living now, instead of decades ago.

It happened again on Monday, when I picked Max up from school and took him to see an ENT. He's been stuffy lately and one of his speech therapists recommended it. Max no longer gets fazed about seeing doctors, and he compliantly sat in the waiting room till he was called in although he did ask the nurse to refer to him as "fireman." When the nurse finally announced "You're next, fireman!" Max flashed her a grin and trotted into the exam room.

The doctor, a soft-spoken man who appeared to be in his late sixties, looked Max over.

"Uh aah?" ["What's that?"] Max asked, pointing to a light.

"It's like a flashlight, to look into your nose," the doctor explained.

Then he asked, ""How old are you, Max?"

"Ire-an!" said Max. ["Fireman!"]

"If you don't mind, could you refer to him as 'fireman?'" I asked, sheepishly. At which point Max jumped up from the chair, walked over to his backpack, pulled out his iPad and navigated to the speech app where he'd typed "I want to be a fireman when I grow up." He pressed a button and the iPad spoke the words.

"He wrote that?" the doctor asked, incredulously.

"Yes, he wrote that," I answered.

"He's bright!" he said, again sounding surprised.

"Oh, yes, he's very bright," I said. "Max, tell him how old you are!"

"Ire-an!" said Max.

"Fireman, please tell him how old you are."

Max typed "11" and the doctor nodded.

Happily, Max's tonsils and adenoids are fine. The doctor extracted a hardened ball of wax from one ear the size of a pea (I'm not exaggerating) and Max was fascinated.

"That's gross!" I said.

"Impressive!" the doctor said.

"Ire-an ax!" said Max, and he cracked up.

"What did he say?" the doctor asked.

"He said fireman wax," I translated, dutifully.

"Ahhh, he has a sense of humor!" the doctor said. No kidding! I realized he was viewing Max through sepia-colored glasses. He'd been raised and trained at a time when people with disabilities were thought to be lesser human beings, and although he's an excellent doctor, he didn't seem to have evolved past that mindset.

It made me glad for the many doctors Max sees who did get the memo about people with disabilities. Max is lucky to live in a time (and an area) where we have a choice of MDs. He's lucky that there are good therapy options. He's lucky to have insurance coverage that by law cannot exclude people with pre-existing conditions like cerebral palsy. He's lucky to have technology that enables him to express what's on his mind, and his firefighter intentions.

I don't sit around thinking about this much, particularly because I don't have much free time to a) sit around or b) think. But when I do, when an incident forces me to realize how lucky Max is, it gives me a lift. It balances out those disheartening times when I feel like I'm climbing mountains to get others to accept Max for who he is.

I'm sure people in my life think it's unlucky that I had a child with disabilities. I don't, though I don't think Max's stroke at birth was a stroke of luck. Earlier in the waiting room, I'd filled out paperwork, and my heart lurched when I got to one question on the medical history form: "Have you ever had a stroke?" I checked off "Yes." I know now that stroke affects about one in 4000 newborns. Max was one of them.

Yet again, there's luck, because Max is doing so much better than the doctors thought he would and he continues to make good progress. This is because of excellent doctors, therapists and teachers along with mine and Dave's efforts, yes, but there's a lot of luck in terms of how Max's brain functions despite the damage. We're also lucky that Max's seizures are under control and that he's physically healthy. And we're so lucky that he has such a cheerful disposition.

"He's a very funny kid," I agreed.

And I'm one lucky mom.

Tuesday, May 20, 2014

Video: This is what good occupational therapy looks like

This is a video Max's occupational therapist took during a recent session. It illuminates one key truth about any kind of therapy for kids with special needs: It has to be fun. Here, she put Max's new firefighter obsession to good use. In doing so, she got Max to verbalize, grasp objects with both hands, raise his arms above his head (not an easy motion for him), raise his legs and engage in imaginative play. In case you're wondering, she was encouraging him to crawl because it works his arm muscles and is good tactile stimulation for his hands. 

I so love that slow-mo motion he makes at the beginning where he pretends the door to the fire house is going up. Also: He does a darn good imitation of a fire engine siren.

Monday, May 19, 2014

A note to the mom who stared at my child

Dear Mom On The Street Who Stared At My Son,

You didn't notice me watching you staring at my son, but oh, I watched. You were headed toward us on the street, walking next to your husband, with a child about five years old trotting behind you. You were impeccably dressed, a shirt with red and white horizontal stripes tucked neatly into tan chinos, dark shoulder-length hair perfectly in place. My Max was ambling down the street and by that I mean, he was moving fast and when he does that he sways side to side.

He'd just had chocolate ice-cream, so he was very happy. He was also psyched to be out on a warm spring night with his mom and sister, cruising around town. He wore a navy cotton bandana bib that was wet; he's been drooling more than usual lately. Cerebral palsy messes with your muscles, including your oral-motor ones.

You fixed your eyes on my son and did not take them off.

It wasn't just a stare, it was a stare-glare. You seemed disturbed by the sight of him, the sight of a child. My child.

The stares I break down like this:

The curious stare: What is up with that boy? I can tell he has special needs, but I'm not sure what. Autism? 
The pity stare: Oh, that poor, poor, boy with special needs. How sad. Awwww. 
The exasperated stare: Why is that boy carrying on in a restaurant? His parents should not take him out if he's going to act like that. What a brat. 

These stares, I understand, as much as I'd like to think that people are looking because Max is so cute (and has really good hair). But the stare-glare, I don't get. How can you be annoyed by how a child looks? Yeah, he's not exactly like other kids who walk straight and who do not drool. But how shallow—no, how vile—it is to go by appearances. Or to think that it is OK to blatantly stare at a child.

We passed each other in about five seconds. I dared you to look at me, so I could give you a look that said, "I see you staring like that, what's wrong with you?"

Max did not notice. He is unaware of stares, and I am fine with that. I do not think ignorance is necessarily bliss, especially when you have a child with intellectual disability, but I will gladly take this oblivion until the day comes when Max can introduce himself to a starer or, as the case may be, give them one right back.

Me, I notice the stare-glares every single time, and a mix of emotions runs through me: Fury. Distress. Heartache for my son. And confusion: What exactly is the problem here?

I typically see the stare-glare coming from elderly adults, who I figure grew up at a time when there was less acceptance of differences, a time when people with disabilities were shuttered away in institutions. But it's particularly unsettling to get the stare-glare from a mother around my age. I would think you would know better. It's a shock to my system to literally see the prejudice that exists toward people with disabilities—and that some people do not care to hide it.

I was tempted to turn around and shout, "His name is MAX!" But that wouldn't have done any good and Max would have just grinned at you and his sister would have been embarrassed, because she's at that stage where I've started mom-mortifying her. So I just kept walking.

If I'm in a park or at a party with Max or some other social setting and I notice a mom or kid staring curiously, I can engage them in conversation. (Though it would be awesome if you just said "Hi!" or encouraged your child to, or let them ask my son a question.) Reaching out to people who seem to want to approach Max but aren't sure how is a way to help them see the kid behind the disability. But there's not much I can do about drive-by stare-glares, and it's frustrating.

You likely won't read this, but perhaps others like you will. Consider:

• My child may have visible differences. He may sound different than your child, and he may learn in different ways. But at heart he is still a kid. Just like yours he likes to laugh, play, love. He's not as different as you might think.
• Think about the messages you will send to your child if you continue to stare-glare at children with disabilities. Maybe acceptance doesn't matter to you, but you will be raising one narrow-minded kid. It will limit his experiences in this world.
• My child may not notice your stares now, but someday, he might. And that will make them even more cruel. Kids with disabilities have a hard time feeling included—how much more so if people look at them as if they are aliens.
• My kid has been through a lot in his young life. When he walks down a street, he is defying the doctors at the NICU who said he might not walk and who weren't sure he would live. He has incredible strength. Adults who shoot him nasty looks are weak.
• No matter what: He is just a child. He deserves to walk down the street with whatever gait he has and not incur a stare-glare. He deserves respect.

Image: Flickr/Julien Brkmr

Friday, May 16, 2014

The Special Needs Blogger Weekend Link-up: Join now, pay never

It's the Special Needs Blogger Weekend Link-up, proof that the best things in life are 1) free and 2) found on the Internets.

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: Please Refer To Me As Fireman Max For The Indefinite Future

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, May 15, 2014

Max's latest obsession: the Official Review

Name of new obsession: Firefighter. As in, Max is going to be one when he grows up.

Level of obsession (on a scale of 1 to 10): 7, but inching upward.

Quality of obsession: High. As a waiter recently said when Max informed him that he will be a fireman when he grows up, "It's a noble calling!" As the guy behind the counter at the dry cleaning store noted, "You need to be brave!"

Cost factor: Low. Unlike Lightning McQueen merchandise (that obsession started about three years ago) or purple stuff (four years and running), you cannot purchase fire stations at Target or on eBay. Or, for that matter, firefighters. Max's new Fire Chief plastic hat: free, from the station.

Time factor: Moderate. Requires weekly/biweekly trips to the local fire house for approximately a half hour. Also: Occasionally need to do a drive by.

Clutter factor: Low. We have a couple of toy fire trucks, but they are not threatening to take over the entire household, unlike the Lightning McQueen crapola.

Yes, we keep a Lightning McQueen car in our breakfront
Groveling factor: Low. The firemen at our local station are incredibly welcoming, and have invited Max to come back anytime. That's totally unlike Max's car wash phase (circa July 2010), when Dave had to beg car wash employees to let our car go through a second time.

Therapy factor: High. Max doesn't yet say the letters ""w" "b" "f" or "t" so repeatedly uttering "I want to be a firefighter!" could really help.

Education factor: High. A whole new book topic to explore! Then there's the fire house knowledge: "What's that?" Max likes to ask as we walk around. He is getting to know the different parts of a fire truck. He is learning how calls come in to the station. He has gotten an insider tour of the firefighters' living quarters (and he has already picked out his bed).

Entertainment factor: High. One of the firefighters slid down the pole three times in a row for Max. At home, Max loves to stand in front of the bathroom mirror in the Fire Chief hat and stare at himself in awe.

Nuisance factor: Medium. Parent required to regularly say "Yes! You are going to be a firefighter when you grow up! And you will live in the fire house! And you will ride in the back of the fire truck!" Parent required to regularly tell that to total strangers as well. Also: Child may not be willing to part with Fire Chief hat at bath time.

Public perception factor: High. A kid wanting to be a fireman is easy to understand. People were definitely perplexed, however, during Max's spaghetti phase (also circa 2010) when I had to write "Max eats spaghetti sauce!" on a foot cast.

Bliss factor: High. When you say "Hi, fireman!" to Max, he squeals and his face lights up.

Cuteness factor: OMG.

Wednesday, May 14, 2014

Win a $100 Lands' End shopping, introducing supermodels Max and Sabrina

Sometimes, I enjoy buying the kids clothes more than I do for myself. This is always true of bathing suit shopping. Like, Max doesn't have any cellulite concerns whatsoever.  

Every spring, I stock up on swimwear from Lands' End. This year, the company sent gear for the kids to model (for keeps), and also offered up a $100 Lands End giveaway for two readers. The swimwear fabric is great quality and doesn't pill; the styles are cute, colorful and comfortable; and there are a ton of tops and suits with UPF 50, recommended by The Skin Cancer Foundation as an effective UV protectant (basically, a great backup for sunscreen). Plus there's always some sort of sale happening.

Miraculously, Max chose colors other than purple. However, he demanded a new Lightning McQueen remote control car as his fee. Sabrina asked if her photos could go on the Lands' End site, and while I couldn't arrange that, she loved her photo shoot. The only hiccup was when her agent demanded that she be provided with a limo fully stocked with cheese crackers and craft supplies, including glow-in-the-dark rubber bands. Also: Both kids would like to be known by their first names only, a la Gisele.

Enter to win a $100 Lands' End giveaway!

Lands' End has generously donated two $100 shopping sprees; winners can pick their choice of clothes, and get free shipping. Enter via the Rafflecopter form below.  

This giveaway will be open until May 29, 2014 at 11:59 EDT. Winners will be announced here. Open to legal residents of the U.S. For the full rules, click "Terms and Conditions" below. 

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Tuesday, May 13, 2014

Max cried at our wedding

We watched the DVD of our wedding over the weekend. I had to keep a box of tissues handy—for Max. He sobbed the entire time.

At first, we thought he was sad that he had missed out (it was a good party).

"Max!" said Sabrina. "You wouldn't have liked it! It was loud!"

Dave decided Max was sad because he didn't want to imagine a time when he didn't exist. Later, when I told my mom that she said, "It's a good thing he didn't exist at your wedding!"

As weepy as Max was, he kept watching. I haven't seen the DVD for several years, and I got sad at times, too—when I saw my dad, who died three years ago. When I saw Karen, a friend who passed away five years ago, leaving behind three kids. When I saw Dave's friend Larry, a father of twins who died in December.

Yet I loved seeing how blissed out we were and listening to the amazing toasts my mom, sister and friends gave. I enjoyed seeing us all dancing. Also: It was 13 years ago, and Dave and I didn't look that much older. (Nobody disagree, k?)

Max kept wailing. He'd stop for a few minutes, then something would happen—Dave and I had our first dance ("The Way You Look Tonight"), we cut the cake—and he'd burst into tears again.

Both kids seemed perplexed by the bit of advice my friend Sharon spoke into the video camera: "Wait to have kids! Have fun!"

Finally, Max decided he'd had enough, and we headed upstairs so I could tuck him in. He was still sniveling.

"So, who would you like to marry when you grow up?" I asked.

He pointed to me.


Monday, May 12, 2014

Joy, redefined

Max and I hit a carnival the other day; the morning was free for kids and adults with disabilities. For two hours, they could go on all the rides they wanted to. Only Max didn't want to go on any of the rides.

I'd had a feeling that's what would happen, and I was fine with it. It used to be that when Max didn't want to do kid stuff like go on rides, hop on a pony at the zoo, see a movie or hang out at a birthday party, I'd feel so badly that he was missing out. I was already despondent over the ways he was lagging behind developmentally. Didn't he deserve his full share of joy?

But Max has taught me a new meaning of childhood happiness. There is no one-size-fits-all variety. Really, it's whatever thrills your kid—going through a car wash, driving by a house with a purple door, eleventy billion pieces of Lightning McQueen merchandise. Or, at times, just walking around and taking everything in.

Max tends to like places he's used to. He enjoys the rides in an area we visit down at the Jersey Shore; new ones, not so much. So we did a few laps around the fair. Max stood for a while in front of a roller coaster, watching it and giggling. Then we bumped into my friend Peggy and her son Mikey, whom Max adores; they do a weekend program together. That made him more comfortable because afterward, Max walked up to a motorcycle ride. There was nobody else on it. "Do you want to go on?" I asked. "No!" he said and walked away. He paused, turned around and went back. He said he wanted to go on. He picked out a motorcycle. We walked over to it. He changed his mind, and we left.

The me of Max's younger days would have been bummed out and anxious. Today's me was happy that Max was curious, and not afraid of being there.

We played that game where you shoot a stream of water into a clown's mouth to make balloons go up, and he won. He said hello to a couple of adults from a group home who were standing nearby. "I'm Juliana, don't you forget it!" one woman told us. "OK!" said Max.

We returned to the motorcycle ride. "Max, you want to go on? Really?" I asked. "Eeely!" he said. The guy at the gate looked dubious. "Eeely!" Max said, nodding.

He headed over to a purple motorcycle. He let me lift him into it. He pointed to the front seat, only parents weren't allowed on. So off he went. He looked nervous the first time he came around. By the next round, he seemed more content. And then, he was gleeful.

He rode it five times. Even if he hadn't gone on it, though, it would have been a Good Day.

Friday, May 9, 2014

The Special Needs Bloggers Weekend Link-up: Jump on in

It's the Special Needs Blogger Weekend Link-up, your weekend read-a-thon. And you should have plenty of time to read this Sunday, because it's Mother's Day and you can do whatever you darn well please, given all those superpowers you possess.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I Got My Mom A Lightning McQueen Mother's Day Present

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, May 8, 2014

15 superpowers of special needs moms

1. Extreme energy to tend to your child's physical and emotional needs, while mostly ignoring your own. 

2. A sixth sense for knowing when something isn't right with your child. 

3. Able to leap over tall piles of clutter in a single bound. Who has time to organize? 

4. Supreme tenacity for getting your kid the treatments he needs—and deserves—whether it's from the Early Intervention team or the IEP peoples. 

5. Bionic patience for handling your child's obsession with telephone poles/Thomas the Tank/Lighting McQueen/flags/plungers/Xbox/purple/vacuum cleaners/sprinklers/box tops/whatever.

6. Boundless endurance for dealing with insurance company reps. (Press "5" if you spend an ungodly portion of your life chasing down claims.)

7. Super-human flexibility for rethinking plans when your outing to the restaurant, play, bounce house or wherever isn't what your child had in mind or, rather, he hates it. 

8. X-ray vision for peering deep into people's psyches and knowing whether or not they are comfortable around your child—then doing your best to help them see the child behind the disability. 

9. Able to morph into various people at any given time: Therapist! Teacher! Nurse! Cook! Coach! Cheerleader! Secretary! Chauffeur! Personal shopper! Ball buster! Boo-boo kisser! 

10. ESP for knowing exactly what your child is communicating, even if he can't say a word. 

11. Amazing fortitude for putting on your pleasant face at the mall, the park or the party when other kids are doing their typical kids thing and you feel so alone.

12. An uncanny ability to soothe your child when he's having a meltdown in Aisle 8....

13...and strength of steel to deal when your child doesn't respond and it feels like the world is glaring at you. 

14. Force-field generation for blocking out well-meaning but clueless relatives ("Oh, nothing's wrong! You worry too much. She'll be fine!")

15. Awe-inspiring resilience to pick yourself up after you cry in the shower or car/freak out on your husband/go ballistic on the insurance rep/have an OMG-how-am-I-gonna-do-it-all panic attack/join your child's meltdown in Aisle 8—and keep right on doing all that you do.  

Image: Shutterstock

Wednesday, May 7, 2014

American Idol fans get mad for the wrong reason, singer makes wrong apology

Last week, American Idol finalist Caleb Johnson dropped the r-word bomb during an interview with AfterBuzz TV. As he now infamously said (minute 1:36 in the video below), "[Twitter] gives access to a bunch of retards to talk to me. I don't really enjoy having to see somebody telling me what song I have to sing...."   

Parents of kids with intellectual disability were offended, like Mark Leach over at Down Syndrome Prenatal Testing; his daughter, Julie, is one of Caleb's fans and has DS. As he wrote, "Since she was born, I have dreaded the day she's at school or is out with her friends, and someone calls her that word."

Many of Caleb's fans were outraged, like these tweeters:

Meanwhile, in the so-called apology Caleb posted on Facebook he clarified that he didn't mean to direct that "juvenile comment" to his fans but, rather, to the "wackos that send hundreds of hate messages to me a day.... Sorry if it offended anybody it was the wrong choice of words."  

More and more people are understanding why using the word "retard" as a synonym for "loser" or "stupid" degrades people with intellectual disability (ID) and also offends those of us who love them. As another dude on Twitter wrote, "Never a huge fan Caleb but having an autistic friend lost a lot of respect for you with the 'retard' comment. Not cool, bro."

Still, there are plenty of people who don't get it—like Caleb, who thought his only mistake was accidentally insulting his fans. Or the fans who were incensed only because they had been insulted. @Taithleach above continued to tweet comments like "Maybe @CalebPJohnson's fan base should be switched to the Retards because that's what he thinks his fans are." His audience took it personally—when, in reality, Caleb's name-calling was more hurtful to people with cognitive impairment. The careless use of the word perpetuates negative stereotypes of people with ID, and makes them seem like lesser human beings. As if they don't already have enough societal challenges to overcome.

The term "mental retardation" is outdated (and is no longer included in federal laws and many state ones) because "retard" and "retarded" have become pejorative. Teens and adult who sling those words around, whether in real life or on social media, demean an entire population of people. And that's far more troubling than one obnoxious American Idol contender slamming his fans. 

More reading:

Image of Caleb Johnson: Screen grab, AfterBuzz video

Tuesday, May 6, 2014

Spring is when the children bloom

The tulips are out in our backyard and all over the neighborhood. The kids are out now, too. I see them when I walk home from the train at the end of the workday, riding their bikes, running around, playing catch. Kindergartners who've morphed into big kids are shooting hoops, and big-kids-turned-pre-teens are riding their skateboards. Everyone looks remarkably older and more mature.

Last night two boys zoomed toward me on their bikes, laughing and pumping their legs as fast as they could. They're a little younger than Max. Two friends, out enjoying themselves and the freedom of being sprung from winter. I stared at them and my heart twinged. They seemed so different than Max.

To be sure, Max is out there on weekends, riding his adaptive tricycle up and down the street like a speed demon. But it's under our watchful eyes: He is not a kid who can go cruising around the neighborhood, alone. He doesn't have a neighborhood friend to do that with, either.

It's been eleven springs now that I've watched these kids blossoming, eleven years since Max was born. Yet the burst of kids outdoors still gives me pause. Seeing the boys at play—and it's always the boys—makes me acutely aware that Max isn't one of them. And that remains a source of pain: Max would have been one of those boys if he hadn't had a stroke at birth.

When Max was little, the compare-a-thons happened all the time—at the park, at the mall, basically anywhere there were kids. Birthday parties were a special form of torture, me sitting and holding a non-talking, non-crawling Max on my lap as friends' kids babbled and toddled by. Me feeding cake to Max because he couldn't yet grasp a spoon as the other children dug in. It wasn't just that I felt Max's differences—I felt so different, too. I was experiencing a very different kind of motherhood from those other moms. I felt so alone in a roomful of happy, chattering parents and babies.

Eventually, I learned to focus on what Max was doing; comparing him to other kids didn't do either of us any good. The passage of time and Max's progress both helped. On days when I felt anxious, I'd email his therapists and ask for pep talks on stuff Max was accomplishing. I'd dress Max in this navy velvet sailor suit we'd gotten as a gift when he was born, prop him up with pillows on our bed or couch and do photo shoots to remind me of his cuteness (not the least bit delayed). I accepted that Max was growing on his own timeline, and nobody else's.

A few weeks ago, some women who don't know our family that well visited. Max said some things to me and I translated: "He'd like you to know he's going to be a fireman" and "He wants you to come upstairs and see his room." One of them remarked, "Wow, you understand him!" I answered, "Yep, I speak Max!" Of course I do: I'm his mom. To me, Max's verbal and other challenges are a normal part of who he is. Navigating them is a normal part of our lives. To me, in many ways, Max is very much like other kids, a boy who's bright, curious, funny, who loves to play and eat his body weight in mac 'n cheese. See our kids' abilities, not just their disabilities, is a message I often share here.

That's why it's so jarring when I wonder what Max would be like if he didn't have cerebral palsy. I'm surprised—no, shocked—that my mind still goes to that place at all. And that it still hurts.

Max is blooming, too. He's getting so much bigger; his arms and legs are hanging out of the PJs that fit him last fall. He's made impressive cognitive and physical progress this past year: He understands more. He's bolder about trying new experiences, like going to movies and restaurants (well, other than the times when he runs out screaming). He's walking downstairs much more steadily. He's better able to grasp stuff. His reading and writing are improving. I can have conversations with him, no matter they are usually about Lightning McQueen and his newfound desire to be a fireman.

Those boys on the bike passed me and for a couple of seconds, I could still hear their laughter. And then, they were gone. I walked to our block, passed our walkway with the pots of orange and hot pink ranunculus, unlocked the door and walked in. Max was sitting at the kitchen table, and his face lit up. "Hi, Ohmmy!" he said. And the hurt dissipated, like petals in the wind.

Monday, May 5, 2014

Go away: My secret to mom sanity

"Mommy, did you have to go?" Sabrina asked. I'd just returned from three days at the Mom 2.0 Summit in Atlanta, a blogger conference.

I could have dodged her question but I didn't: "Honey, I wanted to go to this conference, although I missed you the whole time," I said. "I went because I wanted to learn and see my friends."

She seemed satisfied, and I was glad I'd been straight up. I think it's good for Sabrina to know that at times I do things for me. And I think I'm a better, more sane mom for it. This time around, I was hoping to get a kick in the butt for a Big Idea I've had for several years. It has to do with major help for parents of kids of special needs. I can never find the time to get it off the ground.

The conference, held at the Ritz-Carlton Buckhead, was a whirlwind of sessions and hanging with friends I've met through the blogosphere and making new ones. You never know who you are going to connect with or what kind of inspiration you'll get. One day, I sat at lunch with Lisa Conquergood, cofounder of PicMonkey (if you enjoy taking photos and haven't yet tried the site, go). Soon after we started talking, Lisa gave me a great bit of advice for my idea and got me fired up.

The inspiration kept coming. Cooper Munroe of The Motherhood, one of the saintly people of this world, moderated a panel of women who'd been on Shark Tank (from left in the photo): Susan Petersen of Freshly Picked (creator of super-cute baby moccasins); Romy Taromina of PsiBands (stylish anti-nausea bands) and Shelley Ehler (the ShowNo towel).

They all had great stories. I asked about baby steps for getting an idea going. They agreed it was good to seek out opinions, including ones from people who wouldn't necessarily agree with you. Susan talked about a pillow her grandmother once gave her embroidered with "Start where you are. Use what you have. Do what you can." It's a quote from tennis legend Arthur Ashe about achieving greatness. Romy shared this gem from Wayne Gretzky: "You miss 100 percent of the shots you don't take." Oh, yes, I am a sucker for good quotes.

Button I got from Lizz Porter. I was tempted to take the "I'm not a hugger" one to see people's reactions. But, yeah, I'm a hugger. 
Interesting stuff happened. At one workshop, Margit Detweiler gave Facebook insights (photos are 40 percent more likely to get a "like" than posts, which makes sense since Max is 40 percent cuter than posts are). I heard about the good work of The Foundation for Advancing Alcohol Responsibility (hmmm...maybe time to explain to Sabrina why that relative falls asleep at the table at holiday dinners). A bunch of great bloggers won Iris Awards. Whirlpool gave away two French-door fridges. At a dinner by the Minted people (love their stuff), I learned about scrapbooking from Jessica Turner of The Mom Creative and got a fascinating glimpse into the world of competitive cheerleading hair from Amy Locurto. She also told me about Instagram cheerlebrities like Jamie Andries (do not look unless you want to get depressed about your abs, you have been warned).

Amusing stuff happened. One night, as I stood outside a conference party with friends waiting for a cab to a NickMom party we were late for, a sweet-looking husband dropped off his blogger wife, I begged him for a lift and he said OK. (Thanks again, Kecia, for letting us highjack Justin!) (Do not try this at home!) Then, at a tea lunch, all of us at the table decided we needed more lemon curd and the waitress took pity on us lemon-curd-deprived bloggers and brought out an armload of jars. (I worried that the airport security person might suspect I was a curd smuggler, but, no.) One afternoon, Elsa from Frozen was at the hotel for a little girl's birthday and we highjacked her for a photo. (Elsa, not the little girl.) (When Sabrina sees this she's going to be all "MOMMY! WHAT KIND OF LEARNING WERE YOU DOING?!")

From left: Sandi Chen, Elsa, me and Amy Mascott. Yep, usually I'm a brunette but I went blonde for the conference. Man, Elsa's legs are white. No, I won't sing Let It Go for you. 
I came home on a high (though depressed about my abs). When Dave and the kids picked me up at the airport, I jumped into the back of the minivan and kissed and kissed Max and Sabrina as they sweetly and memorably demanded to know what I had brought them.

Dave survived just fine, thanks in part to my tender notes (remember to take the bag with the birthday gift it's in the hall closet/Sabrina's violin lesson is 11:00 a.m. Saturday and Max has speech at 11:00 on Sunday/try not to let kids wear the same clothes three days in a row). Then Max proceeded to tell me eleventy billion times that he'd like to be a fireman when he grows up, and he will ride in the back of the truck and live in the firehouse.

It was so good to be home, but it was also so good to have gone away. I've met some of you at conferences and I'd love to meet more of you at upcoming ones. Are you huggers, too? If you don't have a blog, maybe one of these years someone will organize a special needs mom retreat or one of us will win the lottery and take everyone to Tahiti. Meanwhile, pleasepleaseplease plan a weekend getaway with friends or go on an art or yoga retreat or whatever floats your boat. Do something for you, away from home. Your children will be fine. You need to rejuvenate your spirit, get revved about something that excites you and, of course, sleep late. You need to remember how to be you.

Meanwhile, you're all invited over to my house for lemon curd, and because I need someone else for Max to talk to about being a fireman.

Shark Tank panel photo: Mom 2.0 twitter

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