Friday, August 31, 2012

Special Needs Blogger Weekend Link-Up: Go on, share!


Behold: Another weekend link-up for bloggers with kids who have special needs. The idea: Share a favorite post of the week.

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I'm Still Obsessed With Ur-Ul And It's Been Three Years.

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 fabulous posts.

Happy linking!

Image/istock

Wednesday, August 29, 2012

7 tips for photographing a child with special needs


Months ago, I read an article in O Magazine about Southern California photographer Marsha McNeely. She's a mom of three young kids, and "has been blessed" (as she says) with one on the autism spectrum. Marsha is the owner and principal photographer of Marsha McNeely Photography; its SpecialT subdivision focuses on sharing best practices for photographing kids who have special needs with other photographers. I asked if she'd share some of her tips here, and she kindly did.

Taking photos of your own kids is tricky enough—look here, stop poking him, please don't cry. You know the scene. Now add a child with a special need to the mix and you've got yourself a real challenge. But as a parent, you see how fast they grow and change and you want to be able to freeze time for just a little bit. And you can.

To have the tangible evidence of these moments in your hands for a lifetime and to share with your kids is just priceless:

"Remember when you were missing those teeth?"
"Remember when that cowlick in your hair was totally crazy?"
"Remember that stuffed frog, you wouldn't let go of it at all that year?"

As the parent of a child with special needs, I want to give you a few of my best practices to help you get those precious and memorable images of your child.

Find your child's happy hour. As with any kid, your special needs child probably has a time of day when they are more comfortable, compliant, and happy. I have seen this to be especially true with children who have special medical issues. Capitalize on that time.

Choose an activity that engages your child. Before my son would engage with us, due to autism, he would engage with his trains. Some of my favorite images of him are of him playing with his trains. They were soothing to him. They were safe and through them, I could see him, in a manner of speaking. I look back on those now and they are more a memory of "Oh remember when you used to LOVE those trains. Look at those sparkly eyes on you!" They aren't anything posed or formal. They are who he was at that moment in time.


And just so you know, the above images were taken with my personal point and shoot camera. Nothing fancy or specialized.

Get your camera out frequently, not just for special occasions. Plain and simple, the more it is around, the less scary it becomes.

Prep for a more traditional portrait. Create a story about having your picture taken and use your child as the main character. Tell him/her all about the things that you do when you have your photo taken—sit tall (or "belly out" as I tell my little clients), show me your nice teeth, etc. Using verbal and/or visual cues goes a long way in preparing them. You can also practice these things before the camera comes out.

Choose a location that is interesting to your child. As you can see, there is a train theme with my kids. They were so happy to be able to walk around and get really close to 'real, live trains' that they seemed to forget that I was there to get some photos of them for our wall! Once I got them placed for this shot (which was a like herding cats since there are three of them), I told them that their cat is probably at home wearing their underwear right now! Outbreaks of insane laughter...snap snap snap. Got it.


Don't forget to reward. Find something that is motivating: a little treat, a toy from the $1 treasure chest. Use whatever their currency is! Be sure to talk about this before you start taking photos so they know what they are working to earn. Use a first/then tactic. "First look at mommy and show me those shiny teeth and THEN you can have ____." I like to use something like a Smartie candy. It's small and dissolves fast. It works pretty well if you are trying to photograph your child for a prolonged period of time. One word of caution, if you are using food throughout a session, choose something that is not chewy like a gummy bear. You will end up waiting for your child to stop chewing for most of his "happy hour."

Get in the picture every once in a while! I am so guilty of always being behind the camera that there are periods of time where it looks like my kids only have a father, sad but true! Hand your camera to a spouse, friend, other relative and on occasion, a professional. You are a very important part of the "picture" too.

This gem was taken by my dear friend Mary of InFaith Design and Photography.

Want to find a photographer in your area who has the heart and talent to work with your special needs child? Visit the Find A Photographer directory.

Tuesday, August 28, 2012

Top 10 things overhead by the cows during our farm stay


"Mommy, are the cows all one family?"

"Oooh! Cows really moo!"

"Oooh! Eggs! The chicken actually laid eggs! Can they make scrambled eggs?"


"Hi, baby cow, what's your name?"


"It's pooping!"

"It's peeing!"

"Eh inks!" "("It stinks!")


"Look! Milk is coming out!"

"I need Starbucks."

"Mommy, could we take a chicken home?"

Monday, August 27, 2012

16 positives of having autism (from someone who knows)


This guest post is from Kerry Magro, an award-winning autism advocate diagnosed at age 4. Now 24, he is a graduate student in Strategic Communications and Leadership at Seton Hall University. Kerry is also the co-host of Autism Radio: Hope Saves The Day, a columnist for Autism After 16, a life coach, a motivational speaker, a youth delegate for The United Nations and the writer behind the blog My Autism My Voice. He has been published in the San Francisco Chronicle, and served as an advisor on the movie Joyful Noise starring Queen Latifah and Dolly Parton. Last summer, he received the 2011 Outstanding Individual with Autism Award from the Autism Society of America. I asked him if he could share thoughts to inspire parents of kids with special needs. What he had to say:


My name is Kerry and I was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), a form of autism, when I was 4. As a kid, I had sensory integration problems, motor deficiencies, speech delays, and social awkwardness. I could not even begin to tell you the stories of how aggressive I was. Lashing out was my communication and it led to emotional issues for years for me.

Over time though things did progress. The anger of not knowing the world and how to express myself became a place of understanding. For a long time I thought the reason why I was able to get to where I was today was because of my therapies (I had physical therapy, occupational therapy and speech therapy from 6 to 18). Another factor I thought contributed to this was because of my parents love for me. Above all though what really set me a part and made me begin to not only see life differently but also understand the world so much more was a positive attitude. Once I stopped beating myself up for not being the best talker, the best writer, or even the best looking guy, I began to focus on who Kerry was today and what he did well.

I can’t tell you exactly when I started to think in this mentality but when it hit me I was on a different path than I once was. Over thinking about what I didn’t have turned into self-reflecting on what I did have. I began looking at positives such as my great memory for sports. I began looking at my love for movies and turning that into an acting career (which would then begin my role as a national motivational speaker today). Having this attitude led to me graduating grade school, high school, college and now fulfilling my dreams of getting a masters degree in Strategic Communication and Leadership to become an advocate for the future generation of Kerry Magros out there.

For those readers out there, especially those parents who are reading this, what I hope you take out of this is that the power of a positive attitude can do wonders for not only your life but also the lives of your kids.

I hope everyone remembers that….

• Autistic people are gifted
• Autistic people can surprise you
• Autistic people can focus on certain interests for long periods of time
• Autistic people are passionate
• Autistic people are non-judgmental
• Autistic people are honest
• Autistic people are rarely boring
• Autistic people are special
• Autistic people are logical
• Autistic people are loyal
• Autistic people are interesting
• Autistic people are wonderful
• Autistic people are diverse
• Autistic people are imaginative
• Autistic people are unique, and as Temple Grandin says, “Different but not less”
• Autistic people, no matter where they are on the spectrum and regardless of how many traits listed above they may or may not have, are just "people." People with weaknesses but also strengths, destined for their own greatness in the way they see fit. I hope we can all cherish these facts because if we can, our autism community would be even more phenomenal than it already is.

Saturday, August 25, 2012

Random Good, Happy Stuff


• This beautiful boy is Jon Paul, son of a reader here named Faye. He is on page 24 and the back page of the just-released Toys 'R Us Guide For Differently-Abled Kids. Faye writes, "Eighteen months ago, this little boy was sitting in an orphanage in China for severely disabled children. He was deemed 'unadoptable.' Today he's on the pages of a Toys 'R Us catalog. I am beyond proud." 

• People, I need your help. I am working with Parents.com to put together a holiday toy guide based completely on parents' recommendations. I have just a few weeks to do it, I need more recommendations, and I KNOW you have them. Please, can you go here and fill out the form? Don't do it for me (though I appreciate it)—do it so other kids' can benefit from the toys that have helped your child. 

• Absolutely awesome video of a little girl who got a new pair of legs (thanks, Paula)!

 
• As you read this, we have hopefully arrived safely in Vermont for a vacay. First we are doing a stay at Liberty Hill Farm. The kids are psyched to milk cows and generally see how a farm works, but I think I'm even more excited than they are. Then we head over to Smugglers' Notch, which has amazing summer (and winter!) programs for kids with special needs. Our general plans are to have lots of fun and eat lots of cheese (well, OK, that's mainly my plan). 

And, yes! I have some great guest posts planned for next week. Not from him:



Image/JelleS

Friday, August 24, 2012

Weekend Link-Up for adult bloggers with disabilities: Share a post!


Yipppeee! Another weekend link-up, only this time I'm doing something different: This one's for adult bloggers with disabilities. I think we parents of kids with special needs have a lot to learn from them.

The idea

Share a recent favorite post of the week.

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: My Mom Smells Great.

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 fabulous posts.

Happy linking!

Image/istock

Thursday, August 23, 2012

The most exciting birthday party in the history of the world


Max has been talking about his birthday party for a good month now. When I come home from work, it's the first thing we discuss; on the weekend, we go over plans every couple of hours. He's let me know exactly what he wants, and likes me to repeat exactly how the party will play out:

• We will have the party at the same kids' art studio it was held in last year
• It will be a Cars 2 party
• There will be a Cars 2 ice-cream cake with both chocolate and vanilla ice-cream
• There will be purple cups
• He will drink lots and lots of chocolate milk
• Mommy will have iced coffee, Daddy will have hot coffee, Sabrina will have lemonade
• Nobody will sing "Happy Birthday" (evidently, he remains traumatized by that).

And every time I'm done, Max flashes me this huge smile and says "Eee-yah!"

Thing is, Max's birthday isn't until December. He's aware of that, but no matter: He has plans to make. And so, I've been leading the conversational equivalent of that movie Groundhog Day.

This weekend, we were at the drugstore and he begged me to buy him a Cars birthday bag. It cost approximately $199 because it came pre-filled with red tissue paper and a bottle of Dom Perignon had curlicue ribbon dangling off it. Well, OK, there was no champagne but for the price there should have been. The second we got home, Max tossed the tissue paper and ribbon, and when he wasn't looking I salvaged them from the garbage and please don't think less of me if you get a gift from me wrapped in very wrinkled tissue paper and curlicue ribbons anytime in the near future. As the saying goes, reduce, reuse and resist the temptation to give in to your child's Cars/birthday whims.

The bag's been sitting on our kitchen table ever since, next to the purple plate and cup that have been there since the beginning of time, or at least since the start of his purple obsession (now three years, and going strong). Lightning McQueen and plastic tableware are probably not Martha Stewart's idea of a lovely place setting, but at this point I've stopped noticing them.

Granted, a birthday party fixation is easier to handle than trotting after your child as he repeatedly wheels a luggage cart around an underground garage. It is way cheaper than a car wash obsession. It is far less fattening than regularly serving up spaghetti. And, really, I should be grateful he's not asking for anything really out there, like a naked woman jumping out of a cake or something.

Still, I'm getting a wee bit weary of birthday party discussions. There is no party planner you can hire who will repeat "You will have a Cars 2 ice-cream cake with both chocolate and vanilla ice-cream!" 500 times to your child.

But hearing it is comforting to Max and makes him content.

And so, for the next three months, you can guess what we will be discussing in our house.

Wednesday, August 22, 2012

5 awesome ads that raise awareness about disability: love 'em!


I recently found this 2007 series of Australian ads from Scope, a non-profit that provides disability services. Cool, right?




Earlier this year, Gillette Children's Hospital of Minnesota launched a Cure Pity campaign and pledge that asked people to quit pitying kids with disabilities and instead take action to improve their lives. The video below features 8-year-old Lexi Dietz who has arthrogryposis, a condition involving constriction of the joints and muscular weakness. As is clearly evident in the video, this is not a weak-willed child.


The ads below ran a couple of years ago here in the U.S., part of a Think Beyond The Label print and TV campaign financed by agencies in 30 states that provide employment, health and human services to locals who are disabilities. The goal: encourage employers to ignore labels when hiring people with disabilities.



This summer Best Buddies launched a billboard awareness campaign in the New York area area featuring Rob Lowe, Cindy Crawford and Food Network star Guy Fieri paired with buddies; they hope to expand to other parts of the country.


Both guys look amazing. (How is it possible Rob Lowe never ages?!) Celebs can bring a lot of good attention to a campaign. But I especially like ads that, subtly or not, play off people's perceptions of those with disabilities—and force them to reexamine their ideas. Don't pity. Look beyond the labels. See the ability behind the disability.

Obviously, ads alone won't do the trick but they're a great way to rev up a conversation that's far too quiet in our country.

I leave you with this Scope TV commercial:



Scope photos/Darren Padgham; Best Buddies photo/Lyndie Benson

Tuesday, August 21, 2012

Share your child's favorite toy for a Parents magazine guide


Yes, we're in the throes of back-to-school chaos and I am thinking about a holiday toy guide! That's because Parents magazine has an annual toy guide in their November issue (which comes out in October), and I'm collaborating with them on a section for kids with special needs based on parents' recommendations. The results will be featured on Parents.com and here, too.

The Holiday Toy Guide from two years ago where you first shared your suggestions was so helpful. So once again, please let me know about toys that have benefitted, motivated or simply encouraged your children. This can be a toy that's been around for years, or one that recently came out. Classic or new, it doesn't matter, as long as you genuinely feel the toy has been helpful, in some way, to your child with speech/communication, fine-motor or gross-motor skills, or sensory issues.

Note: We are looking for toys, not video games or apps (although they deserve their own guide)!

I've created the lovely form below. Just fill it out (it should take 5 to 10 minutes, max) click submit and voila! It will go to formland.

Thanks in advance for your help.

 

Monday, August 20, 2012

The realities of inclusion and kids with special needs

Here's a happy sight: this girl in a wheelchair in the Girl Scouts fall 2012 catalog. 

The catalog also features this girl with Down syndrome.

I get all giddy when I see kids or teens with special needs featured in magazines and catalogs (as happened recently with baby Valentina, who ended up on the cover of People magazine). I'm also filled with greed: I want more, more, more. But inclusion in a catalog is one thing; inclusion in real life is another.  

Shortly after a reader shared the above (thanks, Faye) I read that an Illinois family is suing the Girl Scouts for excluding their daughter due to disability. Megan Runnion, 12, who is deaf, had a sign-language interpreter at meetings and troop outings. Earlier in the year, her Chicago-area troop was disbanded—allegedly since Girl Scout officials were limiting the group's activities because of the cost of the interpreter. Her mother, Edie Runnion, says she was later told the Girl Scouts would pay a maximum of $50 a month to support services for girls with special needs, and that Megan's family would have to pick up additional expenses.

The Girl Scouts are said to have a good track record of inclusion, so perhaps this is an anomaly. But if you're the parent of a child with special needs, you may well know the challenges of including your child in mainstream activities. I've been wrestling with that since Max spent two weeks in an inclusionary program at a camp in our area. Inclusion is awesome in concept—but in reality, it can be so tricky.

Max had a shadow, a counselor dedicated to helping him out. A couple of days after camp started, I emailed to ask how things were going; it's not something Max could tell me himself. I was told Max had made two "friends" who regularly said hello to him—and he'd "respond positively back." And that Max was having a blast.

Well, OK. I figured Max would have a good time at camp, given that there was a pool and ice-cream, but I'd wanted him to have an inclusionary good time. I wanted to know if kids were otherwise interacting and playing with him.

In subsequent days, I was told that one girl thought Max was "cool" but was having trouble understanding him. The camp hadn't wanted iPads there (to avoid breakage), but I sent it in so Max could use his speech app. I said I was open to other ideas they had about inclusion. I pointed out that Max had good comprehension, and could answer "yes" or "no" questions. I'd already filled out a list of his interests before camp started, along with certain favorite phrases of his.  

At the end of Max's time at camp, I had a brief talk with the program director and Max's shadow. Although Max made some real breakthroughs, including going into a crowded auditorium for singing, and it seemed kids genuinely liked Max (as people tend to do), in the end I just wasn't sure how much he'd interacted with other kids—or how inclusive his time there was, other than the fact that he was physically among so-called typical kids.

I think the camp needs more organized ways of communicating with parents. I will also say that I am SURE my hopes were too high. Max joined the camp mid-summer, and stepping into an already-formed group isn't easy. I am glad he tried it, and grateful that there even is a camp with a program like this in our area (the only one of its kind). Most other camps in our area wouldn't even take Max. But I was disappointed, and left wondering about techniques that help facilitate inclusion.

This same thing cropped up with Boy Scouts earlier this year. The troop leader was open to including Max, except as it turned out Max wasn't open to including them so things didn't work out. At one point, we had the troop over to our home to bake cookies. I had to take Sabrina to a Girl Scouts meeting that night, so Dave held down the fort. Afterward, Dave told me the boys weren't interacting that much with Max. Again, a situation in which they didn't know him well, but I wondered what we could have done to make things go more smoothly.

I so want inclusionary activities for Max, who has spent much of his life around kids who have special needs. Right now, this isn't on Max's radar, but I think it would do him good. Hanging with so-called "typical" kids would give him new perspectives, teach him new things, boost his confidence and open up his world. Inclusion works both ways—Max could expand other kids' perspectives, too, and help them better understand kids with special needs. Also: It would be lovely if he had someone else besides our family to share his fart jokes with.

I'm going to speak with an expert about inclusionary tactics, and I'll share what I learn. Meanwhile, if you've had success with inclusionary activities, please pass along any tactics that have helped.

Friday, August 17, 2012

Special Needs Blogger Weekend Link-Up: Share your very best!


Wahoo! Another weekend link-up for bloggers with kids who have special needs. The idea: share a favorite post of the week. It can be something you wrote, or something another blogger wrote that you loved.

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I Can't Believe How Much Chocolate Ice-Cream I Eat.

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 fabulous posts.

Happy linking!

Image/istock

Wednesday, August 15, 2012

You know better than to be racist. So why are you disablist?


Imagine this:

You are Hispanic, black or Asian. You have a heart condition and need a heart transplant to live. You visit a Major Hospital and meet with A Major Cardiologist, and then you receive a letter in which the doctor has recommended against the transplant "given your ethnicity, the complexity of the process, multiple procedures and unpredictable effect of steroids on behavior."

Now imagine this:

You are watching the recent Comedy Central roast of Roseanne Barr. Wayne Brady turns to fellow comedian Jeff Ross and jokes, "A lot of people hate you, especially because you remind us all of what a Jewish person will look like when he's 40!"

Mind-boggling, right? What hospital would blatantly deny a person because of their ethnicity? Which comedian would crack a joke like that about a Jewish person? Sure, plenty of comedians are equal-opportunity offensive (as Wayne Brady has been), but good ones wouldn't jest that an entire ethnic group is ugly because it's just not funny.

Now know this:

Paul Corby is a 23-year-old with a defective heart and high-functioning autism. He lives in Pottsville, Pennyslvania, and applied for a transplant at the Hospital of the University of Pennyslvania, as reported in The Philadelphia Inquirer. Last June his mother, Karen, received a letter from a cardiologist there who recommended against Corby getting a heart transplant "given his psychiatric issues, autism, the complexity of the process, multiple procedures and unpredictable effect of steroids on behavior."

At the Comedy Central roast of Roseanne Barr, as seen here, Wayne Brady turned to comedian Jeff Ross and remarked, "A lot of people hate you, especially Sarah Palin because you remind her of what Trig is going to look like when he's 40!" Some audience members boo-ed.

That cardiologist saw nothing wrong with denying a person a chance to live, in part because of his special needs. That comedian thought it was amusing to slam an entire population of people, those who have Down syndrome. Both thought it was OK to discriminate against, or demean, people with disabilities—even though they most likely wouldn't have gone to the extremes they did based on a person's race or ethnicity.

Once again, I'm reeling from prejudice against people with special needs, and dreading what the future might hold for Max.

I'm not downplaying racial prejudice in America: Intolerance and hate still exist in too many people's hearts and heads (hel-lo, Ku Klux Klan rallies). What racism and disablism have in common is that both are about closed-mindedness and ignorance, and both are hurtful and painful. One major difference: Americans are largely aware of racial intolerance. It's an issue good people form groups about; our town has a community coalition on race. We teach our kids to be open-minded and accepting from a young age (well, hopefully we do). Even when people have racial prejudice, they may well know not to let it show. Not p.c.

The same can't be said of disabilities in public discourse and perception. Ableism, disablism, whatever you call it: It's out there, and it's blatant. People freely use the word "retard" as a joke or punchline, including otherwise "sophisticated" people I know (and some fight you on it when you explain why it's demeaning). In the year 2012, experts still consider disability one acceptable reason to deny a transplant (as also happened when a CHOP doctor advised against giving little Amelia Rivera a kidney transplant because she had "mental retardation," although the hospital eventually agreed to it). Last month, a group of Chicago suburbanites opposed to a group home for eight women with intellectual disability stood in the village chamber council and called the proposed tenants "retarded." They could harm kids in the neighborhood, some mused.

What I'm saying is: There is good awareness out there about respecting people of different races and ethnicities—and too little awareness about respecting people with different abilities. "Discrimination against disabled people is the last remaining equality issue to be addressed," noted commentary on a series of British ads (including the above) geared toward disability awareness. It's true here, too.

In July, Iowa Senator Tom Harkin, chair of the Health, Employment, Labor and Pensions committee, issued Unfinished Business, a report that noted disability employment has lagged over the last two decades, and that people with disabilities participate in the workforce at a rate that's half of any other group's, including women, African Americans and Latinos.

Harkin's call for the government and business to make hiring of disabled people a priority is heartening. Still: How are we going to convince business people that, yes, people with disabilities can be just as abled as anyone else in many ways—and just as valuable as anybody else? How are we going to convince doctors, those who laughingly call other people retarded, the strangers who stare at my son as if he were a freak of nature? How are we going to change perceptions of those with disabilities?

I do my best to help others quit focusing on Max's cerebral palsy and see the amazing kid he is. When friends use the word "retard," I tell them it's offensive. But that's me, Max's mom. The truth is, unless you have a child or adult with special needs in your family or circle of friends, or you work in the field of disability, or you read a shocking story in the news, this is most likely not stuff you ordinarily think or talk about with your kids, partner, friends, whoever.

Without that awareness, and more open and prolific discussion about treating people with special needs as equal members of society, kids and adults with special needs will continue to be punchlines and pitiful creatures. Doctors will continue to think that individuals with disabilities don't deserve transplants. People will continue to innately believe that those with disabilities are less worthy human beings.

Please, won't you keep the discussion going?

Update: Wayne Brady issued the following apology on his Facebook page on 8/17; I think it's a good one.

This letter has taken me a few days to compose because of the conflicting emotions that I'e experienced since the day of the Roast and its subsequent airing. The environment of the Roast is a comedic (hopefully), tasteless (mostly always) affair that encourages everyone to out-filth eah other. Not normally what I'm known for, right/ But when I was invited I jumped at the chance to play outside e of my perceived "norm" and have fun. The Jeff joke was written for me and at the end of the day I take full responsibility for saying it. It wasn't meant as a slam to Trig and at the time I didn't see it that way.

I could defend it as a performer, but I would rather apologize from the bottom of my heart as a father. I understand how a parent, who loves their child, who tries to nurture and shield them when they cannot defend themselves, would take offense.. I have many times experienced this feeling. I've had awful things said about my daughter.. Violent and most times racial stabs. Being in the spotlight I have built a thick skin to these sorts of things. My daughter ( who's now old enough to understand ) is another story. That being said I write this letter with sensitivity and a strong stance of responsibility for my actions.

I thank everyone who's expressed their opinion for reminding me that my voice is heard... It's easy to forget sometimes in front of cameras and lights.

To the Palins, please know that no malice or harm was meant. To the other families who were touched negatively, I hope you'll be able to accept this apology as well.

I've always said that people in the public eye should be held responsible for what you say and I'm no hypocrite. Thanks for reading and letting me express my side.

Take care all,

Wayne


Inspiring wishes for the future from a man with autism


I get a good deal of spam, the occasional chain email, and a whole lot of notices I've won a lottery, but I don't think anyone's ever sent me a poem. That changed with an email the other week from one Scott Lentine, who has high-functioning autism and who lives in a Boston suburb. He works for the ARC of Massachusetts where, he says, "I try to persuade lawmakers to pass key disability resources legislation to improve the lives of people with developmental disabilities."

He asked me to share one of his beautiful poems here. It speaks to the hopes I have for Max, too.

The Ode to the Autistic Man

Try to understand the challenges that I face
I would like to be accepted as a human in all places
Where I will end up in life I don’t know
But I hope to be successful wherever I go
I would like to expand my social skills in life
Making new friends would be very nice

Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I face today
Increased acceptance will lead me to a brighter day

By the age of 20, I will have made tremendous strides
I know in the future, life will continue to be an interesting ride
I have made new friends by the year
I will be given tremendous respect by my family and peers
I hope to get noted for bringing the issue of autism to the common man
So that autistic people can be accepted in this great land

Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I face today
Increased acceptance will lead me to a brighter day


On my parents.com blog:

"He Doesn't Look Autistic" and Other Autism Misconceptions

On Kicking a Co-Sleeping Kid with Special Needs Out of Your Bed

Tuesday, August 14, 2012

Raising kids with special needs: The American cheese milestone



It's how milestones happen with Max lately: I'll suddenly notice him doing something new and incredible, only it's not something you'd ever read in one of those child development books or newsletters. It's not a milestone that would necessarily impress anyone else, or one most people could notice. Last night, for instance, I celebrated the American cheese milestone.

Max likes a slice at bedtime. "Eeeess!" he'll say, and I'll dutifully go downstairs and get a slice along with a couple of paper towels. Max eating cheese in bed has traditionally been a messy activity; he'd down some, but pieces would fall out of his mouth. His food retention has been an ongoing challenge: Because of the cerebral palsy, his tongue and chewing aren't so coordinated (CP has a way of messing with muscles in all parts of your body).

Back when Max was a baby, he had trouble nursing because of that. When I started giving him a bottle, a lot of it would dribble out and we'd go through a gazillion burp cloths every day. Once he was on solids, he'd spew those out, too. Feeding him one jar of food could easily take a good half hour. Spoon in. Scoop up what came out. Spoon in. Repeat, repeat, repeat, repeat.

I'd known that Max was going to have issues with movement, possibly with speech and other delays. The feeding issues blindsided me. Eating? My baby, already facing so many challenges, was going to have issues with eating?

I'd never heard of a baby who wasn't able to keep food in his mouth. It was just too much.


Somehow, though, we got enough food and milk into Max; he was quite the chubster. Often, Dave fed him; unlike me, he didn't get distressed by what was going on.

It took years for the eating issues to improve yet they did, slowly but surely. Suddenly, Max wasn't dribbling as much oatmeal out. Suddenly, more spaghetti was staying inside his mouth. Suddenly, ice-cream wasn't an ordeal (and, man, he was determined to keep as much of that in as possible).

Drinking liquids has been trickier. We thicken them up with a scoopful or two of Hormel Thick & Easy. But you can't put the powder in water, and sometimes drinking a glassful makes him cough. "Small sips, Max, small sips," I'll say.

Back to the cheese—oh, that beautiful, gorgeous piece of American cheese. I was sitting in Max's bed last night. I usually hold the cheese for him, because when he does he grasps it so tightly it mushes up. As usual I split the piece in half, folded it over, and placed it on the back molar so it was easier for him to chew, just like the feeding therapist once taught me.

Max was happily munching away when it dawned on me: He wasn't spitting any of it out. No flecks of yellow on his pj's, no bits on the comforter. It stayed in his mouth.

S-C-O-R-E!

It was a small thing, but it was a big thing.

It was not unexpected but it still seemed astonishing.

It was one more eff-u to the cerebral palsy.

It was the sustenance that feeds my hopes for Max.

I didn't say anything to Max, didn't squeal, didn't do a happy dance. I just celebrated the American cheese milestone in my heart.


Image: free-extras

Monday, August 13, 2012

Awesome kids: a slideshow



The slideshow I put together for my BlogHer panel, with photos you sent of your kids. Enjoy!

Saturday, August 11, 2012

Special Needs Blogger Weekend Link-Up: Show off your posts!


Here's another link-up for bloggers with kids who have special needs. The idea: share a favorite post of the week. It can be something you wrote, or something another blogger wrote that you loved.

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: My Mom Is The Most Gorgeous Mom EVER!

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 fabulous posts.

Happy linking!

Image/istock

Friday, August 10, 2012

Group therapy: Share your strategies for IEPs and help another mom

Wanted: Strategies for IEPs! This week I got an email from Andrea, a mom of two; her youngest, Emerson, 6, has cerebral palsy and  seizure disorder. As she says, "Since Emerson was born, I have hit the ground running with educating myself with all the knowledge that I can, finding every available resource, researching all I can in order to get my daughter what she needs.... Emerson is smart, funny, imaginative, creative. We need to tap into what will take her further."

She's dreading an upcoming Admission, Review and Dismissal committee meeting, where parents and educators design an individualized education plan. What she's struggling with: the goals of the IEP. "I want goals that are objective, not subjective," she wrote. "I don't want goals written in the '4 out of 5 times, Emerson completed xx' format... I feel like her IEP is very surface, it has no meat to it in order to tap into the best way she learns."

Max's IEP uses similar measures: "with 90% accuracy," it'll say; "75% of the time." I've never found the percentages to be particularly insightful, but I've never bothered to fight the system. I pay more attention to the actual results I see at home (reading, counting) and generally view the IEPs as a blueprint for the school year, which I fill out with ongoing conversations and emails with his teachers and therapists, official parent-teacher conferences and the occasional meeting I request.

When I've had specific requests at IEPs, I've gathered as much ammo backup as I can get, whether it's a letter from Max's neurologist or developmental pediatrician or a list of suggestions I've typed up and copied for everyone in attendance (I've been known to bring a clipboard to look Very Official). Having expert input and organized points is convincing, and also keeps my mind on facts and not get emotional. I've found that using the line "I know we all want what's best for Max" helps keep the focus on him and not on what I want for him. No matter what, compromise is often king at IEPs.

Andrea is eager to get ideas from other parents. So, what advice do you have for her on how she might better navigate her upcoming meeting with her daughter's school?

Thursday, August 9, 2012

The best swim gear for kids with special needs


What's the best swim gear for kids with special needs? After the recent incident in which a boy with cerebral palsy wasn't allowed to wear water wings in a public pool, I had a lot of questions about adaptive swim gear—and I got a lot of good anwers from Terri Lees, MS, a member of the American Red Cross Scientific Advisory Council and the aquatic supervisor at the North Kansas Community Center in Missouri. Check out what she had to say, as well as the Red Cross's free First Aid app for iPhones and Androids, which has a section on water safety. Then check out flotation devices and swim aids (which help position a child for learning to swim) recommended by experts and parents alike. Since pools have different policies on what kind of gear is allowed, you may have to advocate for your child's needs. (Not that you aren't already used to that.)

FINDING GOOD SWIM GEAR FOR KIDS WITH SPECIAL NEEDS

1. Look for U.S. Coast Guard Approved flotation devices
"Aquatic experts including the Red Cross have long agreed that a U.S. Coast Guard Approved personal flotation device (PFD) is the best option for keeping a child safe in, on and around the water. However, this is only half of the story. In reality, the key to safety for any child—abled or differently abled—wearing any type of flotation device is the supervision provided by the parent or caregiver when the child is in the water. Some facilities strictly enforce 'no use' of any flotation devices; the reasoning is that it gives the parents and possibly the child a false sense of security. As an aquatic supervisor of 30 years, I can tell you that this has some truth. We often see parents turning their attention away from children in a flotation device to visit or attend to another child. The guards have often had to go into the water to bring the child back to a vertical position, face out. That said, if there's a pool that won't allow a child to have the water assistance he or she needs, parents may need to fight to have it allowed."

2. Get the right fit
"A flotation device needs to provide support and safety, stabilize, facilitate movement, reduce fear and give the caregiver an additional 'hand' in supervising the child. The device should fit the needs of the child based on body type, strength, range of motion and style of movement/swimming. Too much flotation can impair mobility and reduce independence. That's why the choice of a device is as individual as the child with disability. His or her unique needs should be considered."

3. Get expert help
"Work with an adapted aquatic instructor to find the safest, most comfortable personal flotation device that will allow your child to have the most fun in the water! Google 'aquatics therapy' or 'aquatics rehabilitation' or 'adaptive aquatics' to find a local one. Many OTs and PTs have experience in this area, so ask the ones at your child's school if they can assist. Rehabilitation hospitals with pools may also have a person who can help."

[Note from me: You can also call your local YMCA and see if there are any swim instructors who have experience or are equipped to work with kids who have special needs.]

FLOTATION DEVICES FOR KIDS WITH SPECIAL NEEDS

U.S. Coast Guard Approved Flotation Devices

Stearns Puddle Jumper Deluxe (for kids 30 to 50 pounds): "It has been a totally different pool experience since we bought one this summer," says Julie. "Our little man is able to move around the pool independently... with us nearby, of course. He cannot stand independently out of water, so it has been fun to watch him stand and walk with one." 

Ho Sports Life Vest (for kids 50 to 90 pounds): "I lucked out and got mine at Costco for a deal," says my friend Peggy, mom to an 11-year-old with Down syndrome. "It was a game-changer. He has complete freedom and can actually 'swim' with it. He can't go under—it completely pops up with him laughing and saying 'More!'"

And one expert-recommended device made in Canada


Life Jacket-Adapted (Lj-A) (comes in a variety of sizes, for 18 pounds and up): "This works perfectly for my Anna because she has no head control," says her mom, Paige. "It keeps her head above water, is very supportive with straps around both legs, waist and chest yet gives her some freedom even though I'm holding onto her by the loop in the back. If we didn't have the life jacket she would have to be held in the water, which isn't really age-appropriate for a 10-year-old nor very freeing, which is what being in the pool is all about for her."

And one more great idea from a parent (though it might not fly in some public pools)

Neonoodle: "I've had a hard time finding CGA-approved pool tools that provide the right support for Zoe," says her mom, Suzanne, "so I was thrilled to find something affordable that worked and was easy to get. She can't swim or float independently, but she can hold onto this noodle with adults hands on safety assistance. Because it's neoprene and soft, it can be used for indoor therapy and support, too." Find 'em at Sam's Club, BJ's, Wal-mart and Academy stores.

SWIM AIDS FOR KIDS WITH SPECIAL NEEDS


Danmar Products Delta Swim System #8720 available in small (30 to 60 pounds); medium (60 to 150 pounds); and large (150 to 240 pounds): Best for kids who are able to maintain balance. Danmar has a wide array of swim aids for kids and adults with disabilities.

Sprint Aquatics Water Walking System available in sizes Xsmall to Large: "It is my favorite piece of equipment—I use it more than anything else, except noodles," says Lees.  This site also has a wide array of swim gear, including an Aquatic Therapy section.

Sprint Aquatics 3-Piece Belt Float with an adjustable 50" belt: "The sectional floats can be positioned anywhere along the belt and therefore can be positioned in a variety of ways on the child," says Lees.

Sprint Aquatics Buoyancy Wrap: "The Velcro means it can be positioned almost anywhere along the arms or lower legs for additional support without limiting movement," says Lees.

Wednesday, August 8, 2012

A special needs Hooters? Bring it


"Candidates debate state disabilities policies: Advocating state funding for Hooters with special needs...."

The press release popped up in an email recently, while I was riding on a train in a semi-trance induced by the lull of movement and having actual time to think.

Wow, I thought. A Hooters for special needs? That's being funded by a state?! Eeep. Ick. Had business in this country reached such lows that the government was stepping in to help establish a special needs Hooters?

I pondered what that even meant.

Maybe they were going to hire busty waitresses in wheelchairs? Busty bartenders with Down syndrome? Busty cashiers with autism?

Maybe they were going to adapt beer bottles and mugs so that guys with cerebral palsy would be better able to hold them?

Maybe they were going to make specially-shaped chicken wings so they could be more easily grasped, too?

Maybe they were going to bring in big-boobed singers with disabilities?

Maybe they were going to create a Hooters app for speech-impaired people? You know, one that could utter phrases like "Hey, baby, I'll have a pitcher!" or "Nice wings ya got there!" or whatever customers at Hooters typically say?

As my imagination whirred, I decided that if this meant guys with disabilities could better enjoy Hooters, then I needed to reconsider my initial "ick" stance.

Now, it's not that I want Max to put "Become a regular at Hooters" on his life bucket list. Actually, I'd prefer he avoid that place like the plague. I'm not gunning for him to someday sit around leering at women and objectifying them.

But when he grows up, I want him to be able to go there—if he wants to do that.

I want the choice to be his. 

I want the entire world open to him, with all the freedom accessibility and inclusion bring.

Even Hooters, so be it.

I took another look at the news release. "Advocating state funding for Hoosiers with special needs," it said. It was from the Indiana Daily Student.

Oh. Hoosiers, not Hooters.

So, no Hooters for special needs in the works right now. Never thought I'd fantasize about that but, hey, it wouldn't be a bad thing.


Photo: Flicker/Parka81

Tuesday, August 7, 2012

10 reasons BlogHer12 rocked (and wishful thinking for the future)


I'm still recovering from BlogHer, aka the mother of all blogging conferences—processing the food-for-thought I got, recovering from sleep deprivation, and generally missing the awesomeness.

BlogHer 2012 was super-sized (think 5000 attendees), and some people were disgruntled by over-crowded sessions. Several women I know who've gone to the con since it started felt it had lost its heart. This is my fourth BlogHer; by the time I started going, it was already 1500 strong. Next year's venue in Chicago is more spacious, so that'll solve the crowd situations. The bigger challenge: figuring out how to retain that spirit of community, although I personally found it on HealthMinder Day—and in connecting with old friends and new throughout the conference. As is generally true in life, things are what you make of them, and I had me a great time at BlogHer12. Here's why:

Because there's always stuff to learn. I've picked up a lot of info in my four years of blogging, but there's still a whole lot I have yet to know and understand. I sat in on a coding session (HTML Doesn't Have To Be A 4-Letter Word) and suddenly, it was less of a foreign language (find a good basic guide here). I listened to an Image Post-Production session with photographer Diane Cu of White on Rice in which she gave a visual step-by-step of improving photographs ("contrast" is your friend; so is black and white). And in the Forming And Using Online Orgs to Make Change session, I listened to women's incredible (and sobering) stories about how they started their grassroots efforts. Motivated women change the world: Oh, yes.

Because you get to talk about what you love. Blogging's my passion. It's my addiction. It's my third child. And so, I'm psyched to talk about it, whether I'm on a panel, in the q&a part of sessions or just standing around the hallways blab-gossiping with friends.

Because good writing deserves props. At the Voices of the Year keynote, we listened to bloggers reading their work, including a powerful post by Arnebya Herndon on the Treyvon Martin shooting, a hauntingly beautiful post byVarda Steinhardt about her aging mother that made me cry, and a post by Shari Simpson about getting her period at Aaron Spelling's mansion that had me crying from laughter.

It was really nice to see the video I'd made acknowledged in a slideshow.

Because you get inspired. President Obama opened the conference with a live video address (props, ladies: He's glad to have women bloggers serving as role models for Malia and Sasha). Martha Stewart's keynote on Friday was entertaining (complete with her personal account of how her dog famously busted her lip) and encouraging ("Be personal, be passionate, be real"). But I was a sucker for Katie Couric's Saturday keynote. She has a new daytime talk show coming out September 10, and if her speech was any example, she's going to kill it. Couric talked about everything from her great guns (the woman used to be a gymnast) to taking action to prevent colon cancer after her husband's death from it (the non-profit she started has raised millions of dollars for research).

Because you never know where you'll find yet more inspiration. Friday morning, I attended a McDonald's Listening Tour breakfast, where we heard about the company's healthier-food initiatives  (for one, they'll be including more fresh fruit on their menu). A well-dressed woman came over to our table and struck up a conversation. She was Jan Fields, president of McDonald's. As it turns out, she's chair of the board for Chicago's United Cerebral Palsy. Listening to her motivated me to get more involved with our local UCP.

Because you can find insta-help. Last year at BlogHer, I met Sarah Kimmel of Technology for Moms at a Geek Bar, where she installed the lovely social media bookmarks you see below my posts. I've been having a couple of tech issues on the blog and when I approached Sarah after her html session, she fixed them on the spot. (She's now running Blogger's Help Desk, so she can help you, too.) At the #Blog2012: A Conversation session, Laurie White asked bloggers to stand up and ask for the help that they needed—and then she asked for people who could help them to raise their hands. It was pretty awesome.

Because you have serious fun. I roomed at the W Hotel with Ellen G. of Confessions of an IT Girl, a woman so amusing it's risky to take a drink around her because you might just snort it through your nose. We even got to belly-dance together at the HealthMinder session on avoiding burnout (though somehow I "neglected" to get a photo of me doing that).


Ellen was also my dancing partner at CheeseburgHer, a party devoted to the consumption of—you guessed it—cheeseburgers. I miss going out dancing with friends, something I never do anymore. That night, I sat in the lobby lounge of the Hilton and talked with a great group of women, the kind of gabfest you used to have in college. (Shout out to Jodifur, whose son is on a swim team that swims fast.)

The centerpiece of the Sparklecorn party, perhaps the most photographed unicorn in the world

Because you learn about Cool New Stuff. Yeah, there's swag. Hopping from booth to booth in the Expo halls is, as one woman I know called it, "like trick or treating for grown-ups." But I found out about some good new products at the conference, like Lifeproof, a waterproof case for iPads and iPhones. And Dannon's Light & Fit Greek yogurt, 80 calories and tasty (it would have come in handy for my Unofficial BlogHer Pre-Conference Diet). And the Mickey Mouse Clubhouse Road Rally "appisode" (Max remains obsessed with the show). And Active Sport Ready Chapstick, with SPF 30 and a little clip on top, which I hereby confess to hoarding because Dave evidently eats them or something, so often does lip balm disappear in our home. And Safe Kids USA, a network of organizations geared toward preventing childhood injury funded by Johnson & Johnson (I'll be doing a Q&A with them on car safety). There were three non-profit booths in the Expo: Shot At Life (leave a comment on one of this month's Blogust posts to raise $20 toward vaccines); the American Cancer Society (which is still doing a More Birthdays campaign); and Points of Light (the world's leading volunteer organization). Next year, I'd love to see more non-profits.

Because, hel-lo, you have a hotel room and housecleaning and nobody busting in on you when you shower or asking "Mommy, can you wipe me?" 'Nuf said.


Because you can spread the word about what's important to you. Blogging conferences can be overwhelming, unless you a) plan; b) go with a purpose; and c) go with the flow. Me, I wanted to hang with friends, meet new ones, pick up info and spread the word about the awesome-ness of our kids. Before I went to the conference, the BuildASign people, who specialize in banners and signs, made a batch of this fridge magnet for me. If I didn't see you at BlogHer, I'd be glad to send you one—just leave your email below and I'll be in touch. But I hope to see you at BlogHer next year.

Monday, August 6, 2012

Raising kids with special needs: On letting down your defenses


I had an attitude-changing experience at BlogHer 2012 HealthMinder Day last Thursday. In the morning, I moderated a panel with Kate Canterbury and Marisa-Howard Karp called Blogging About Your Child With Special Needs (you can see live-blogger transcripts from the day here). We discussed why we chose to blog, how much we do and don't reveal about our kids, how much we've given and gotten in return. I mentioned an old Talmudic saying, "He who has saved one life, it's as if he has saved the world." Blogging's been similar for me: Every single time I get a comment or email from a mom about the inspiration found here, I feel as if I've inspired the world.

Later, I was at the Overcoming Burnout session, listening to Tanis Miller, Julia Roberts and Susan Senator. Susan spoke of the day she and her son, Nat, were in Boston Commons watching some jugglers. Nat has severe autism and some "mannerisms," and as he stood there doing this thing, Susan got her her guard up because she assumed bystanders might laugh at Nat. She was, she told us, prepared to snap photos of them on her iPhone and post them on Facebook with the caption "See who laughed at my son!" And then: Nobody laughed. The lesson she learned that day, she recalled: "I should try to chill and enjoy myself."

It could have been me standing there, telling that story. Because my defenses are always raised when it comes to Max. I am hyper-aware of people staring, of kids who might make fun of him, of adults who shun him or give him that pity stare. This instinct comes from my fierce desire to protect him, and from my desperate wish that people wouldn't be unnerved or scared of his disabilities.

It's been this way for years. When Max was about three, I started seeing a therapist. I sat in her office during our second session, crying about how lonely I felt; a group of women I'd been friendly with weren't having Max and me over for playdates. I mused about whether they felt uncomfortable around him or me. "Maybe it's not them, it's you," the therapist said. Wha?! I wasn't prepared to hear that, and it upset me even more. I stopped seeing her soon after.

Only years later did I realize that even if she'd been blunt, her words contained truth. I am sure back then I was throwing off all sorts of "Don't treat us like aliens!" pissy vibes that must have been off-putting. Sometimes, I still throw those off.

After Susan finished talking, I stood up and told her how much I related to getting ticked off about people staring, something I've vented about. Lately, I've been trying to diffuse situations with staring adults by saying, "Would you like his autograph?" Humor helps. But in general, I had to acknowledge that day, my defensiveness about Max is something I still need to work on. It can only help Max. And, as my friend Kate has noted, my blood pressure.

Like I say, I keep right on progressing developmentally, along with Max.


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